Summary:
It’s common to feel like your condition is your fault. In this episode, Marion shares how she learned to avoid self-blame while living with rheumatoid arthritis.
Video of episode:
Episode at a glance:
- Marion’s Diagnosis Story
- Marion’s Treatment Journey: changes in medications over 15 years,
- Working while Living with Rheumatoid Arthritis: from struggling in silence to disclosing and getting support
- How Marion went from feeling guilty and afraid she’d be seen as “lazy” to realizing her condition wasn’t her fault
- Values: How RA led Marion to “crystallize her values” and redefine what success means to her, and to become more assertive
- The role of online support communities in Marion’s coping and acceptance
- Rapid fire “lightning round” questions
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.
Episode Sponsors
Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Marion: I was diagnosed over 20 years ago. It’s been a journey to accept my RA and learn to advocate for myself. There were so many things I wish I would have known when I was first diagnosed. I hope sharing my story can help others.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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 links:
- Links to things mentioned in episode or additional listening
- Marion’s Links
- https://www.facebook.com/marion.liszkowski/
- @ Invisibly_disabled_marysd
- https://www.linkedin.com/in/mliszkowski,
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
Yay! I’m happy to have Marian today on the Arthritis Life podcast. Welcome!
Marion:
Hi. Nice to be here.
Cheryl:
Yeah. And if you don’t mind, just letting the audience know, you know, where do you live? And what is your relationship to arthritis?
Marion:
Well, I live in San Diego, California. And I’ve had arthritis for a little over 20 years. And it’s been an up and down roller coaster for me. I’ve had a lot of ups, a lot of good things that I’ve learned about myself and about life. And there have been several challenges, so yeah.
Cheryl:
Yeah. I love that analogy of a roller coaster. I mean, it really is for almost everyone at some point, it becomes a roller coaster. So, I would love to hear, since you’ve had it for 20 years, whatever you can remember about your initial diagnosis, you know, was it easy to get a diagnosis? Was it hard? What was that like?
Marion:
Well, you know, I was thinking about this before I came on here. And normally, when I talk to people about how I was originally diagnosed, my mind goes back to the first time I met my rheumatologist. But I really, um, diagnosis came about on a routine check with a new doctor, new health insurance. And she asked me a bunch of questions.
And I started to say, “You know, my hands feel kind of like I have rubber bands in them in the morning, and they’re really tight. And like, somebody needs to come and loosen them. And then eventually, they loosen.” And she asked me a bunch of other questions about my history, my family history, and I said, “Oh, well, yeah, my grandma had rheumatoid arthritis. And she was really bad. My mom had it shortly before she died, but it never, you know, developed into a big thing.” And it was just a casual conversation. And she said, “I want to take a blood test. And I think you might have RA,” and I said, “Okay, whatever.” And she took the blood test, and it came back a week or so later that I had RA. And I was able to get, she was able to get me in to see a specialist within about a month. Between that time, it went from my fingers feeling tight, to my hands swelling up in the morning, and my feet and ankles starting to swell.
Cheryl:
Oh, wow.
Marion:
And so, when I saw my rheumatologist, she was very positive. And she said, “We’ve caught this early. This is good. We’ve got a lot of new medications we can try. And, you know, if you were going to be diagnosed with rheumatoid arthritis right now, your body kind of picked the best time because now we have so many more choices and options.” And honestly, her positivity helps me feel better. But I also had that nagging thought of my memory of my grandmother in a wheelchair not being able to walk or use her hands very well. It was slow going in the beginning. I really, I was really — I had a hard time. I wanted to be the best patient I could be. So, I always put a positive spin on things until several months into meeting with my doctor. She said, “Okay, you need to tell me everything that’s going on.”
Cheryl:
Oh, my gosh. I’ve had that same conversation. Exactly. Sometimes it doesn’t help you to be an optimist. Like, I would tell my doctor after my son was born, “Oh, I think it’s like about to get better. It’s about to get better.” She’s like, “But how is it now?” You know, she didn’t really call me out on that. But it’s hard, right? Because if you admit how bad it is, it’s kind of scary.
Marion:
It’s terrifying, right? And I, at that moment, in the beginning of, I don’t, like — I say my disease, but I don’t like to say ‘mine’ because it’s almost like, it’s not. It’s not my responsibility. But in the beginning, I took such responsibility. So, I must have done something wrong. I must have exercised too much or too little. Slept too much. Had too much stress in my life. Ate the wrong things. I must have done something to get this, right? And it took me years to figure out that it has nothing to do with the person I am. It’s a sucky disease. And yes, there are things that I can make it better, that I can do to make it easier for me, but it’s so random. It’s ridiculous. But I was trying to be the best patient I could be right. So, I was telling my doctor the best parts. And, “Yeah, it’s getting a little better. It’s getting a lot — you know, I don’t feel this in the morning as much.” And then one day I came in and I said, “Yeah, I can deal with this. But when I go home from work, I’ve walked the dog briefly. And then I’m on the couch for the rest of the evening.” And she said, “I need to hear that stuff. I need to hear what you can’t do. I need to hear, you know, how bad your pain is.” So, that’s when it started to click in and I was very lucky she said that close to the beginning, that it started to click in that I had to be a collaborator, right. And gradually, I learned questions to ask, like, “Is this medication — how long is it going to take before I know it works or not?” That was a big one for me to learn, right. Because I was first put on methotrexate alone. And that lasted about six months before she added, my doctor added Leflunomide. And that took three months before that kicked in. And when that kicked in, together that combination worked for me for about 15 years.
Cheryl:
Oh, wow.
Marion:
Yeah. And I remember the day I woke up, and I thought, “I kind of feel like myself, almost.” This was — and it was crazy. But I did — but the other thing that I struggled with throughout the 20 plus years has been ‘I feel good. How much can I push myself?’ And trying to feel like I’m not responsible. And I’m not. I’m not responsible for my disease. And I’m trying the best I can. And I’m not lazy if I’m tired. And I think I was able pretty easily, pretty quickly to learn how to talk to people in my life, in my personal relationships, and my family. But when I got rheumatoid arthritis, I had just moved to San Diego from Ohio. And this was my big move I was going to make. I was going to change my life. It was my big adventure. And one thing my dad said to me at the beginning, when I when I told him, he said, “Come home so we can take care of you.” And that clicked in my head and I was like, hell no, this arthritis is not going to change my dream, my adventure, right? So, I did everything I could to keep on that adventure. And one of the things I did was I really changed my identity and what I said in my job.
