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Copy of Episode Kim
Patient Stories, Podcast

“I’m not Hysterical, I’m Sick:” Kim’s Story of Medical Gaslighting

August 4, 2021
75 min read
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Trigger warning:

This episode contains a discussion about suicidal ideation due to chronic pain, medical trauma and more. This discussion takes place between minutes 28:30-38:00 on the podcast.

Copy of Episode Kim

Summary

On Episode 41 of the Arthritis Life Podcast, Kim shares her experiences with medical gaslighting, a phenomenon where a physician or other medical professional dismisses a person’s symptoms, blame’s symptoms erroneously on psychological phenomena or otherwise trivializes a patient’s experience (for example by saying “You’re not sick, you’re just anxious”). 

Even after getting diagnosed with bi-lateral pulmonary emboli, a necrotizing lung nodule and periodic paralysis, Kim was repeatedly dismissed as being “hysterical,” “just anxious” and having “nothing wrong” with her. It turns out her lung had collapsed, she had an air leak on her lung suture line and she also had rheumatoid arthritis.  

Kim shares her experiences and perspectives with candor in hopes that no one who’s gone through similar experiences will feel alone.

Episode at a glance:

  • Kim’s journey going from 90 minute daily bike rides to not being able to walk due to a collapsed lung and other undiagnosed health issues
  • Kim’s multiple experiences with medical gaslighting, or being dismissed by medical providers, including being erroneously diagnosed with “conversion disorder” when she presented with lower body paralysis.
  • Kim files a complaint with the hospital (who employed Kim’s original surgeon who told her “nothing’s wrong” when she in fact had a collapsed lung) and nothing happens.
  • Kim and Cheryl discuss ways the medical system can be improved to avoid medical gaslighting in the future
  • Kim shares what it’s been like to balance treatments for rheumatoid arthritis with hypokalemic periodic paralysis.
  • Kim shares how she’s mentally coped with everything she’s been through.
  • TRIGGER WARNING: between minutes 28:30-39:00 on the podcast, this episode contains a discussion about suicidal ideation due to chronic pain and unresolved health issues. Kim and Cheryl discuss the mental toll of feeling like you “never have a break” from being sick or feeling pain and how the feeling of a lack of control can lead people to suicidal thoughts due specifically to physical suffering, not due to psychological feelings of worthlessness.
  • SUICIDE PREVENTION RESOURCE: If you are in the USA and you are in crisis, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.
  • Kim and Cheryl discuss what it feels like to feel “trapped” in your own body
  • Kim & Cheryl discuss “thin privilege” and how people who are overweight face additional stigmas when seeking medical care
  • Kim & Cheryl discuss the “inconvenient truth” that so much of our health is influenced by luck rather than things we can control (like diet). 
  • Kim discusses equity versus equality and relates those concepts to healthcare
  • Kim shares “a day in the life” and what tools help her function on a daily basis.’
  • Kim shares what brings her joy in life, including rescuing kittens.
  • Kim provides an alternative to the 1-10 pain scale.

Speaker Bios:

Kim:

Kim has experienced chronic intermittent pain since she was seven years old. She has been written off by doctors as being depressed, anxious, over exaggerating. Her severe pain experience has been in her head/neck/shoulders but more recently it has extended from her hips to her feet and from her shoulders to hands. 

In between her daily struggles with pain, she has experienced massive bi-lateral pulmonary emboli, a lung nodule that started necrotizing her lung tissue, hypermobile joints and most recently periodic paralysis. The necrotizing lung nodule was determined to be rhematoid in nature so that put her into the rheumatoid family and a working diagnosis of rheumatoid arthritis. 

Outside of illness, Kim is an academic librarian, an endurance cyclist, newborn foster kitten parent and lover of state and national parks. 

Cheryl:

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode sponsor

This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Join the waitlist today! 

Episode links:

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Full Episode Transcript

Interview between Speaker 1 (Cheryl) and Speaker 2 (Kim)

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

00:49 Cheryl: Hi, Kim! I’m so happy to have you on the Arthritis Life podcast today.

00:54 Kim:  Hi, I am so excited to be here! I’ve been looking forward to this for months.

00:59 Cheryl: Yes. And thank you so much for coming, even though I know your health has been very up and down lately, meaning the last couple of days, but also the last lifetime. So, can you just start off by telling the audience just a little about yourself, like where you live and some of your health challenges?

01:14 Kim: Yeah, absolutely. So, my name is Kim. I am originally from a very small town in Illinois, down in the cornfields. But I now live in Charlotte, North Carolina, down in the South, so small town to a big city. My health things, these are so funny and difficult to describe, and I cannot wait to dive into these deeper. So, my three big diagnoses, like big umbrellas that I have right now that I — it’s so funny — I have searched for these for years and actually just decided to give up right before I got them all. So, they are, first one, rheumatoid arthritis. And we’ll be digging into that later. Next one is hypokalemic periodic paralysis, which is a very rare genetic disease where my potassium in my blood system drops and my muscles stop responding, so I get paralyzed. And the third is just some kind of fussy connective tissue disorder where all I know is, from a surgeon, are ‘her tissues are not normal’. So, I don’t have anything bigger on that. Yes, but ‘her tissues are not normal’. And I’m like, oh, no kidding.

02:30 Cheryl:  Wow, that’s a lot. And can you tell — just because I think it’s — what kind of work do you do?

02:34 Kim:  Yes, I am an academic librarian. I work at a university primarily with first year and anthropology students, which I love it so much. My background was in anthropology, so it’s amazing to get to use that again and even keep applying it back to my own health. And so, what I teach mainly is called Information Literacy, and it’s essentially trying to teach students the power behind information. So, understanding how it’s created, how it’s organized, how it’s processed, how it’s shared, and what that means for the information that is there to try to — as I’ve been doing for the last however long — is battle this misinformation, disinformation, that causes just a lot of struggle within our human society. 

03:23 Cheryl:  Yeah, I feel like for all newly diagnosed chronic illness patients, they should be required to take an information literacy class, because it would save people from falling down these rabbit holes of these miracle cures, and yeah.

03:35 Kim:  Yes. Understand what is the difference between a blog, like a hospital systems page, a government page, website, a book that is written by maybe like a pop science kind of one-person hobbyist, a book that is a well-researched, well-cited, and the kind of information you would find in there and how you would use it. So, that is my daily life passion. 

03:57 Cheryl: That’s so wonderful. I mean, I was an anthropology minor so I just want to talk to you about anthropology. But yeah, but for today, we have so — again, I’m just so grateful for you for sharing your story, because there’s a lot. And I know that something that we both are really passionate about and have — unfortunately — have in common, is the experience of medical gaslighting. So, can you tell us about how this happened to you with respect to your lung nodule, etcetera? 

04:27 Kim: Yeah. So, I want to back up and kind of set the stage for this lung nodule happening. I have known that I’ve had this nodule, which is basically just like a kind of growth in my lung. It had been there for about a decade and we weren’t worried about it. I’m still fighting other symptoms my whole life, just mostly pain. All sorts of issues with pain, and then some really gnarly — I’ve had a couple of blood clots that were really scary and terrifying with some ICU stays for those. And then, you know, I have been digging and trying to get this diagnosis, but I finally just decided, never mind. I’m just going to manage symptoms and I am going to live my life. 

So, I spent nine months doing endurance training because I’m a road cyclist. This means that I was riding my bike for 250 miles a week, usually 30 to 80 miles at a time outside on the road. I’m not very fast, but going around averaging 16 miles an hour or so, which is pretty okay, doing all of that. And I had been having for well over a decade issues with my right shoulder. It’s very loose, coming out of the joint. Finally got a surgeon to do surgery on it, we did the surgery. And then two weeks later, everything just like crashed. I had tried to go back to work, and all of a sudden, I could not move my legs. 

So, that’s where, if you remember where I said the hypokalemic periodic paralysis, will eventually get that there because I was gaslighted on that for a year and a half. But when I got to the ER for that, they found this nodule in my lung had opened up a hole. So, what it had essentially done is necrotized and destroyed lung tissue in my left lung, a good two inches by two inches. And it hadn’t been there about a year before. 

So, the doctors were all in a panic that this had to come out immediately. They did try to biopsy it, they looked at it, they could not figure out for the life of them what it was. Usually when you have these, it’s a walled off — it’s an old infection or something else, or it could be like hiding a cancer. So, they decided best course was to remove it. I had surgery to take it out, where they cut out the nodule and the whole hole so that essentially it can’t keep growing. And after that surgery, I did not recover. They sent me home and I was struggling to do anything. I was struggling to breathe; I could not fall asleep. If I lay down on my back I would begin to suffocate. 