Cheryl:
What was your job? Sorry, what was your job?
Marion:
At first, I was a leasing consultant at an apartment community. And that was kind of — being a leasing consultant, I equate it to like, it’s a fallback job. So, you know, like people who are waiters or waitresses, you know, when you’re in between jobs, you’re looking for something, you kind of take a waitressing job to pay the bills, and that was my, my job to pay the bills. And so, I stayed there for about a year and a half, two years, and then I moved on to be a membership development coordinator. So, I recruited volunteers and trained them for a big non-profit in San Diego here in Nashville. So, in my head, I equated being independent and being able to stay in San Diego with having good health insurance.
Cheryl:
Mm-hmm.
Marion:
So, I did everything I could to keep a job and keep that health insurance because it was terrifying to me if, you know, I was to lose my health insurance.
Cheryl:
Yeah, yeah.
Marion:
So, being employed with RA, it worked really well. The medications worked really well, but it also made me open to getting sick. Catching colds, catching viruses. Sinus infections and bronchitis were the thing that hit me the most. And in the field that I worked in, especially in the second job, for the non-profit, it was encouraged — and I think this is a, this is an American type of ideal, or an idea — but it was encouraged to push yourself as much as you could in your job.
Cheryl:
Mm-hmm.
Marion:
So, you know, they would talk about — excuse me, I gotta get some water here.
Cheryl:
Oh, yeah, go for it.
Marion:
They talked about work life balance, right. But the people who were coming in early and staying later, or working extra hours, were always the ones that were pointed out in meetings and by supervisors, right. I was told — it was very interesting — I was told, “You take, you seem to take all of this sick time once you’ve accrued it.” And I’m like, yeah, I do. And in my brain, I was like, and the point is why? Why are you — why is it a bad thing?
Cheryl:
It’s almost like that’s what it’s there for.
Marion:
That’s what I thought, right? And I knew I was taking it so that I could perform the best I could in my job. But I wasn’t about to say that. So, I just would, would learn to say, “Oh, I’m so sorry. Yeah, I’ve been, I’ve been sick lately. Yeah. Yeah, I just didn’t, I didn’t want to get anybody else sick.” So, I had to learn to kind of change my personality at work, hold my tongue a lot. I’m much more vocal than I was at work. And really, there were so many things that I could have responded to, and I had to let go, because I was afraid that I would be outed. So, it was really frustrating. It was really frustrating.
Cheryl:
You didn’t talk to any of your co-workers about the fact that you had this diagnosis?
Marion:
Not for a few years.
Cheryl:
Okay. Yeah.
Marion:
And I was at this particular job for about six years. I didn’t say anything for a few years. And I didn’t get a whole lot of support once I did, because I saw all my co-workers running around like crazy pushing themselves. And so, when I did say, “Well, this is why I take — I go home early, or, you know, I take a break. Or this is why I come in at the, you know, at the last as late as I can. Because this really affects me.” And there were a couple of people, supervisors and co-workers, who said, “Well, why don’t you take naps?” And I’m like, arthritis fatigue cannot be cured by a nap. And it’s so difficult to explain it to somebody. Once I did tell my supervisor a few years into it, she told me things like, you know, “Well, use your use your weekends to rest up.” While everybody else is enjoying their weekend and having fun, it’s perfectly fine for her, in her mind, that I’m on the couch for 48 hours trying to rest up for Monday. It was just, yeah, it was really hard. It was really hard.
And my doctor had suggested that I go to some support groups. And back then, that was before there were apps and online communities and things like that. So, it was an in-person thing. And I went to several, but they seemed to stress me out even more, because there was a gamut of some are doing really well and some are really struggling. And in my head, I’m like, is that going to happen to me? You know, is the worst might happen to me? And I went to several until one day this woman walked into the into the room, and she was an older woman. And she seemed fine. She was very bright. She had like, a bright look on her face. She was a positive person. And the only thing that was noticeable was that she walked with a cane.
Cheryl:
Mm-hmm.
Marion:
But I mean, easily walk with a cane. She was pretty mobile. And she sat down next to me and I was pretty quiet during the meeting. And after the meeting, she talked to me and she asked me, you know, what was my age and how long I had had RA. And she looked at me and she said, “You know, I got RA at your age. And they put me on this medication,” I think she said she had been on methotrexate the entire time. And she said, “And eventually, I got to where I needed to be. I was okay.” And she said, “You don’t be afraid to take the medication that your doctor prescribes. Ask all the questions you need. And talk to your doctor as much as you can, with any questions. Don’t be afraid to talk to your doctors. But you’re going to be okay.” And that was the first time in years that I heard that from somebody outside of my doctor’s office.
Cheryl:
Wow.
Marion:
Yeah. Yeah.
Cheryl:
That’s huge. That’s huge. I know. And I’ve heard that, you know, because I obviously run, you know, a Rheum to THRIVE like support group and education program. And people will say, “Oh, I’m worried if I join a group, I’m just gonna get depressed hearing the stories,” and, you know, it’s hard to predict in advance, right, what the tone and the vibe of the group is going to be. But I do think that different support groups are just structured differently. And if it is like a free for all, it can become just an unproductive kind of venting session. Whereas I think I do try to structure things, I try to be really conscientious about giving time for all sides of the disease. There’s time to, for us to celebrate the wins. And like, yes, I got a second opinion and this good thing happened or, you know, something unrelated like, it was my kid’s birthday, and, you know, and then we also do spend time venting and realize that there are going to be some people who have more severe uncontrolled disease and more upsetting things happening. And there’ll be other people who will be having more mild disease. But we all deserve support. And we all deserve a community, so.
Marion:
And that’s why I found your group so helpful, because it was well facilitated. And it was, it felt safe. I felt safe going there. And I think, to be honest, because it’s online, if it became too overwhelming, I could kind of zone out without offending anybody, right. I could just kind of turn my camera off and kind of close my eyes and say, “Okay, I need to — I need to step away from this part of the conversation, because that’s triggering me,” right?
Cheryl:
That is such a good point. That’s, yeah, like especially, there are certain days, like, I can’t — I cannot even hear the word ‘COVID’ right now, like, I don’t want to think about COVID, you know, or vaccines, or just overwhelmed. And, yeah, and in-person groups, there’s not that ease of being able to kind of gracefully or — what’s the word — politely, yeah, yeah. Such a good point. Sorry, I got you off track. So, we were talking about you had your job. And I do think — I worked at non-profits. Yeah, it can be really hard. There’s a lot of pressure because everyone’s there, partly, I’m sure, for the mission, right. And they believe in the work and want to do a good job. But, you know, it doesn’t — it’s not very, it’s not good practice to encourage employees, whether they have chronic illness or not, to sacrifice their own sleep and their own lives. Because the fact is that a non-profit, there’s always more work to be done. You could work yourself into the ground, and still, there’s more to be done. So, that can be a difficult job setting for people with chronic illness, I would say.
Marion:
Yeah, yeah.
Cheryl:
Depending on how its structured. I’m sure there are some out there that are very, you know, I do know some people who work for non-profits, I should say. I don’t want to give an unbalanced view. But yeah, any company can be, you know, treat its employees well or not. But then, so where did you end up working after that?
Marion:
After that, I went to another non-profit. And yeah, you’re completely right. My experience was very different there. I still had some kind of — how do I want to say this — some uneducated comments or ideas. I was in a better place so I could let that kind of roll off of me or respond to it, if I wanted to. I was lucky in that the HR person, the HR director and I became friends. And she was very, very supportive and knowledgeable. And they were — I would go to her sometimes and I would say, “You know, if someone says ‘Blah, blah, blah,’ you know,” and she’s like, “Yeah, they legally can’t say that to you,” or things that I didn’t think about such as when you call in sick, you should not have to give a reason.
Cheryl:
Right, right. Yes.
Marion:
And in the state of California, and then I think there are five other states that do short-term disability leave where you are guaranteed your position when you come back, right, if you do that, and I have had to take that twice in my career. The first time I took it was in the other non-profit that was a little more difficult to work with. And I was told I needed to be off for a month, and I was put on prednisone and all that kind of stuff. Well, after a couple of weeks of resting and thinking, okay, my mission right now — because that’s what my doctor told me which I love her for this — she said, “In these in these weeks, your mission is to heal, help your body heal. So, that means rest and take care of yourself,” right. And after a couple of weeks, I woke up thinking, “Oh, this feels good. I feel good. I haven’t felt this way in years. I feel good. I wanna keep feeling like this.” So, that was, I think, six months after I went back to that job, I gave notice. And that was a learning experience. And then the second time, I had had a difficult time for a couple of years. And I needed some time off with the other job. And I and it was a much different experience. But yeah, yeah. So, that was a godsend for me.
Cheryl:
Yeah, it really is. It’s so interesting. You don’t know how stressed out you’ve been until you have a break from it. And then you realize, whoa, how was I even functioning on that level of stress every day? Like yeah, so, I mean, it’s good that you took that leave. And I want to follow up on something you mentioned earlier about, you know, feeling like sometimes the other people, there’s an impression sometimes that other people can give us whether it’s friends, family, coworkers, that it’s our fault. That your condition is your fault. And before we chatted today, you shared that you have had other people in your life kind of blame you for your condition. And would you mind sharing a little more about that and what you’ve done to cope in those situations?
Marion:
Okay. Well, in the beginning, I’ve had, you know, I say maybe after I told my first boss, I was two years, two or three years after I was diagnosed. She said, “Well, you’ll feel better if you sleep more. And why don’t you try and go to sleep earlier? Why don’t you do this? Why don’t you do that? Why don’t you take naps?” you know. What else? Oh, and she said, because her job consisted of, you know, we had to be in the office for so many hours and we had meetings in the evening sometimes. And then, they expected us to be in the office at 9am after a night meeting. And I had mentioned, you know, this isn’t really helpful, helpful. This isn’t really — it doesn’t help me be more productive, and it doesn’t help me do my job better. And she basically said, “Well, our department looks bad if you’re not in the office at 9am.” And I said, “But the other department’s not out of the office and working at 9pm the night before”,“Well, it just looks bad.” Yeah. And so, in the beginning, I took it personally. I took it personally. I was like, I would go home and think, oh, my God, I just, okay, maybe if I, on the weekends, if I just try and go to sleep earlier, or if I eat this, or if I don’t do this, or if I don’t do that, you know. I was just a wreck because I just felt so guilty all the time. As my self-esteem came back, and I was supported by my family and my dad at home, and I met this really good guy who was supportive and when I told him what I had, he immediately went online trying to figure out ideas and information, and yeah.
Cheryl:
That’s sweet.
Marion:
That was so sweet. So, I had some of that. I had that validation at home when I stepped out of the office. So, that kind of boosted me after, you know. And after I felt better, you know. Once when you’re feeling more like yourself and you don’t have as much pain, your brain switches on and your self-esteem goes up. So, I would basically challenge her sometimes. And I think that was an issue for her. I think I really annoyed her sometimes. Because she would say, you know, “You’ve got to go and you got to get this. You’ve got to get those new volunteers. You’ve got to go and get this and work and do your best.” And I said, “I don’t agree if I don’t have a good life balance, I can’t do that. I can’t do what you’re asking if I don’t feel good.” And she really had a quizzical look like, what do you mean? You’re supposed to rest when you don’t feel well?