07:03  This is a minor trigger warning if you don’t like body fluids, I’ll give you some minute moments to like mute it, or turn away, turn it down. My chest cavity was full of fluid that I did end up having taken out, about half a liter. Really gross, very uncomfortable, felt better after that but I was still not getting better. I reached the six-week point. I’ve been complaining to my surgeon at all my follow ups, “I can’t breathe. I am not better. I’m like nearly passing out in a Target. How did I go from doing a 90-mile bike ride to suddenly ‘I can’t walk half a mile to the grocery store’, like what is wrong?” And he just kept insisting that there was nothing wrong, my X-rays were fine. 

Finally, I did go back to the hospital and they admitted me for a full week because my lung had started to collapse a little bit. And I was like great, I told you I don’t feel well. And this surgeon comes back to me and he just starts to scold me so hard that I started crying by myself in this hospital. I’m hooked up to the walls with like chest tubes coming out of my side. And he is just berating me.

 He’s like, “Why do you keep coming to the ER? I see that you have anxiety. Is it just anxiety?” He’s like, “There’s nothing wrong with you. I have told you over and over, you are tall —”, so, I’m five foot nine, and he’s like, “You’re very thin.” I’m 120 pounds. So, he’s like, “Tall and thin people often have problems with this. You just need to keep waiting.” He was just so angry at me. It felt like he was taking it personally, that like I was doing this just to annoy him somehow. 

And I cried, and cried, and cried. I tried to get a new surgeon. They wouldn’t let me see a new surgeon. I eventually am out of the hospital. He tells me, “Come back in a month.” We’re now three months post-surgery and I come back and he’s like, “Huh, I’m surprised you’re not better by now.” And I was like, “I’m not the fluid is back. I can feel it. You can feel it. You can hear it,” and he gives he tells me again, “You are tall, you are thin.” He tells me that — he’s like, “If you go see someone else, they might tell you need another surgery, but you don’t need that other surgery,” like very heavily implying I should not talk to and I shouldn’t even see another doctor. And he said, “Come back in three months.” 

09:29  We’re already three months post-surgery and I cannot work; I cannot do anything. Luckily, I already had a second opinion scheduled with a doctor in a research hospital system fully outside of there. I saw them and they’re like, “Oh, absolutely not. You’re having a surgery. Your lung is still collapsing.” So, that doctor lied to me because he told me my X-rays were fine. I would get my X-ray path results, or X-ray radiology results back, and it would say, “Her lung is getting worse every time. Her lung is getting worse.” And he’s just insisting that it’s not. 

So, I had one day where I won’t share all the details, but I knew something had gone wrong. And I drove myself two and a half hours with a heart rate of probably about 140 to that hospital and was like, “Hey, I think my lungs collapsed,” and they’re like, “Wow, sure has. We can’t find it.” So, I get admitted immediately, they get more chest tubes in, relieve all the pressure. 

And then they finally, finally — this is my, like, the best moment or the worst — they did a CT scan of my chest and the doctor calls me back. I’m still in my hospital room, like, “Oh, that’s not good if she’s calling me. It means they found something.” And they said, “You have an air leak along your original suture line. You’re gonna have surgery again, we’re gonna redo the surgery.” And I definitely had a night in that hospital where I just stomped around, and just swore that surgeon up and down in my head, and just had my moment of like, “I was right, I was right.” So, they redo the surgery. I got released within a week, I got to go home, and I got better. Suddenly, I went — I’m not normal — but I went back to much better than I was before. Unfortunately, as we’re recording now, we’re still in the pandemic. I was released in March of 2020 just to go straight into the pandemic. So, I have been home inside since then. 

11:32 Cheryl:  Can you remind me — I’m sorry — at this point, you did not have any other diagnoses? Just the lung nodule? Or did you already have rheumatoid arthritis? 

11:39 Kim: No. So, this is when we’re now moving from the — so, I’m getting these pathology reports back with the lung nodule. And you can even read and they’re like, “Oh, it’s probably an infection. It’s probably this, it’s probably that.” And nope, but all they could conclude was, “It’s a rheumatoid nodule.” So, that sent me back into the rheumatology system. And I’ve already seen at least two or three rheumatologists, I have done all the workups, everything. I’ve always had nothing showing up on my bloodwork. No RA factor, I don’t even show like inflammation. And it was really funny to hear all these doctors be like, “Wow, I think you have an inflammatory disease, and that’s what caused your like lung nodule to die, and why you get blood clots.” I’m like, I know. I have been telling you my body is on fire for the last five years, and I think you think I’m just exaggerating. I’m not. 

12:28 Cheryl: I just have — my blood is boiling just hearing this story. 

12:32 Kim:  And that’s not even a one off. That’s, I mean, that is just — that’s the worst. But that is just so typical of just everyone. Most doctors I see are just like, “There’s nothing wrong with you.” 

12:46 Cheryl:  And I think what strikes me is that a lot of the people that that I talked to that have gone through something like this, I guess including myself prior to my RA diagnosis, there wasn’t anything objective that anyone could see. But in your case, you literally had a giant lung nodule, and you also had a history of blood clots. These are serious things. You had a surgery on your shoulder. I mean, you had a medical history, and you had something that was requiring surgery, yet we’re still told, “Well, most people who are tall and thin have a hard time recovering from this surgery, and you just need to stop being so hysterical.” 

13:28 Kim:  Yeah. Basically, basically, “Stop being hysterical. Stop being anxious.” He’s like, your symptoms, I think, like just heavily implying that my anxiety is what’s causing my symptoms. I’m like, I don’t think I’m that powerful. 

13:39 Cheryl:  Yeah. And did you ever have a chance to talk to that original surgeon or —?

13:43 Kim:  So, I filed a complaint with the hospital. They sent me this horrible canned message back saying that since I signed the waiver, basically, I signed away my rights and that kind of ‘sorry, not sorry’ kind of thing.

14:00 Cheryl: Because I know like when I used to work for the University of Washington Medical Centre, and they had a whole department called Risk Management that was supposed to like be on, what’s the word… It was not about punishing medical professionals. It was just for making mistakes. It was about — that department specifically — it was about investigating medical errors or near misses, and cases where people didn’t get treated as well as they should have, and then just using those to educate the doctors and everyone else. And then, of course, punitive things could be, were in like a different system, but like this feels like a classic case where it should have been viewed.

14:39 Kim:  Yeah, no. It’s so funny, I actually have the letter sitting here still because it’s been a year and I don’t know how to fight this anymore. It says, “Our view found that prior to surgery, your physician explained the potential risks and complications of surgery. Your written informed consent was also obtained prior to surgery. We’re sorry to hear you’re having ongoing issues,” and it said, “Our review was unable to identify any deviations from the standard of care and the potential complications were reviewed with you prior to surgery.” Basically like, “We told you that we might screw up.” It was never — 

15:11 Cheryl: Yeah, I mean, but that doesn’t cover him from accusing you of faking, telling you don’t need another surgery. I mean, if you had — it would be interesting to see from the good surgeons’ opinion if you hadn’t driven yourself to the ER, would you have died? 

15:30 Kim:  Probably. Um, yeah. 

15:33 Cheryl:  So, would they say, “You signed something so we don’t give a crap?” Like, no. They wouldn’t want to do that normally, I think. I mean, you’re supposed to use those as like, learn. I mean, again, I’m having this at the end of every conversation I have. It’s like, “If I ruled the world…”, but.

15:47 Kim:  Oh, yes. 

15:48 Cheryl: I mean, maybe that was just because I worked at a teaching hospital. But that was a big focus at University of Washington, at least, was like, okay, we need to investigate and learn from these errors and near misses. So, anyway, so sorry. You shouldn’t have to do the work. Yeah, sorry. 

16:05 Kim: No, and he didn’t even order a CT scan. I mean, he never had — I never had a CT scan post-surgery to even — he couldn’t even comprehend that maybe something had gone wrong. He was just relying on X-rays and X-rays will not show this air tracking that I was having. Yeah, so I ended up also sending detailed letters both to him and to his office manager at his practice, and never heard back. So, it’s kind of like, you know, what do I do next? I don’t want this guy to get away with it. 

16:38 Cheryl:  Yeah, well, okay. I have some ideas. But for the purpose of this, for the podcast…

16:42 Kim: That’s a whole other thing.