Cheryl:
Well, and I think so it’s interesting, because we have two kind of different overlapping categories, right? There’s the category of like implicit or explicit blame, where other people blame us for our condition. And then there’s unsolicited advice. And they can overlap, right? Because unsolicited advice can be things that are implying that if you just X, or Y, or Z, you would feel better. And I think sometimes — this is just my thoughts, two cents on it — but context is everything, right? Because if someone who I know loves me and has my best interests at heart is like, “Hey, like, you know, I was just reading about how like little mini naps throughout the day, like little rest breaks can really help people with autoimmune fatigue. Have you tried that?” like, in a way of like, I love you, and I know you’re struggling, like this might help. As opposed to the way the delivery, it sounds like, when your boss felt more kind of like you’re a problem. Like, your disease is a problem for me. I’m ‘helping’, quote-unquote, you by telling you, like, just try these things so that you can not be a problem for me anymore. And it could have, who knows?
I mean, maybe your boss did genuinely care about you as well and wanted you to, you know, experience some relief. A lot of times unsolicited advice comes from a good place. But it can feel really frustrating when you’re still getting to know yourself your condition. And then because — I don’t know about you, but I actually my default is to always assume everyone else is right. Like, it’s really weird. I’m like, oh, my gosh, maybe they’re right. Like, maybe it is my fault. Maybe I just need to take more naps. And then you do the thing. And nobody wants to hear the feedback that I tried what you suggested, and it didn’t work. Like, for me, it’s like the diet changes. I’m like, I’m sorry. Like, I’m aware of the evidence of dietary changes helping rheumatoid arthritis. It just literally did not happen with me. And so, I can’t. I’m sad too, but like, it’s not my fault that it didn’t work. Like, someone else could eat the foods that I tried and have an amazing response. I didn’t. And so, anyway, I’m sorry.
Marion:
Just, you know, I’ve had friends too, and the friends at that particular job because we were pushed to work, work, work so hard. And I was saying, “I’m going to take time off, I’m going to take a nap,” or, “I’m going to — I’m going to call in sick because I don’t feel well.” They were still having to push, push, push. And so, it was hard for them to understand or to empathize, you know. And I would, I started to say, this isn’t healthy for anyone. You know, I would tell them, you know, this pace is not healthy for a healthy person. And I think it was just hard for somebody to hear because in our society, if you’re — you know, I worked with a single mom with three kids, and, you know, or somebody, or a woman who was the main breadwinner. So, you can’t just say, “I’m gonna quit my job,” and, you know, and this was before, you know, Obamacare or UCA, so you can’t give up your health insurance. You don’t want to.
Cheryl:
I was diagnosed at the same time as you, almost 19 years for me, but yeah, that was huge. And it’s funny because I also worked at a non-profit and it was wonderful, but regardless of what you’re working, if you know that your employment is tied to your health insurance it is hard to advocate for yourself because you’re feel like you’re in the losing negotiation position, right. Though the winning position is the one that has the power, you know, that’s the person who’s paying your, you know, salary and insurance. So, yeah. Yeah, that’s so tricky.
Marion:
Yeah. So, after about 15 years, the methotrexate stopped working, or it started working too much to where I was getting these strange side effects, and I had to be taken off of it. And I was on the Leflunomide for about six months alone. And then things started to go out of whack. So, I’d say, so seven years ago, things went out of whack for about two years. And it was trying one medication. So, I forgot what we tried to tried. Tried Humira first. And that worked wonderfully for a few months, and then it tapered off and didn’t work. And then there was Orencia. And same thing, worked great, and then it tapered off. And then I did Enbrel. And that was that worked so well in the beginning, I thought — I was like, are you sure?
Cheryl:
Is this real life?
Marion:
Yeah, I had so much energy I had to take like 45-minute walks twice a day, in addition to doing everything else. And I thought this is great, but this is really weird. And then it stopped working all together.
Cheryl:
Me too. Yeah, it’s really weird that your body develops — I mean, my understanding is that when it stops working, your body develops antibodies sometimes to the medication, just like it’s developing auto antibodies against your own tissue. Yeah.
Marion:
Yeah. So, I was put on Xeljanz. And that slowly started to work. And it really, it was slow. I’d say six months. And I thought, okay, I’m feeling the effects. Now it’s started. And it literally took, I think, a year, you know, for it to, for everything to kick in. The interesting thing about Xeljanz — and I told my doctor several times, she didn’t believe me — and I said, my hair keeps growing and it won’t stop growing. And she’s like —
Cheryl:
Is it everywhere, or just on your head?
Marion:
On my head.
Cheryl:
Because that would be funny if your arm hair started just like — sorry.
Marion:
My hair, if you could see, it’s a little bit above shoulder length. And that’s kind of the normal for me, that used to be how long it would grow before it started to look bad, right. My hair just wouldn’t stop growing. And it took like, I’d say, three or four visits before she said, “I’m gonna report this. Because, yeah, I don’t, I’m not sure.” And I’ve heard after that, that they had started — for some people, it does that. And they had started doing research on what they could use it for other for other conditions.
Cheryl:
That’s so interesting. Yeah, maybe people who are having hard time with hair gain or hair loss, like men or something?
Marion:
Yeah. Yeah.
Cheryl:
Interesting. That’s such a good reminder, you know, if you’re experiencing something that you think is rare, still tell your doctor — or that you weren’t prepared for — tell your doctor because they may be able to report it to the pharmacy boards and all that stuff. And it might be, you know, you might be the first person that’s kind of helping identify a side effect. Yeah. Anyway, sorry. Are you still on Xeljanz currently?
Marion:
I still am. Xeljanz and Leflunomide together, and it works fine. Yeah.
Cheryl:
And that’s really — and I love that, that you said earlier about asking how long the medication should take because it is different for each medication and how long it might take to be effective.
Marion:
Yeah. I think one thing that I am grateful for, throughout this whole journey is that when my doctor said, “We’re going to try this, and here are the side effects. And are you ready to start?” I would say, I would think about it. I would do my research if there were some major things that I wasn’t sure about. But I would I would take medication, and I would not avoid medication. Because what I’ve learned after, you know, having a bout of two years of it not working for me is that when you don’t take the medication, you can be losing out on time, because RA is progressive. So, you might not see things that are happening to your body. But you may be having joint erosion and it could affect your organs as well. So, when I have a friend or someone I talk to about RA, or another autoimmune disorder, you know, and there’s no ‘I’m going to try going medication-free’. I say, you know, talk to your doctor and do, you know, read some stuff. Because it can be worse than taking medication.
Cheryl:
Yeah, I feel like I’m constantly harping on that. But yeah, and it’s not, as a lot of people say, “Well, so and so is able to manage it naturally,” and it’s not a matter of — it’s not that nobody can. It’s that it’s very rare, and that the medications simply, at the population level have the best evidence of effectiveness and they’re well-tolerated a lot of people. A lot of people get really, really tied into and freaked out by the side effect profile. And you have to remember, just because there’s a potential side effect doesn’t mean that your body’s going to experience it. I’ve been on methotrexate for 19 years except for my pregnancy and conception and everything and I don’t have nausea or fatigue from methotrexate that I can tell. Like, I mean, it’s possible because I do have fatigue, but don’t think it’s from the methotrexate, it’s from the disease. But, you know, it’s like, you don’t know until you try. And you’re so right. It’s this is not just about how much pain you can handle like joint pain, it’s about systemic inflammation that affects the lungs and the heart and leads to uncontrolled rheumatoid arthritis is associated with a seven-year reduction in life expectancy. If you can control that, if you’re one of the like, the 5% of people that can control it with diet alone, or exercise and lifestyle alone, that’s awesome. Do that. And if you’re not, if you’re in the majority, that’s okay, too. There’s no shame anyway. So, yeah, that’s my soapbox.
Marion:
Yeah. Yeah. But getting back to, you know, how I deal with people, and yeah, how people’s opinions and how people’s words affect me. I did a master’s program a few years ago. I think we started, yeah, we started in 2019. And I found myself angry, because it was a program in counselling for students. So, it’s like a school counsellor kind of position, program. And they had a very strong influence of social constructionism. And social constructionism is how we perceive things, how we say things, how we identify with things, right. And I found myself in the beginning in the orientation saying, “I’m really pissed off that’s what society thinks of as success and who we say is successful. And I have an autoimmune disorder, and I can’t do a lot of those things that people see as successful. And people label me lazy or incompetent, or, you know, just not not wanting to be successful, and it’s really pissing me off.” And, you know, I started talking about what do we think is successful?
Well, what I see on television, or what I see in the world is, you get up at 4:30 in the morning, you jump on your bike, and you work yourself, you do a workout that’s going to almost kill you. Because that’s what’s important. You get your kids, get your kids up, and get them dressed, you take them to school. And then you go to your job early, and you work, work, work until it’s time to leave, and then you go home, and you do it all over again. And if you do that, you’re gonna have a really nice house and a really nice car, and you’re gonna look really great, and you’re going to have all of these things. And that’s success, and that’s happiness. And I thought, you know, that’s not for me anymore. It’s just not. And it really — this arthritis, rheumatoid arthritis, forced me to change my values or forced me to crystallize my values. These were always my values, right. I always thought that success wasn’t attached to money or a job. It was attached to how I was as a person and what kind of people I surrounded myself with. It was able to get out into nature, you know, those kinds of things. Who I connected with. It was about connection for me.
And I, for our capstone project in one of my classes, we had to do a media research or media study. And we were to pick an oppressed group that we either identified with or we had empathy for. And so, I picked people with invisible disabilities. And so, yay! Yes. So, I picked people with invisible disabilities and I studied movies, and I studied — I think it’s Renoir.
Cheryl:
Yeah, he had rheumatoid arthritis.
Marion:
He had RA. And I studied commercials. And as I was writing this, I was, you know, this is how people with invisible disabilities, this is what they have to deal with. And in the middle of the paper, I literally wrote in the paper, “I just realized this is my group. I’m part of this group.” That just like, clicked. And my professor was so excited. But the way that, for good example, one of the medications on television — I’m not going to name it, because they all kind of say this — but so, you take this pill, or you take this shot, and you go from being in pain and missing out on life, and everything is dark, I think even one, the whole atmosphere was dark. And then you take that pill and everything is great. And you’re happy, and you can move, and you feel great. And some of it is true, but it’s not that simple.
Cheryl:
Mm-hmm. Mm-hmm.
Marion:
And —
Cheryl:
Well, and I feel so mixed about that sometimes, because it’s like, on the one hand, we were just saying how the medications can be so transformative. But you’re right, because those videos imply that if your disease doesn’t get better, your life sucks. And that can’t be true, either, right? Because that means that then people with disabilities can’t have a full vibrant, beautiful life. And we know that that’s not true.
Marion:
Right. And I see that as people without autoimmune disorder. That’s their interpretation.
Cheryl:
Yes.
Marion:
That’s how they think the medication should be doing. I would really like to see more people involved with, who have autoimmune disorders, you know, make movies and talk about what it’s like, and show people what it’s really like. And it’s not all awful. It’s very good. I’ve really changed the way I think about things and the way I have much less guilt.
Cheryl:
Yeah. So, okay, I love that. I love that. Yeah. And so, what do you think — like, it sounds like if I could paint the before and after for you, not in a reductive way, but you said earlier that in your first job when you were first getting used to your diagnosis, you did feel guilty when your boss was like, “You shouldn’t — can you just take a nap? Or can you just —” aka ‘You should be taking care of yourself better’, and you felt guilty. And I would have too, you know. And now you don’t. What helped you get from A to B? Like, was it experiencing these random flare-ups and knowing that it’s not always your fault, or like you can do the right thing, do everything perfect, and sometimes a flare-up just comes? Or what else kind of helped?
Marion:
Having healthy relationships outside of work. And learning. I think I was really lucky with my doctor, because she really was open and wanted a collaborative relationship. And she was with me challenging her and saying, “I don’t like that. I don’t — no, I don’t want to hear that. What about this, or what —?” you know, she was really helpful about that. And I think it was a growth. It was growth throughout that. But I learned and I don’t know, I think it was partly survival instinct. But I would learn to tune out the people who were still in that mode of making me feel guilty. After I left that job that was really negative for me. I stayed in touch with a few people and everything there stayed the same, right. So, it wasn’t me. It was the environment. And just I learned to kind of speak my mind, speak my truth, and whatever was going to happen, happened. But I think having, you know, pulling people who are positive and helpful and supportive, pulling them closer. And keeping the negative people at a certain distance, like, you know what, you can have that opinion. That’s fine. But you’re not getting into my head anyway. Because what good was that doing me? That’s not helping my disease. It’s not helping me be more successful. It’s not helping me in my career. So, where was it helpful? Nowhere. I think that helped. And I think, therapy.