16:44 Cheryl: Because the thing is, there are going to be cases — and this is me having — I used to work as the orientation facilitator for the University of Washington. So, I wasn’t in a clinical role, but every other week I got to hear the risk management. This is why it’s so ingrained in my brain. And again, maybe it’s just what they said at orientation might not have been what they actually did. But they had this little video that showed everyone. It was called ‘To err is human’. And like, so it used to be that like, okay, if there was a medical error made, you just fire that doctor, and it’s seen as like one bad apple. But the data shows, right, that it’s almost always like a systems problem. Like, there’s something in the system. For example, the system for surgery, like the classic case of somebody operates on the wrong leg. Well, now it’s like they have checklists where they always double check, triple check. 

17:34 Kim: Sign it, you know, they sign the shoulder.

17:36 Cheryl: And so, the medical gaslighting is so hard, because, again, to err is human, and at times the doctors are taught, ‘When you hear hoofbeats, think zebras —’ or, ‘Think horses, not zebras’. So, in your case, “Oh, you’re tall, you’re young, you’re tall and skinny, you’re young, you’re a woman, you must be…” and yeah, again, that’s an explanation, not an excuse. So, how can the medical system — like obviously, in the case of a doctor yelling at you and accusing you, telling you never to come back to the ER because you’re just being hysterical, like, that is so egregiously wrong. But there’s also, I mean, I’m sure many times of these more subtle gaslighting that you’ve had. Like, “Are you sure? Is this really that bad?” I don’t know, have you had that experience, too? 

18:25 Kim: Oh, yeah. Usually because I am the worst patient of all, my main complaints has been pain. And no one likes to talk to someone with pain, because pain is nothing and yet everything. And yeah. 

18:40 Cheryl:  We don’t have great treatments for pain, you know?

18:43 Kim: We don’t. And there’s no way to see it, and you’re stuck relying on the patient to tell you, and then you have to believe the patients. And yeah, I have — if we get to that two more, I had some more to say about pain in our later… 

18:53 Cheryl:  So, just to tie the loop on the diagnosis. They looked at the nodule and determined it was a rheumatoid nodule, which can happen for rheumatoid arthritis, but you don’t have any other symptoms. Is your overall pain in the pattern of rheumatoid arthritis or no? 

19:08 Kim: It’s kinda yes and no? So, I have pain in my arms, and my legs, and more recently in my hands, and it’s between the joints. So, it’s not like the joint, I’m pointing as if you can see me. Like, the joints themselves do not swell. The in-between the joints, they just ache. And so, I have a lot of just aching, and I will joke with my mom — she’s in her late 60’s — that like all wake up in the morning and just like, “Oh, my God,” I’m just like, “Ughhh,” and she’s just — I ask her, “Do you have pain when you wake up?” And she’s like, “No.” You don’t wake up just kind of like, “Ugh, how did I get here?” So, it’s not obvious and you can’t see it. 

19:51 Cheryl: But morning — having worse symptoms in the morning is a typical pattern for rheumatoid, but you’re definitely — you’re 100% right that usually it’s the inside the joint capsule, it’s not in between the joints. But that could be, maybe it’s that you have that unusual connective tissue.

20:06 Kim: Yes. Yeah, maybe that’s part of it. Yeah. And what pushed me farther into RA was that my rheumatologist is a fantastic doctor that I have here in Charlotte. And he agreed to let me start trying different RA medications to see what worked. I went on Plaquenil first, did nothing; Methotrexate, did nothing — I think methotrexate made me feel worse. But he gave me a steroid taper. And I was like, “I feel like my body is no longer on fire. It has cooled off and relaxed,” and he was like, oh, like, well, that’s pretty strong towards that. So, went ahead and just was like, you know, this is as close as we can get with a seronegative rheumatoid arthritis. And I have started on the biologics recently, and those have also done wonders for my pain, but have made the process disease, that I mentioned earlier, way worse. So, we’re still in medication trials, and probably will be for maybe another year or two. But at least kind of like we have a direction rather than just spinning my wheels.

21:19 Cheryl: Yeah. And when did the paralysis start, the hypokalemic —?

21:23 Kim: Yes, hypokalemic periodic paralysis, just kind of low potassium. That is what sent me to the ER almost two years ago where they found the hole in my lung. So, this is another great example of — I don’t know if you would call this medical gaslighting, but it’s at least being dismissed. 

So, they could not find any cause for that, and went ahead and diagnosed me with conversion disorder, which is literally the modern-day term for hysteria. You can Google that. I was very angry in that hospital because I had three psych evaluations. And this is not to speak poorly on psych. I have a psychiatrist; I’ve seen a psychiatrist for years. I understand my own — more than mental health, I know what I’ve got going on that is diagnosed, and that has been stable. This is not it. I was like, I have never paralyzed myself in an extreme situation. They just kept asking, like, “Are you stressed? Are you traumatized?” and I had been through some really traumatic things recently with work and I was like, “No. Nothing happened then,” and this is about as worse as you can get at something to happen at a school with weapons, and I had been through it. And no, I did not collapse then. 

I was like, “This is not mental.” And I kept having more episodes after I left the hospital, but the lung got priority. I went to the ER a few times; they couldn’t figure it out. I even had one coming out of surgery, I had a paralysis attack. I had a neurologist at that research hospital to see me habit and still go, “Yeah, that’s conversion disorder.” So, I just dropped it. No one wanted to do anything about it. But what I did instead is I kept a spreadsheet of every single attack that I had, with the time, how long it lasted. I put down what was I thinking about before it happened, which was usually just nonsense, and any other details like whatever I did that day that I could come up with. 

23:24  And then last January, which would be a year and a half from my first attack, I gave it back to a neurologist, and he was like, “Oh!” I finally figured it out, and now I see a specialist who specializes in this disease. And yeah, I’m pretty classic. 

23:41 Cheryl:  And you said it was genetic? 

23:43 Kim: Yes. I don’t have a known gene, but they have identified about 70% of the genes, I think, that go with this, or 70% of people who have this disease have a gene. So, there’s still quite a few of us who don’t have it. But to show the rarity, this disease only affects less than 5000 people in the entire United States. 

24:04 Cheryl:  Yeah, and that’s — yeah. Well, I mean, I think just the experience of being told — I was told I was just anxious. I was dismissed many times. “You’re not sick. You’re a hypochondriac.” But I was never formally diagnosed with conversion disorder, and that would have been so traumatic for me. And again — because I’m sure there are some people who legitimately have it — but to be inaccurately diagnosed with it, to me, it means that it slams the door on them pursuing other alternate explanations. 

24:35 Kim:  Yeah, and I was still having paralysis attacks, and at that point, when I would become paralyzed, I literally cannot move. So, I would not be able to move my legs at all. It would last for about two hours or so, then it would wear off.

24:49 Cheryl:  Does it affect other muscles like your trunk or your face?

24:53 Kim: Yes. It can go for the full body. I had my first one there. I did go to the ER for that one because my entire body froze. I couldn’t move anything. I had lifted up food on my fork to put to my mouth, and just froze. Everything. I could not even speak. I was so paralyzed. But it usually stays away from your ability to breathe, blink, like in your internal systems will still work. For some people that doesn’t. But in general, you’re just frozen because what potassium does is it helps you contract your muscles. So, all these tiny — as you’re listening to this, think about all the little movements you’re doing. Like, you move your hands, move your head, anything to do. You’re not even thinking about the fact that you’re doing that. Without potassium, you can’t. There’s no response. You say, “Move,” and there’s just no communication. It’s pretty terrifying. 

25:47 Cheryl:  That’s one of my phobias, like my cleithrophobia, is fear of being trapped. And that sounds exactly like it.

25:56 Kim: Yes. I’d have many meltdowns because… Yeah.

26:00 Cheryl: And that actually leads — so, I’m going to switch the order of question, but yeah, that leads me to the mental health aspect of all of this. I mean, just going through one of these experiences alone would have been hard enough, but all of the aggregate things you’ve been through, how has it affected you mentally and what has helped you cope? 

26:21 Kim: Yeah, definitely. So, I’ll go with coping first, start on a positive note. Medication. Medication is truly the only thing that is keeping me functioning. I’m on a few different SSRI’s, some other mood stabilizers, and what they do for me is, I call it my brain shield. It is like a mental shield, where all of those really — your anxious thoughts, your spiraling, if you have ever spiraled with anxiety where you just feel like you just cannot focus. It doesn’t necessarily have to be a panic attack, but you’re just frantic, and nothing’s going to calm you down. It prevents my brain from going too far past that to where I would become incapacitated. So, that absolutely. And then I have seen a therapist. Luckily, I saw her before all of this happened, so she is now just part of my chronic illness, just someone I can talk to you about with new symptoms, new diagnoses, frustrations with doctors. Someone who can help validate your feelings is wonderful. 

27:23 Cheryl:  So good. So good. 

27:25 Kim:  Yes. And then, on the downside, this is also because I have struggled with really extreme pain since I was seven. And at the time of this recording, I’m 33. So, it has been… My entire awareness, existence, has been pain. We thought they were migraines when I was younger, but at a pain level of where your child is screaming in bed, throwing up, crying, nothing can make them feel better. I mean, just the pain is excruciating. And I have kept a journal since I was little, since I was 13, and to the point where I would just write down like, “I had a headache today,” and then just go off at whatever else I did today. That is just how normal it is. It averages out to about 15 days a month, which is just 50% of the time since I was seven. This is just my normal. So, I’ve already got that going on. 

28:20  When you start piling in — I had a, it’s called clinically a saddle pulmonary embolism. It means that you had a blood clot go to your lungs and block both major bronchiole, whatever’s in your lungs, your lungs are fully blocked. You should be dead. I survived that when I was 23. I had found another clot, caught it this time in my leg, when I was 26 or 27. And then to that too, suddenly now I’m having this paralysis and a hole in my lung. It is just a build-up of, I never get a break. I never get a break from illness. It is just a constant battle with this body of either just pain or sudden life-threatening chaos. 

29:07  So, something that I want to talk about here, and I want to give big trigger warnings for people, because I want to talk about the really dark sides of mental health and what your brain can kind of do to you when this happens. And I do have diagnosed generalized anxiety disorder. I’ve just got a lot of anxiety. I blame my genetics on that one also. Yeah, but I want to talk about — and I’m not even sure I had an even better idea of how to bring this up. 

But I’m going to give a trigger warning for discussion of suicide. And I want to give everyone who’s listening plenty of time as I’m saying this, that if you feel like you need to, again, you want to turn that dial down, mute your listening device, if you’re running across the room trying to get back to whatever your control is to turn it down, hopefully you’d have enough time now. 

But the reason I want to talk about suicide and suicidal ideation is that if there’s anyone else who is listening to this, who is struggling with this, I want them to hear my experience with it so they don’t feel alone, because I have felt so alone with this. Because you cannot just go up to someone, you know, you can’t just tell someone that you’re like, “I’m feeling suicidal.” They’ll panic and wonder, you know, “Do I take you to a hospital?” and you’re like, “No, it’s not that bad.” and they’re like, “What?” And I did not learn until probably the last couple years that this idea of suicidal ideation exists, because I’ve had these thoughts literally since I was seven. When you’re lying in bed in so much pain, you just want it to end. 

30:42  So, with this discussion of suicide, I also want to put in a very strong disclaimer about disability and suicide. And I know that there is a long and horrible history of really horrible times and human experience where the disabled have been killed for being disabled, or sick, or ill, or viewing people who are ill or disabled as having less value. 

So, this is not a value discussion of human life. This is talking about suffering. But I also — since we both have an anthropology background — is something that anthropologists do look for in human evolution and society development is actually healing in humans. So, if they found a body where a bone has healed, or they have found structures that are used to carry maybe the old, or the people who are unable to walk, that that is a huge sign that cooperativeness and group societies are forming, and we’re doing better together. Because for a bone to heal, it means that that person had been allowed to rest for at least six weeks for that bone to heal, and others are taking care of them. So, there is good. People do help. I just wanted to lay that out there as well. 

32:01  So, with this discussion of suicide and being ill, for me, it is a way out. It feels like I have some sense of control. And that if, you know, it comes to the end all be all where I am just in so much pain — and that’s what I’m getting at for these suicidal feelings, it’s around suffering. It’s not a thinking like ‘I’m worthless’. It’s not thinking that I am just — I mean, there is some of that, you know, sometimes I do feel like a huge burden on everyone who has to take care of me, but more just to end suffering. 

32:39  So, I also want to talk about with suicide prevention and harm reduction, that healthcare — access to healthcare — is harm reduction. Free access to healthcare is harm reduction. Even with my health insurance, I still pay $6,000 to $8,000 a year, and have for the last seven years on healthcare. And I can afford that. And I know I’m very privileged for that, and I’m terrified of the day that I may not be. So, in addition to that, having free, safe, clean housing, access to food, jobs, physical support, either of that may be like devices or technology, accommodations at work, public government programs, relationships, these are all suicide prevention and harm reduction. 

And I think these are just all so important to talk about; that, you know, I did have moments where I locked myself in the bathroom and just decided I had just had it. I was not — I did not, you know, want to kill myself that night. But I just felt like I had no more options. I had nowhere else to go. No one was believing my pain and my symptoms, and I was just tired, and I just had it. So, anyone listening, if you have felt that, please know you are not alone. There is nothing wrong with you. This is a very normal thought process to have. We know all the places online, but for me what has helped is having a therapist and finding the people who get it, and even that is part of a barrier to even find the people. So, loneliness too. 

34:16 Cheryl: Yeah, no, and I’m so grateful for you, again, that you’re willing to speak to this, because like you said, there is such a lack of awareness around it or this idea that people who feel suicidal ideation — you said it perfectly and more better than I could — but that they feel that they’re worthless, or feel that their life doesn’t have meaning. 

But I feel like when I think about it in terms of chronic pain, it’s their chronic illness. It’s almost like you want to have a life, you want to live. You want to have a full — I mean, I can tell, just knowing who you are, you have a vibrant personality, you have so much to give to the world. But you have this giant weight on you that’s just preventing you from being able to have a pain-free existence. And that’s a lot to deal with. 

35:06 Kim: And you feel like you have to hide it too. It’s been really shocking within this last year that I’ve had — so, I am out mostly at work with my illnesses. It just helps people understand me also. If I’m going to be paralyzed at work, people might as well know what’s happening so they don’t panic also. But I have had so many people, even doctors, be like, “You’re taking this so well. How are you handling this so well?” And I’m like, “This is a trauma response.” Because no one wants to actually see how poorly I handle this sometimes. 

And since I live alone, no one sees me crying at night, reads my journal entries that are very — they’re heavy, you know. I’m talking about how I just don’t want to be alive anymore. I don’t want to keep going like this, that I’ve had all of the things that I used to love doing taken away with me, that just this body has failed. And I think we need to have more open discussions to, first, around this need to hide these feelings and to be more uncomfortable — be more comfortable with being uncomfortable. Because it also was like, “Well, she’s taking it so well. Why can’t you?” because no one sees your darkest hours except for maybe a few close friends. 

36:19  And then, second, is to kind of see bodies, again, as not these moral value things but as a tool, and sometimes they fail. And sometimes the body just does not work how everyone else’s does or how you want it to, and that’s where we need to have room for discussions of bigger things to do, like better pain management, better support, better reduction in suffering, and then accepting that I don’t think people should have to live in a body that causes them so much pain. I’m hoping that we, in this country, can get more open discussions of like the right to die, and just allow people to not see death as a failure; of like a moral failure, of value failure or, you know, we have so many different belief systems. But sometimes, death is a way to end suffering, and we should be able to talk about it more. 

37:18 Cheryl: Yeah. I know there’s been more awareness of, you know, deaths by suicide that are related to forced weaning off of opiates, you know, in the chronic pain community due to the opiate crisis. Actually, the opiate crisis, for the record, does not have hardly anything to do with chronic pain patients. They are not the abusers. And again, anyone who abuses drugs also deserves compassion.

37:42 Kim: Yes, and they need a different set of management that speaks to — just because they’re also trying to usually reduce some sort of pain. We don’t know what it is, whether that’s just they don’t like, you know, a bad life situation, poverty, trauma, abuse, there’s so much humans are hiding. We’re all hiding so much, then we get into problems where we need help, and that we need to help everyone and understand how to help everyone, but we can’t if we’re treating everyone like, again, criminals; criminals as ‘bad’. These value judgments on people has just got to drop. 

38:16 Cheryl: Absolutely. Yeah. And, you know, when you have talked to your therapist about this, has there been anything that they’ve said that’s been helpful? Or is it more just — 

38:29 Kim: It’s mostly validating. She just really helps ground me and helps me to be like, “Yes, of course you feel that way. I would to. You absolutely should.” And I think that’s most important for me, because what I need is to feel validated. I need to feel that my feelings are real and that most people would feel this way, because I often feel like I’m just overreacting to everything because I have lived in a traumatizing body my entire life. I can’t even see what a life is like without that. 

39:01 Cheryl: No, I mean, it just relates so perfectly to what you’re talking about earlier with, you know, medical gaslighting by definition is a lack of validation. It’s saying, “You’re not sick. Your pain is not real. It’s not that bad.” And then it can lead to — it doesn’t always — but it can lead you to gaslight yourself. 