Cheryl:
Yes!
Marion:
Yeah. But therapy, oh, my God. Yeah, I started therapy like halfway in, I’d say. And then I came to my current therapist. It’s, I want to say six, seven years ago. And she’s been amazing. She’s been really amazing. But, you know.
Cheryl:
That’s so good. I feel the same. I resisted therapy for a long time because I thought, I have so much support, you know, like, who am I to need therapy? I have an amazing family, amazing partner, friends. And you it’s funny, I was just talking to Jan for the podcast. And she, and another patient, she mentioned, you know, her doctor told her, “Doesn’t matter how much family and friends and loved ones support you had, you need a neutral third party.” And I was like, oh, I wish someone had said that to me earlier. Because I felt like I didn’t justify therapy in my head. Because again, I was like, I have so much support. Like, I don’t, my life isn’t, quote-unquote‘that bad’, you know, other people need therapy more than me. But yeah, what do you think it is, for you, about therapy? Is it that safe space? Is it the neutral party to kind of reflect back to you what you’re going through? Or what do you think? It’s hard to put into words, I know.
Marion:
I think it’s — I think, number one, is the safe space. And number two, it’s the validation. So, I could tell, I could tell her things like, “So and so at work said this. Am I crazy to think that is really rude? Or am I —?” And she would, you know, validate me. You know, you’re going through a lot. And what’s — I don’t want to say what’s good — what was helpful is that she has an autoimmune disorder.
Cheryl:
Oh, no, that is helpful, yeah.
Marion:
Yeah. So, she’s coming from a place of empathy. And from, you know, she’s already gone through some of the things that I’ve gone through. So, yeah, it’s just that finding, what did she call it? She said, you’re finding your mojo again, right. I got there for myself, right.
Cheryl:
I love that. Yeah, that validation is so key. Like, I remember so vividly, my therapist changed offices at one point. And I remember it was at her old office where she was the first time. I just remember, it was so simple, I was explaining to her but I was also minimizing some of the stuff I had been through with my health, because I thought I was just there to talk about being a mom. And like, yeah, my health is kind of getting in the way of that, like, a rheumatoid arthritis postpartum flare up. But like, I was kind of kept shoving that, “It’s not that big of a deal. I’m fine. I’m fine.” And she’s like, that’s — she just told me she’s like, “That’s a lot. Like, what you’ve just described is a lot for someone to go through.” And I was like, “I know, I know.” She’s like, “No, that’s a lot.” Like, she had to get me to, like, hear her saying it. And I remember feeling so validated, because I’d be like, “Oh, I know it’s a lot. But like, I have such a great family, and such a great blah, blah,” and she’s like, “Yeah, but it’s a lot. It’s still a lot. You’ve been through a lot. And you’re currently going through a lot.”
And I was like, whoa. Like having, again, someone not related to me in any other way validating that, just it was very powerful. And I know right now, it can be hard during the pandemic — it’s 2022 we’re recording this — that, you know, there seems to sometimes be a shortage or some people just can’t access therapy, either due to like, cost or whatnot. But if you’re able to, you know, really and even if there’s — some people don’t know this, but sorry, there’s a little bit of a logistic side note, but if you if you find a therapist that is quote-unquote, like ‘private pay’ or ‘cash-based’, you can still ask them to give you a super bill which you can then submit to your insurance. That’s how my psychiatrist that I’ve gone to, he doesn’t network with insurance so he’s considered an out of network provider, but I still get the visits covered at like 70%. They’re just not as covered at like 80%, which is in network. So, it’s not that big of a difference, I just have to, I pay upfront, submit to my insurance, which is a two-page thing I upload, and then they literally, they give me the money, like 70% of the cost of the appointment. So, that’s something that a lot of people get overwhelmed with, like the payment part of it. But anyway, yeah, therapy is amazing.
Marion:
Yeah. And some therapists will do sliding scale, too.
Cheryl:
Great point. Great point. Yeah.
Marion:
You can just tell them and mine did. Mine, she actually changed her fees, once she knew that I had to quit my job. And we still wanted to keep on going.
Cheryl:
That’s really nice. And a lot of them do that. You’re so right. And I also wanted to ask, just, you know, on the topic, I guess, of things that help our mental health, you know, what are some — if you don’t mind — sharing some of the things that you got out of being part of the latest Rheum to THRIVE group of THRIVE-ers?
Marion:
So much. One of the things that, you know, you said, we were in class, and you said, you said it, and I was like, “Oh! I never thought of that” was just being able to accept the fact that this disease is so random. And again, that’s connected with my guilt part, right. So, it you could do everything right, right. You could do everything right. And then all of a sudden, bam, something changes. And that’s what happened to me several years ago, and I think it had to do with menopause. And so, my hormones shifted and everything. And then so the methotrexate and leflunomide weren’t working well. And then it was just everything went haywire for a while. But yeah, that’s the thing. It can be so random. The other thing, the journaling, and the keeping a pain journal. That’s so important, especially when you’re in the beginning of your diagnosis. That’s so important. Because, you know, I would take mine to my doctor, and she would look at it, and say, “Okay, so this is happening. Okay, so that’s happening.” I remember, I want to say for my fourth year with rheumatoid arthritis — my favorite holiday is Thanksgiving. And I can’t go home usually for Thanksgiving, because it’s just, it’s a big hassle. And it’s going to bad weather from good weather. And it just doesn’t didn’t work for me. So, I would cook Thanksgiving dinner and for my boyfriend and his son, and I would do all of the traditional things, all of the traditional foods. And for me, I was starting to learn that certain foods are triggers and would make me not feel well. And I was literally on the couch every Friday after Thanksgiving every year. And so, doing that journal helped me go, “Oh, what was I eating? What did I do? Oh, well, I cooked all day. And so, I pushed myself. And I was eating some kind of, some bad foods that I normally don’t eat. Bingo.” Okay. So, you know, after that, I gave my boyfriend, “Here, can you do that? Can you cook this? And can you do that?” every year, and I’m going to incorporate some other foods that are healthier for me. But just the journaling, just the keeping track and trying to keep track and just kind of finding your triggers, that really helped. Because it helped bring home the idea that there was something I could do and I could keep track of. And it also reminded me that everybody is different.