39:22 Kim:  Yes! 

39:24 Cheryl: I honestly think like some of my friends with chronic illnesses are some of the most mentally strong people I know in terms of having to cope with so much pain and suffering. And yet, we’re the ones that actually question ourselves, right? Hey, like, “Is it really that bad?” or like — or I’ll have people comment things to me, and this is a totally different issue, but like, you know, I’ll be dancing in a video and they’re like, “Well, your RA must be like, really mild if you’re dancing.” I’m like, “Well, you don’t know how much pain I’m in when I’m dancing.” Obviously, I’m not at a 10 on 10, like I am not —

39:56 Kim: Yeah, it fluctuates.

39:56 Cheryl: Yeah, it fluctuates, and dancing is like a way to help, like, move my body. But anyway, we gaslight ourselves and at the end of the day, we don’t really know what someone else’s pain feels like. We don’t, you know. 

But yeah, I mean I think, in my emotional and mental health past, I have struggled with that fear of being trapped and I have had that fear, or that feeling, of when I’m trapped in my body, when I have a lot of pain and discomfort in my body, I’ve never conceptualized it as like suicidal ideation in my case, but just to share a little bit further that, you know, this conversation about this, it’s the feeling of ‘I have to get out. I have to get out’. 

There’s a knowledge in my head that there are ways to get like that, you know — I’m at the point where something has to change. Like, something’s got to give. I can’t handle any more of this. That was where I was at a few years ago when I had a whole bunch of stomach issues going on on top of, yeah, where I just couldn’t digest, I was wasting away. And I was just like ‘I have to get out of this body’. I kept having this vision of a head transplant like, placing my brain onto someone’s body. And it’s a horrible feeling to feel trapped in your body. I mean, that’s ’cause you — it’s the thing you can’t get out of, right? I can’t leave. It’s just me. Everywhere I go, there it is. Did you have any of the same —? 

41:29 Kim: Yes, so much. I made a note of that, yes, because that’s where a lot of where I just like, I can’t escape. And knowing that there are people out there — most people don’t know what that’s like. Most people, especially young, do not know what it’s like to be in a body that has tried to kill you a few times, or that it just causes you so much pain and suffering, and they can’t even conceptualize what that is like. 

And what I try to do when I try to advocate for myself and do educational things is that becoming disabled, becoming ill, is the one thing that can happen to any of us at any time. In general, we’re not gonna wake up looking really different, our ethnicity is probably not going to change overnight, we’re probably not going to change into a different other community that we weren’t born into, you know, it’s hard to say that clearly. But anyone can become sick and disabled at any moment, at any time. So, when they see it happening to someone, they are just reminded that this can happen to them. 

42:32  So, something that I hear a lot that I try to push back against, and even some of my people close to me will say this. They’re just like, “Well, you know, I eat really healthy. I’m really healthy. I’ve never been sick. I exercise, I do X-Y-Z,” and I just want to tell people that matters, but it also is not going to stop your body from doing things. Because what you end up saying is you’re implying that sick people didn’t do all of that, and that it’s their fault for getting ill, when right now, it just seems like your genetics are just gonna do whatever they want, whenever they feel like it. And also, you just don’t know. You do not know what you are carrying, and you might be carrying horrible things that never turn on, you might be carrying things that just randomly — 

43:14 Cheryl: We just all want that sense of control. It’s a comforting thought. And that’s like my therapist, the most helpful thing that my therapists have done, ’cause I have a psychologist and a psychiatrist, that have both done full hour sessions of therapy — ’cause some psychiatrists do therapy and some solely do medication management — and they’ve really helped me really acknowledge and accept that. Accepting meaning, like in the book that I read about all this, ‘The Happiness Trap’, it’s like “taking what is offered.” It doesn’t mean that you’re happy about it. It just means like this is it. This is reality. 

And connecting to that and being like, the reality is, I did quote-unquote ‘everything right’ with my health, right? Like I was active, I ate well, I exercised, blah, blah, blah. Yet, I still got this and there’s no necessarily deeper meaning in it. The more you try to find the meaning, it’s just an illusion. It’s just like, life is random. Babies get lung cancer. They haven’t smoked or anything. It just happens. But people don’t want to — it’s an inconvenient truth. 

44:16 Kim: Yes, yes. No one wants to consider their own mortality. And we scare them because we’re just daily reminders that it can happen to you. Like, for me, for being very thin. So, I also know that — I wasn’t even going to go into this — but like, I have thin privilege. I have talked to a lot of chronically ill friends who are not thin, and whose doctors are like, “Well, I just think it’s just your weight.” So, I think doctors look at me and I think I actually anger them by being very thin because they can’t blame it on that. So, it screws up their whole perspective. Like I have as much pain as I’m sure people who carry more weight than I do come in, and it’s like, what’s my excuse? Maybe I actually just hurt.

44:59 Cheryl:  Yeah, maybe they’re in that — yeah, maybe there is a limit. And no one wants to think about their own limits, right? No person wants to, but I think all medical providers at the end of the day, if they’re really being honest with themselves, like acknowledge that there is a limit, right? We can’t right now, medical science isn’t evolved enough to be able to make every person who’s had a spinal cord injury walk again. They know that.

 And even like rheumatology — and I will say for the record, rheumatologists as a whole, I think, are some of the most patient-centered and least likely to gaslight of like any profession, maybe second to pediatrics, but pediatrics can sometimes, just because they get so many parents that are objectively overly worried, you know. But then they also get parents that are legitimately worried and then they get dismissed as being hypochondriac parents. But anyway, I think rheumatologists, because of how ambiguous like the profession is in terms of like, “Well, it could be lupus, it could not,” like they’re —

46:03 Kim: Right. It’s so systemic.

46:05 Cheryl: They have to acknowledge that, like, “we don’t know, for sure.” It’s interesting, I’m not sure if you’ve ever had this before, but I think one of the best things a doctor told me once was like — it was an ophthalmologist, I have really chronic dry eyes, I was never diagnosed with Sjögren’s. Who knows, I might have Sjögren’s, I don’t know. Maybe it’s in my chart somewhere. But all I said was, “I have dry eyes,” and they felt — I know it was explained to me as it’s related to your rheumatoid arthritis. 

And at one point, I got an ophthalmologist, we had tried different things. And he goes like, “This is it. We’re at the end of what I can do for you. Like, we’ve reached the limit,” and it wasn’t like a, “Go away little girl, I don’t care about you,” it was just like, “I know that your eyes are still drier than you would like. And like, these are the things I can provide, that I’ve provided. Like I’ve provided these eye drops, and done these tear duct plugs,” he’s like, “And I just need to tell you, there’s like nothing more that I can do. And most likely with any other provider, and this might be something you have to live with.” 

It’s interesting, ’cause I’ve seen on social media, some patients get really upset when doctors say that. First of all, everyone is like, totally, totally should have, you know, ownership and empowerment to accept and embrace their own feelings about any situation. So, I’m not saying because I felt this way you should. I felt like this person is being honest with me, and they’re saving me time and money, right? Because if they just said, “Well, come back again in three months, maybe something else I could do.” You know what I mean? 

47:38  And I know, in the chronic pain community, this has happened too, where I have a friend who lives with chronic pain from fibromyalgia. She’s an occupational therapist, she was in Episode Three, I think, it was. She’s a pain science — she has a Master’s in occupational therapy, PhD in psychology studying pain. And she’s like, “So many patients,  no one ever just tells them like, we might not be able to make your pain go away,” and that’s really like — and we can say, we can always hope for more better treatments, like, hope but we’re not gonna like give up, right? That doesn’t mean, like all researchers, because there’s no cure for pain right now, all researchers are just gonna be like, “Okay, pack up and go home.”

 But like, for today, and tomorrow, and the next day, like in this current existence where we don’t have a cure for your pain, what can we do to maximize, like in the OT lingo, maximize your ability to participate in your life, have a meaningful existence, and cope, and persevere with this pain? And it’s like a relief to some patients to hear that because they’ve been reinforced by this system that’s like, “Oh, you just need to go to the next person,” or, “You need to go to the chiropractor. You need to try the supplement. You need to try the diet. You need…,” I don’t know.

48:43 Kim: Yes, acupuncture… I joke that the only thing I have not tried still is an exorcism. 

48:49 Cheryl: Oh, like, yeah.

48:51 Kim: That’s the one thing I think I have not tried. Because, yeah, you get the ‘Have you tried…’ and like, you don’t even want to hear my list. But whatever you’re going to suggest, I’m three decades past that.

49:01 Cheryl:  Well, and I think in your case, particularly when you have co-morbidities like, you know, the first thing when people talk to me about diet stuff, I’ll be like, “Well, I have a history of gastroparesis,” and that automatically limits because — and a history of severe SIBO, which is small intestinal bacterial overgrowth — and so, yeah, it’s like, a vegan diet. Sounds great. If RA was my only issue, I’d probably try that. But I can’t digest a lot of insoluble fiber very well, and that’s only just two co-morbidities, right. In your case, you have several co-morbidities, meaning like different conditions and histories. So, it’s not just — again, everyone wants to think that it’s simple. I’m sorry, I’m talking too much. 

49:37 Kim:  No. And then they think that they would do it right. They want to feel that if this happened to them, they’re like, “Well, I would eat vegan so either a) this will never happen to me,” and this is not a discussion on vegans. We’re just picking one group that eats differently.

49:49 Cheryl: I’m like jealous. I want to be a vegan, I just can’t.

49:53 Kim: Yeah, but either, “I would make better choices, like either I’m already making the good choices. This will not happen,” or, “I would make better choices. I would not suffer as much as you do. It’s your fault.” And yeah, so with food, I was first like, food has no moral value food. No moral value. You need to eat to sustain your body. Yes, because for my paralysis disease, they tried to tell me to eat a specific diet, and I have had to tell them, “I absolutely cannot do that.” I get some disordered eating because I have been obsessive over eating clean, because I was not getting any relief anywhere. So, I fully bought into for a year of like eating no processed food, cooking every single thing from scratch, only meats, fruits, vegetables. And I did not get better. 

50:41 Cheryl: That is such an important story to tell. 

50:45 Kim:  Yeah, so I’m like, no. I will not obsess over food. My only goal with food is to eat. 

50:50 Cheryl: And you’re actually — so, this is Episode 41 of the podcast. You’re the fourth person who’s brought this up. I’m saying that not in terms of like, “You’re not a unique snowflake,” but I’m saying in terms of for other people, that this is a common thing, to become obsessive when you when you have so much out of your control with your health, that you then find food is one thing you can control. It’s one of the most primal things. Like from when you’re a baby, you can choose to latch on to the breast or you can kind of move your neck. Unless someone else is thinking of newborns, then everyone’s like, “Just shove the breast into their mouth,” or, “Shove the bottle in.” Anyway. 

But in general, it’s one of the few things that you can control, truly like control, that you can put in, if you have the privilege of being able to like digest and everything like that. So, everyone just, yet again, a lot of people make it seem so simple. “Oh, just try that. Try this specific carbohydrate diet. Try that Keto…”

51:43 Kim: Or autoimmune diet, or that current fad. Yeah. 

51:45 Cheryl:  And again, it’s all about workability when it comes to “Acceptance and Commitment Therapy,” which is how I like, live my life. It’s like, if something works for you, it works, right? So, if vegan works for you, that’s awesome. If the Paleo Diet works for you, that’s awesome. Do whatever works. But don’t tell me that what worked for you is 100% gonna work for me, ’cause that is not — it’s kind of like finding a, I guess, like a dating partner or something. There’re people who are like, “Oh, just go to a bar, that’s where I found mine”, “Oh, go on match.com, go on this.” It’s like, this is honestly — okay, I’m sorry. We’re going on rants now. 

52:16 Kim: No, I love it. 

52:17 Cheryl:  That’s the goal of this podcast! No, but I’ll say like, about the diet thing. I mean, again, it’s important to look at data. There is a lot of research, particularly for the Mediterranean diet, just for the record, if your only issue is rheumatoid arthritis. You know, whole food, plant-based, Mediterranean style diet is great. 

52:33 Kim:  And I’m allergic to fish.

52:35 Cheryl:  [Laughs] Fun for you. 

52:36 Kim:  [Laughs] So, I can’t do that. 

52:38 Cheryl:  But also, let’s say somebody tries this diet, and they go into remission. They start selling classes and selling, you know, ways. I’ll say: “Would you take a class from somebody who won the lottery on how to win the lottery?” “These were the three steps I took to win the lottery. I went to the gas station, I got a ticket, I randomly guessed numbers, and I won the lottery.” It’s like, just because someone did these steps and something happened to them, doesn’t mean that those steps are what caused it to happen, right? It’s correlation versus causation. So, you know, I mean, again, no one wants to acknowledge the role of luck, you know.

53:10 Kim:  Yes, yeah, and just happenstance. I have a really another great metaphor that I just thought of from what you were just saying, that something that I wanted to work into this was a discussion of equity. And I’m gonna tie this back into a really good metaphor, but basically, that what works for one person is not going to work for everyone. And I learned this in a discussion group I’ve been having at work all over summer talking about diversity, equity, and inclusion, and that it seems like as a country, we’re really starting to understand diversity and inclusion, but equity, we’re just not getting to. 

So, equity versus equality. Equality is that everyone has the same opportunities at all times. Great. Equity is basically understanding that people are not always starting at the same point. That there are things like the money you have growing up, a healthy body, just different barriers, amount of trauma you might have experienced trauma, you’ve never experienced, these are all things that change where you start and where you come from. And that equity is supposed to get anyone who maybe had to start behind where others did back up to that point. That’s not equality. It is getting everyone to an even field. 

And the best metaphor I’ve ever heard from this is that if you were to walk into an ER right now and survey every single person that’s in there, you would not want to give every single person an aspirin. That is not going to work for everyone. For some people, it might. For some people, that might help reduce a heart attack, it might bring some pain down, but there are people who are horribly allergic to NSAID’s that might cause a really severe reaction. There’s people like me who are on blood thinners and are not supposed to take NSAID’s with the risk of causing more internal bleeding. And just that this idea that this one thing that it’s, “There’s nothing wrong with an aspirin, it’s an aspirin. Everyone, it’s a joke, go home and take it aspirin.” But not everyone can take an aspirin, we cannot treat everyone the same. 

55:12  And it’s easier to do that, right? It’s easier to just say, “Everyone gets an aspirin, and everyone’s gonna be better,” because it’s a lot harder, it takes a lot more thinking, to have to look at everyone individually, understand them. And I try to remind myself of that when I’m seeing medical professionals and trying to talk to them, that they are doing a lot of work, but it’s still scary. If you know, if they’re like, “Well, take the aspirin,” I’m like, “That might harm me.” And then they just kind of shrug their shoulders and go, “Well, that’s the only option you have.” That we need more things to bring people up to equitability, you know. That’s why the Americans with Disability Act exists for all of these things. And that all of this, again, ties back to harm reduction, suicide prevention, is giving people equitable everything. 

56:01 Cheryl:  Yeah, it’s really like, I love the phrase of ‘going upstream’. You know, instead of if you see a bunch of little, let’s think about cute, furry little animals that are drowning in this, in the water. All of a sudden, you can sit there and rescue them one by one and take them out of the water. But eventually you want to go upstream and say, “What’s causing that?” Yeah. This is all so — I’m hoping that everyone listening is just finding this as interesting as I am. 

56:29 Kim: Yes, yes, but go look up equity. And I think you’ll really see where maybe some of your own like, kind of bad feelings about the world and your treatments are. I think it’s really — because equity is hard. Because equity also has to admit that people have more difficult backgrounds than you do, and you are forced to look at your own privileges. And that makes people really uncomfortable and feel really awkward. We’ve seen it with socio-political politics in this country and everywhere, forever, and probably will forever, but we’re always trying to get a little bit better. That, you know, if you can at least help one person, that is still doing a lot, because you hear a lot, you know, the needs of the many outweigh the needs of the few. Well, the few still need help, too. And I hope we can really figure out how to do both of those. 

57:22 Cheryl:  Absolutely, absolutely. Yeah, I know that something that I think a lot of people are curious about when they have a new diagnosis is like, “What is a day in the life look like for someone with my same condition?” Now, I don’t know how many of you have the 5000 people that have hypokalemic periodic paralysis, and RA, and connective tissue abnormalities. But, you know, in general, what are some of the ways that it impacts your daily life? I mean, you mentioned you’re able to work but have you had any accommodations or modifications? And then how have you been able to do some of the things that you still love to do that bring your life joy, like fostering kittens and stuff? 

57:58 Kim:  Yes. So, I’ll start first with the daily life. It’s actually one of your TikTok’s, it’s exactly it. You have a TikTok of where you’re laying out all of the things you have to try to make your day better. That has basically been my life. I didn’t even realize how much I have done. But basically, I have comfort items everywhere. So, heating pads are one of the best things for me. I actually have two of them stuck to my shoulders right now that they’re always there. Helps my headaches, and shoulder, neck, upper back pain. And soft blankets, packs of painkillers, anything that’s going to make my body just a little bit more comfortable, I carry that around with me and I carry with me at all times. So, basically, anything from the pharmacy, I’ve got it.