Cheryl:
Yes.
Marion:
Everybody reacts to things differently.
Cheryl:
And your own body might change over the years too.
Marion:
Yes.
Cheryl:
And that really felt like a — I felt — what’s the word? I want to say violated but that’s not the right word. When that first happened, I was like, “No, this is — you’re one of my safe things!” Or like, “No, I I can handle this,” and it’s like well, maybe not anymore and maybe in the past this didn’t bother your joints, you know, but now it does. Like for me, it’s the heat and the sunlight. I’ve become increasingly hypersensitive to those. I’ve looked back at pictures of myself and been like, I don’t remember feeling like completely horrible after that, you know. We did our honeymoon in Fiji and that didn’t — I don’t remember, I mean, I’ve always been good about not getting too much sun just because I’m really pale and I have skin cancer in my family but I have had — sorry, I want to say that clearly. I have had a family history of skin cancer. I don’t have skin cancer. Just didn’t want to freak anyone out. My mom’s listening. She listens to every episode. Love you, Mom. But, you know, it’s like, yeah, sometimes you can feel — it’s betrayed. That’s the word. You can feel betrayed by your body, you know, to be like, “But I thought we were cool! I thought you were okay with this,” you know.
Marion:
Yeah. Yeah. So, that, yeah, so the journaling, the pain journal was such a good idea. And so helpful. The randomness idea, that was so helpful. And just the little adjustments, like caring about how other people do certain things. So, I think somebody was doing needlepoint and they had like adjusters to bring the cloth and the materials closer to them so they didn’t stoop or they didn’t, you know, changing the angles, just those little things. Like, I paint right now. You know, I paint watercolors and I sketch. And so many times, I’ve been in the same position for two hours, and, you know, I’m going, wait, this can’t be good right now. So, you know, just finding something that has a different — moving the angle of the watercolor paper and the board, or just standing up and taking breaks. I was not a moderation type of person before I got RA, right. And so, learning the moderation part was, it was so helpful to me.
Cheryl:
Oh, it’s so hard. And sometimes we do have to do feast or famine. Like, you know, one of the group members of the graduates group, like we still, you know, some of us still meet, and do just the support part, not really the teaching part of Rheum to THRIVE. And, you know, she had to go to a three-day Indian wedding. And it’s like, you know, you can’t necessarily pace yourself. I said, you know, if you find any, like miniature opportunities, even just to lay down for five minutes, you know, if there’s somewhere you can lay down at the hotel or facility, you know, but sometimes it’s like, you’re just go, go, going. And you have to kind of use all your energy and drain your battery. And that’s just worth it in those like, you know, special occasions. But in everyday life, pacing yourself is typically helpful, you know, helps you extend your energy and yeah. And hopefully this, you know, you mentioned learning from other people. It really is. It’s like people who have, you know, who have that everyday experience is huge and can validate it. And it’s nice in the group to have people who are in different stages, like you and I have, you know, had the disease for over a decade and a half. And other people just got it that got diagnosed a month ago, or a year or two ago. And sometimes people said, “Oh, do you have like separate groups for the newly diagnosed versus people who have had it for a while?” and I was like, it’s actually really good, I think, to have both because the new diagnosis can see people like us who are like, okay, they kind of, they’re still they’re still struggling, but they have more tools in their toolbox. And you know, and then the us who have had it for a while might learn something from the newly diagnosed person who maybe, you know, they have the most up-to-date information, you know, they could have researched something. Because I don’t like research, you know, every single day, something new about it, you know what I mean? I kind of do my job. But, you know, in general, most people, you get to a point where you’re like, “This is my tools,” and someone was like, “Oh, did you hear about this new thing,” you know? So, anyway, that’s something that I enjoy about it.
Marion:
And one thing, and I’ve got the compression gloves I use. Yeah. And painting, that really helped. It helps with the compression gloves, because when I’m painting and they’re in kind of the same angle, that helps. The only thing I wanted to say was the idea of bringing somebody to your appointment, bringing a supportive friend. Because I actually did that again. I didn’t do that in the beginning, because I was going to handle it and everything, yeah, I can do this. But I had to switch insurances recently this past year, and so I got a new rheumatologist. And so, after 10 years, I have to speak to somebody new. She’s wonderful. She’s wonderful. But I brought my boyfriend because it was so — I didn’t realize how anxious I was to go see a new rheumatologist. I’ve heard so many good things about her before I went, but I was terrified. And I think the main reason I was terrified was I was worried about not being heard. And he didn’t say a word. I think he maybe said two words. But he didn’t have to, but having him there, and having him knowing what, you know, he and I talked beforehand, and I said, “Okay, I want to tell her this. And if she says this, I want to say this.” And I brought my notebook with me. And I brought my journal, and everything was fine. I mean, it was, you know, it went, it was really good appointment. And I love my new doctor. But having that comfort. Because we don’t have to do it all by ourselves, you know? There are groups like yours, you know, Rheum to THRIVE, and there are other people who get it, or who try to get it. If you don’t have rheumatoid arthritis, you’re never really going to get it all. But you can at least try. And those are the people that I want to close to me.
Cheryl:
I love it. I love it. That’s such good wisdom. And if you have a little more time, I have some rapid-fire lightning round questions. I just started doing that. So, I’m really excited. So, well, this one could be a long one. But what’s a nugget of advice or word of wisdom you have for somebody listening who is newly diagnosed?