58:49 Cheryl: So, you have a little backpack or like —?

58:51 Kim: Yes, so now I have a full little backpack that also supports the paralysis because I have to carry water, a water bottle, fizzy potassium — it dissolves in water — to drink during a process attack, and something to make it not taste oh so horrible, it’s like little Propel packets just to kind of flavor the water with because sometimes they come in really fast, like 10 seconds, and I’ve got to get that kit put together and in my mouth before I freeze or just drop to the ground. I try to laugh because it’s so preposterous, but I’ll be walking and then just down I go, and I can’t pick up a leg until it… 

59:32 Cheryl: And I’ll tell you like again, because I am so aware of the stupid things — or sorry, the unhelpful things, not to say this. But I have to tell you that the cognitive dissonance, I’m feeling it right now. I’m thinking in my head as you’re talking, “There has to be something. There has to be something. Like, have they tried everything?” But I’m like, “Oh my God, this whole interview was about this.”

59:55 Kim:  Really compulsive helpers. 

59:58 Cheryl:  I know, but I’m like, can they just inject it? Can you just like, inject potassium?

1:00:03 Kim:  That’s more dangerous because too much potassium can stop your heart. So, it actually took me months to even get to even get liquid potassium because they were so afraid I was gonna kill myself by taking too much. And I have taken really high doses from it, and my body will just reject it, like it does anything you consume. 

1:00:23 Cheryl: Yeah, you don’t need to explain it. I’m just telling you that —

1:00:27 Kim: No, I’m happy because I want people to hear. 

1:00:28 Cheryl: Oh, good. Okay. I was using it as an example of like, even someone who spends their time educating other people, “Don’t give unsolicited advice.” But I’m like, it’s so hard not to believe that there’s a solution, like, it’s my optimism, you know what I mean? There’s like a part of my brain, even though I’ve been through so much, and I know that there’s — I literally just said five minutes ago, there’s not a solution to everyone’s pain. But I’m like, the five minutes later, “But there has to be!” Right?

1:00:56 Kim:  What I’ve tried to do to work in is if I hear anyone talking about trying to explain symptoms, and I’m feeling that compulsion to say, “Well, have you tried?” I have tried to change it to, “What works best for you? How do you get relief?” to put it back on the person to say, like, for me, it’s heat. Drinking water is not going to make a difference. You know, they’re like, “Have you had a glass of water?” and I’m like, “It doesn’t matter.” You know, to say that’s heat, being able to sit down and rest. Movement helps sometimes, sometimes it makes it worse, or just asking for the consideration that like my diseases are very inconsistent. 

1:01:36 Cheryl: That’s one of the other hard things.

1:01:38 Kim:  Yeah.

1:01:39 Cheryl: I feel like I’m always like giving people this like truth with rheumatoid arthritis. Like, I’m going to tell you what I have in my flare-up toolkit, but I will not give you the illusion that if you just have a flare-up toolkit, you’re always going to be able to prevent a flare-up because sometimes flare-ups are just random. They just happen. I just got to go home. 

1:01:55 Kim:  Yeah, sometimes drops, don’t know what it was. Don’t know how long it’s gonna last. 

1:02:00 Cheryl: And that uncertainty is so hard for people. So, you have your backpack that you bring with you. The potassium packs and the water bottle, and your pain management. Okay. 

1:02:11 Kim:  Yeah. And the daily life too is, I’m sure it has been talked about on this podcast a lot, I think it was so life changing for us is that Spoon Theory. And I didn’t realize that I have been doing that since I was probably six or seven, that I do throughout my entire day. I’m always questioning like, “Okay, well, if I do this, I can’t do that,” or like, “Okay, well, if I go over to a friend’s house, that means I probably need a break later. And I probably shouldn’t do this or that.” I even just within my own home recently got rid of all of my glass and ceramic dishes and moved back to plastic. I just kind of went, “You know what, I don’t think I’m gonna die from eating from plastic. It is light, it does not hurt. And if I drop it, I will not hurt myself.” Right now, plastic is safer. So, trying to right now find all these little shortcuts. 

1:02:57  Also, another thing I do is I pace myself. I plan ahead for myself to make mistakes. I know that I’m going to make mistakes. I know that I want to go somewhere and I’m not going to have my heat pads. I’m going to have forgotten a pain medication. I have squirrelled away things everywhere. I keep full backups in my car, in my office, in my apartment. I live in a tiny apartment. I have a full set of things I need in my bedroom, at my workstation, and at my couch so that it’s just always there. And then there are backups hidden everywhere, so that basically trying to foolproof myself so I can’t make a mistake. 

1:03:35 Cheryl: Yeah. Oh, that’s so smart. That’s so great. Yeah, again, I think a lot of times, I think to myself how being an optimist is not helpful for me because, for example, if I go on vacation and I packed my medications, my inclination is to be like quote-unquote ‘efficient’ and to be like, “Well, I’m just gonna bring exactly how much medication I need.” But yeah, chronic illness has really trained me. Like, nope. Bring a full set of extras, everything. You don’t know whether you’re going to get delayed, you don’t know whether you’re going to throw up, or your medication boxes gonna get stolen, like, you know, so you have these things.

1:04:06 Kim:  I just got fully burned by that. I went on my first vacation. I went home for a week. This is the first time I have gone anywhere in almost two years because of the illness and then pandemic. And, yeah, everything just went off kilter. For one, you know, you got to plan for things you don’t know what’s gonna happen. The fires out West have blown smoke into Illinois, and I was struggling to breathe, and that was making my paralysis worse. It was making my pain worse. So, I blew through like two months’ worth of stuff in a week, that I was like, “Oh, I’m glad I brought it all but it still ran out,” and sometimes I am grateful for monopolies and being able to call a chain pharmacy, and just did a transfer, get it that day. Boy, they’re like, “Why do you keep calling me?” I was like, nothing went as planned. But again, I brought backups and I hid my backups because I thought I had run out of my potassium. And I was like, I’m not gonna be able to get home. I don’t know what we’re gonna do. Because I had brought an entire box which, where I am at my home in North Carolina, that would last me a week or two. And I had blown through it. But I had squirrelled away backups into different bags. Like, each bag I have has a handful of these potassiums. So, I found my whole stash, and I just kind of had to pool it together and then I’ll go squirrel it back out. So, yes. Have backups.

1:05:30 Cheryl: So helpful. And what about some of your hobbies or things like rescuing the cats? 

1:05:34 Kim: Yes! Yeah, so a fun thing, I actually started doing this before I got ill. I was volunteering locally at a kitten nursery, which is literally as magical as it sounds. And I volunteered with what they’re termed neonatal kittens, which is basically a kitten from day zero hours, zero to about four weeks. So, these are babies that are fully helpless. They have to be fed on a bottle every two to three hours around the clock, and they need assistance to go to the bathroom. They have to be cleaned because they’re always getting dirt messy.

 So, with the pandemic, that all closed and they ended up going into our homes. I started fostering these baby babies, these two- to three-week-old kittens at home. And that was really helpful because I have had to do this pandemic — again, for anyone listening now, it’s summer of 2021, pandemic’s still not over — I have had to do the last year all by myself because I live alone and was not safe being in public. So, having the kittens, it gave me something to do. It made me feel like I had a purpose again, you know, like, they need my help. They don’t care what’s wrong with me. All they care is that they are warm, they’re dry, and they’re fed. So, that was wonderful. I’ve done about seven rounds. I just turned in kittens like nine and 10 a couple weeks ago. 

1:06:57 Cheryl: Oh, my gosh. 

1:06:58 Kim: So, it’s a wonderful. If you like kittens and feel like you can do this, I highly recommend it. I learned everything I know from Kitten Lady on YouTube. 

1:07:07 Cheryl: Oh, okay. 

1:07:09 Kim: Kitten Lady, I think that’s Hannah Shaw. She’s fantastic.

1:07:14 Cheryl: And I think that’s so important to always find ways if you can, obviously, some people can’t, but if you can find a way to still connect to your valued hobbies and activities, whatever makes your life meaningful, whether that’s work, or family relationships, or baby kittens. 

1:07:32 Kim: Yeah! ‘Cause it’s quiet, they just need somewhere to sleep on and be warm. It is a lot of work, there’s a lot of intermittent works. You can rest in between, and when they’re bigger, they just run around and pretty much take care of themselves. So, I found that that worked for my system. And too, being lonely, it made me feel less alone. Like I had, you know, I can’t go out and talk to people, but I have something to take care of. 

1:07:58 Cheryl: Right, right, right. Oh, my gosh, I just love hearing about your kittens and about the things that make life meaningful. Before we wrap up —

1:08:04 Kim:  They’re magical. 

1:08:06 Cheryl: Yeah, they’re so magical. If we have time, maybe put some pictures in. And then, before we wrap up, is there anything else you wanted to talk about on any of these topics? 

1:08:15 Kim:  Yeah, so another theme that we’ve had today is this trying to get away from discussions of like value and moral placement on things. And I want to end on talking about pain and a better way to talk about pain. Because, you know, we try to give it that rating scale of a 1 to a 10, or they’ll try to give it very specifics of like, “Well, this feels like a that, and that feels like a this,” of like, you know, “You broke your arm. That’s a 6. You had gotten a horrible car accident. That’s a 10.” But getting away from that, and instead, the best pain descriptor or scale that I’ve ever had was on Tumblr. Thank you, Tumblr, whoever made this, I don’t know, because there’s no link to it, or to whoever created it. 

But it talks about pain as, “How distracting is your pain, and how much can you do?” So, of 10 would be, “I can’t get out of bed. My pain is all that I can think about. I need extreme intervention and probably head to the ER,” and then you keep going down from there. So, like a 4 or 5 might be like, “I’m pretty uncomfortable. I can do some of my work. I probably couldn’t run errands, but I could sit quietly at home and watch TV, read a book, type on my computer. It’s distracting, but I can manage,” whereas 6, 7, it’s like, “I’m really — I’m getting I’m struggling to do things. I really need to go get my medication. Oh boy, it’s taking over what I can do. I probably need to start delegating tasks or start doing something else.” Where it’s just your ability to function and it gets rid of this like ‘pain tolerance’ and ‘pain thresholds’ that I feel like people use incorrectly as a way to like, “Oh, I have a high pain tolerance,” and I’m like, “Okay, let’s get rid of that. If you broke an arm, what can you do?” Because it ends up leading people to be like, “Well, I’ve had all these things happen and I wouldn’t give those a 9,” but for me, this is a 9 because I can’t stand this. Like to me, a broken arm might be a 6, it doesn’t hurt that bad and I know it will go away. This could take hours, I know how long this can go. And just yes, better descriptors, better scales, and work with patients to build these two. 

1:10:38 Cheryl: Oh, you’re really describing how I was trained as an occupational therapist. It’s like, you know, “What does the client, the patient, want to do in their life? And how has their condition taken away from that?” And then, how can you either compensate or have adaptive like tools, or like you mentioned, taking forced rest breaks and stuff like that for fatigue, or how can we remediate it? And those are the two options, either you make it better or you learn how to work around it.

1:11:07 Kim:  Yes, yes, that’s all you can do.

1:11:09 Cheryl: It’s kind of like simple, I mean, but then you have the grey area where you’re like, “Well, I don’t know how much better I can make this. Yesterday, I tried the Tylenol and it worked. But today I tried it and it didn’t.” So, it’s hard, but I appreciate that. I think that’s so helpful. I might try to find that. I have an old Tumblr.

1:11:26 Kim:  Yeah, I can send it to you if not, because I have it saved, and I print it out and I take it with me to appointments. I’m like, “This is the pain scale I use and I refer to.” 

1:11:35 Cheryl: That’s so good. 

1:11:35 Kim: And I did have a doctor — back to the gaslighting — I had a doctor, a pain doctor, recently say, “You have a job, your pain can’t be that bad.” And I was like, that’s not how my pain works. The extreme pain is intermittent. I have to go home when I have that. Or you’re just saying that I work so I’m fine. You have not seen how dirty my apartment is, the fact that I don’t see my friends, I can’t go home, I can’t take trips, I can’t run errands. I give all of my energy to work because, you know, I need that to keep my health insurance, to have a job, and because I care about the work that I do, but that’s where it all goes. And that yes, that one thing is not a statement of success. You know, “She has a job so she’s fine.” No. 

1:12:21 Cheryl: Oh, my gosh, totally. You’re getting punished for —

1:12:25 Kim: Yes! For functioning. 

1:12:27 Cheryl: For functioning. That is so wrong. And I remember, I had actually forgotten this, but I had a similar-ish situation that I only found out when I was looking through old e-mails trying to find something else, that when I was having some stomach issues but I didn’t recognize that it was gastroparesis coming back. I thought that I had already — I thought I had fixed my gastroparesis, but anyway, so it was my first time realizing it could be intermittent. I thought it was kind of like either you — you know what I mean? It’s there or not. 

But anyway, I said in my e-mail to my mom at the time — I was living a distance away — I’m like, “Well, the doctor says since I’m not taking any—”, this makes no sense at all to me now but anyway, my stomach was really hurting and they said, “Well, it’s because I haven’t taken any pain meds so it must not be that bad.” That’s like literally what the doctor said. 

1:13:15 Kim:  He was so dismissive. 

1:13:17 Cheryl: Who takes pain medication for a stomach — sorry, not to dismiss anyone who does, but I’ve never in my life taken like a Tylenol for a stomach ache. To me, that’s for other aches and pains. 

1:13:28 Kim: Yeah. If you do that, they’ll make like — because I do not take painkillers for my general body aches. I let it go. I say, excuse me, I save those for when the pain is so severe or when the body aches, I just can’t stand them and I am nearly in tears because it’s just so overwhelming. Yeah, but again too, if you put people into a comfortable environment. 

So, let’s think of like a work office versus a home office. A work office, you might not be in the most comfortable chair, you’re probably at a hard table. You have no control over the air, you have no control over smells, maybe don’t have a door, maybe it’s loud or too quiet. And you cannot adjust your body to be comfortable or to take rest breaks. But like compared to a work from home situation, I’m sitting on a Sherpa blanket, I can have my heat pad plugged in on me all times. If I need food, I can step over and just grab something really quick. I can, if I need a break, I can go sit on my couch for 20 minutes and get comfortable. I can control the clothing I’m wearing, can be soft and comfortable. I hope we will come as a workforce society to get better at allowing people to have bodies and to take care of those bodies.

 Because I too, like with clothing, I have realized for my RA that I don’t think I can ever go back to wearing something like jeans, or like pants with a zip-up in a non-elastic. I wear all loose, loose, loose clothing because I was putting on clothing from high school when I was home, and I was like, how did I ever wear this? This hurts so bad. I guess, allowing that — I think we can bring these classist ideas of professionalism and what looks and is professional down, and let people be more comfortable. Because more comfort can be more productive in all ways.

1:15:22 Cheryl: That’s what I’m hoping that the pandemic has brought to workplaces. But we’ll see. 

1:15:26 Kim:  I think it’ll be a battle for a while, touch and go.

1:15:29 Cheryl: It seems to be so far. 

1:15:30 Kim:  Following who does what, and kind of looking like, “All right Google, what are you doing? Okay, what are you doing? What are you doing?” 

1:15:37 Cheryl: Right, right.

1:15:38 Kim: People are just take the lead.

1:15:40 Cheryl: Yeah. I could talk to you forever. And so, I think we’ll have to do like a follow-up. But thank you so much again, especially, I mean, given how much you’ve been going through I know really recently. I’m so glad that you are having, you know, a relative good day. 

1:15:57 Kim:  This is a good day. This is a good day.

1:15:59 Cheryl: Yeah. Yeah. 

1:16:00 Kim: With RA, who knows? 

1:16:01 Cheryl: Yeah, yeah. Learning how to live with that uncertainty has just been so difficult, but important. 

1:16:08 Kim:  Yeah. It’s exhausting. It’s exhausting. 

1:16:10 Cheryl: Yeah, but I’m so glad you spent your spoons on this podcast. 

1:16:14 Kim:  Yes, I sure did. And to me, too.

1:16:18 Cheryl: And I’ll put your, whatever contact information you’d like for people to have if you want.

1:16:22 Kim:  Yeah, I would love, I would love to hear from people. I am not always the best at responding right now because it is sometimes overwhelming to write back about medical things. But I still want people to reach out to me because I want to find others like me, and I’m happy also to make more individual connections. Because, you know, I post on Reddit, but no one knows who it is and I would love to know other people and that I can also be your friend because oh, I get it. I get it.

1:16:48 Cheryl: Oh, thank you. So, I’ll put all your links in the show notes. 

1:16:51 Kim: Yes, great.

1:16:52 Cheryl: Thank you so much!

1:16:54 Kim:  Yes. All right. Have a great evening.

[Ending music]

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.