Marion:
I just want to repeat what I said kind of in the beginning. Being diagnosed with rheumatoid arthritis has nothing to do with your character. It has nothing to do with the person you are you are. You did not do something that karmically you’re being paid back. This has — good people and bad people have rheumatoid arthritis. It has nothing to do with — it’s just, it’s the roll of the DNA dice. It’s, I don’t know. Doctors don’t even know. You know, and they don’t, they can’t give you a clue. It has nothing to do with who you are.
Cheryl:
That’s beautiful. It really is. There’s a great book called ‘Fooled by Randomness’. Because we all want to find a reason for things to happen. But sometimes it’s just random.
Marion:
Well, and I’m a child of a person who passed away from cancer. And after she died of cancer, that was always in my head. What can I do that can prevent, to keep cancer away from me? And then that whole thinking in the beginning just went haywire with me and arthritis, so there’s nothing to do with a person.
Cheryl:
Preach, preach. And do you have a favorite arthritis gadget or tool in your toolbox? I know you mentioned the compression gloves earlier.
Marion:
Compression gloves, anything that changes an angle when I’m writing or when I’m on the computer. Love those compression gloves. I haven’t tried, my boyfriend bought me some adjustments to my paint brushes. I haven’t tried those yet. The pens, the little gummy things that change the grip on the pen?
Cheryl:
Yes.
Marion:
Love those.
Cheryl:
Yep. pencil grips.
Marion:
Yes, pencil grips.
Cheryl:
I think it’s called pencil grips. But yeah, I love those too. They’re good from a sensory perspective, too. Do you have a favorite movie you’ve watched recently, or a book, or TV show?
Marion:
Well, there’s a couple. So, I live in San Diego. July and August, we hit almost — we hit 100 degrees. It was bright. It was hot. It was gross. For me, I have the same heat and light sensitivity now. I developed that few years ago. My partner, my boyfriend, is originally from England. So, we watch a lot of British TV shows. So, like things like Shetland and Vera, and all of that. And one of the reasons why we watch them is because we see green countryside or we, I was watching rain, right? So, it’s 90 or 100 degrees outside and I’m watching rain and I’m like, oh, yes. So, I like to do that. I like to do that. One book that I’m reading and I can give you the author’s name later, but it’s called ‘Rooted’. And she is, she studies nature and she studies the ecology. I might be saying that wrong, but how nature works and how the different systems in nature work. So, a lot of her work is she just sits outside and studies things or she walks out. And I think she lives in the Seattle area.
Cheryl:
Oh, awesome.
Marion:
So, I’ll email you her name. But so, I miss Midwestern type of weather and Midwestern type of nature. So, when I read that, I kind of go back to my happy place.
Cheryl:
Oh, I love it. I love it. Awesome. Do you have a favorite mantra or inspirational saying that you turn to in tough times?
Marion:
I can do this. I can do this. I’ve done it yesterday. I’ve done other things that are just as difficult. I can do this.
Cheryl:
I love it. And what’s something that’s bringing you joy right now?
Marion:
Speaking my truth, right at this very moment. I’m connecting with people that are good for me. And being with my dog. She’s very, she’s just, she’s a little bit nutty. She has anxiety issues too. And she’s had them ever since we got her. But I think because of me having an autoimmune disorder and having to struggle with some stuff. And I have anxiety too. So, I think, you know, we’ve made a good home for her. So, you know, just keeping the good things in, the good people close. That really brings me joy.
Cheryl:
Good people and good dogs. What more do you want?
Marion:
Exactly.
Cheryl:
Yeah. And this is kind of a big, like, meaning of life question. But last one, what does it mean to you to live a good life with rheumatoid arthritis?
Marion:
To do what I can to help others who are struggling with it. And having said that, I want — if you’re newly diagnosed, or if you’re struggling right now, you are not responsible to take care of somebody else with RA. If you feel open to it, that’s wonderful. But be open to other people helping you.
Cheryl:
Yeah, that’s so true. So, many of us with RA and autoimmune disease are helpers, you know. We want to — and that can be one of the hardest things when you get a diagnosis. Well, I don’t want to ask for help. I want to be the helper. I don’t want to be the helpee, you know, or the help. But you have to learn to ask for help.
Marion:
Yeah. Yes.
Cheryl:
I love it. Is there anything else you wanted to share with the audience before we wrap up? I’m so appreciative of your time.
Marion:
No, thank you. I just think, you know, your group, Rheum to THRIVE and, you know, other groups that provide support for RA, are so invaluable, and reach out to them if you have RA or other autoimmune disorders, you know. Reach out to them, because they’re very — it’s really helpful. And you don’t feel alone. COVID and RA combined — RA alone is so isolating. And then add COVID to it, you know, it’s just, it’s been a rough few years for people. So, you know, don’t take it on, you don’t have to do it yourself.
Cheryl:
Yeah, I need to hear that message over and over in my life. I’m like learning that even within, you know, Arthritis Life, all the things I’m trying to do, I’m really needing to delegate more. And like, I don’t know why I put so much pressure on myself to do everything myself, you know?
Marion:
Yeah. Yeah.
Cheryl:
Baby steps, baby steps.
Marion:
Exactly.
Cheryl:
And then where can people — I’m gonna put all your links in the show notes. But where can people find you online if they have any feedback, they want to say thank you for this awesome episode, or ask you any follow up questions?
Marion:
Well, I’m on Facebook, I’m on LinkedIn, and I’m on Instagram. I don’t have my — I’m not really good at finding my handle for Instagram, but.
Cheryl:
I think it’s — I have it because you sent it to me beforehand. Well, and I was also following you. But it’s @invisibly_disabled_marysd.
Marion:
Yeah. Yeah. Well, Instagram, LinkedIn, Facebook; I’m on all of them.
Cheryl:
Yeah. Awesome. Well, I really, really appreciate you taking the time. And again, the spoons, you know, the energy to share and I know people listening have gotten something out of this especially the ones that have been tempted to blame themselves or really internalize those messages from others that, you know, if you just did this, if you just tried that, you know, you’d feel better. It’s your fault. So, thank you so much.
Marion:
Thank you. Thank you for having me.
Cheryl:
All right. Bye-bye for now.
Marion:
Goodbye.
