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Podcast

From Marriage to Friendships: Reflections on Support Systems with Alice Getchell

3 weeks ago
30 min read
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Summary:

In this episode of the Arthritis Life Podcast, host Cheryl Crow welcomes back Alice Getchell to delve deeper into the topic of social support for those living with chronic conditions. Alice shares her journey with multiple health issues, including rheumatoid arthritis, Sjogren’s, fibromyalgia, and chronic fatigue syndrome. 

They discuss the complexities of managing overlapping conditions and the importance of a strong support system. Alice highlights the invaluable support she receives from her family, friends, church community, and online groups. They also talk about the challenges of explaining chronic illness to others, dealing with unsolicited advice, and finding comfort in relationships. This episode serves as a guide for both patients and their loved ones on fostering understanding and meaningful support.

Alice also discusses the significance of finding specialized support groups, such as the ‘Rheum to Thrive’ community, led by Cheryl. Both Cheryl and Alice stress the importance of open communication, patience, and understanding in building effective support systems.

Episode at a glance:

  • Alice’s Health Journey: Alice shares her experience living with and navigating multiple chronic conditions such as Rheumatoid arthritis, Sjogren’s syndrome, fibromyalgia, and chronic fatigue syndrome.
  • The Importance of Support from a Strong and Diverse Support System: Cheryl and Alice discuss the importance of support from family and friends, church community, and online support groups. 
  • Finding and Building Support Systems: Cheryl and Alice discuss Cheryl’s Rheum to Thrive Program and how a specialized community is valuable in building a support system.
  • Dealing with Misunderstandings and Unsolicited Advice: Cheryl and Alice discuss how to maintain boundaries and navigate unsolicited advice.
  • Reflections on Long-Term Relationships: Alice shares insights from over 50 years marriage.

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, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Alice Getchell

My name is Alice and my primary health condition is seronegative rheumatoid arthritis. I have a long list of other conditions, some of which are related to RA and some not. I have no professional expertise in this. I am however a retired clinical laboratory scientist, which makes me just dangerous enough when asking questions while speaking with my doctor. I hope I have something to offer as a patient.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

Full Episode Transcript:

[00:00:05] Cheryl Crow: I’m so excited to have Alice Getchell back on the Arthritis Life Podcast. After we recorded for episode one sixty, she had some additional things she wanted to say, which I was like, welcome to my world. That’s how I feel after every episode that I do too, where I’m like, oh, I wish I said that. I wish- and I thought, we thought, okay, let’s take some time and, expand on the topic of social support today and what that’s looked like for her.

So welcome Alice. Thanks for coming back. 

[00:00:33] Alice Getchell: Oh, thanks. This is great. I love it. 

[00:00:36] Cheryl Crow: Yay. I’m so glad that you do. I do too. So can you just give the audience a brief introduction of, where you live and what health conditions you have. 

[00:00:46] Alice Getchell: Okay. I live in Minneapolis and my health conditions, rheumatoid arthritis, Sjogren’s, fibromyalgia, chronic fatigue syndrome, chronic kidney disease, and there’s more.

But the point being that, I have multiple things and it’s kind of hard to explain that to people. And you don’t wanna explain it to people necessarily, but if they ask and I guess it’s which ones are the most important, I guess at this point are rheumatoid arthritis and dealing with that.

The rest kind of just follow along and you deal with. Side issues as you go, so. 

[00:01:28] Cheryl Crow: Yeah. And I think do you also have osteoarthritis? 

[00:01:32] Alice Getchell: I do. Okay. And that has never been clarified completely as to what parts of my body. I just know what parts I think that’s in. 

[00:01:41] Cheryl Crow: Yeah. So, yeah. Yeah. And I think, I mean, that’s already leading into like the topic of, like it’s hard enough when you’re the one living in the body with multiple things going on to understand like what’s causing what, is it my fibro, is it my RA?

Is it my Sjogren’s? But then to also explain it to friends and family and. They have a hard time also understanding sometimes like the overlapping conditions, it’s just not so straightforward. Right? 

[00:02:09] Alice Getchell: Exactly. 

[00:02:10] Cheryl Crow: Yeah. And before we get to the support systems though, I wanted to also have you summarize a little bit what your journey has been like so far.

I guess I already kind of gave it away that it’s not been straightforward, but how would you summarize your journey with rheumatoid arthritis and Sjogren’s, let’s just say? 

[00:02:28] Alice Getchell: Yeah. It’s been the classic words are up and down and I think that’s true with a lot of stuff in our lives, but I, when I was diagnosed, it was a surprise, so to speak.

And I thought that, okay, they’re gonna find the magic bullet, and so the first thing I tried didn’t work. The second, third, fourth, fifth, six, I’m number eight now. As far as RA drugs, methotrexate, and at the moment I’m on Xeljanz. And right today I can say that I think it’s working and I’m feeling the best that I have felt for a very long time.

However, I’m one of those people who says, okay, is can I trust this? Is the other shoe gonna drop? And so I kind, I’m not looking over my shoulder necessarily to see if it’s creeping up on me, whatever it may be, and but it’s always in the back of my mind. 

[00:03:26] Cheryl Crow: And I would say that’s very rational to be worried about the other shoe dropping when you’ve literally had seven medications in a row where the other shoe dropped.

Like where they either they either never worked or they worked for a little bit and then stopped working. That’s just called like learning. So I think as – yeah, as patients, we have to figure out how draw a line between normal and rational fears and then quote too much quote unquote anxiety, right? To the point where you’re not even able to enjoy having good disease control because the whole time you’re worried about when it’s gonna end.

[00:04:01] Alice Getchell: Exactly. You’re right. 

[00:04:02] Cheryl Crow: I really understand that, ’cause I’m on, I’m lucky that in 22 years I’m on my fifth combination of methotrexate plus a biologic. And, it’s definitely hard not to want worry about is it gonna end, if you’re starting to feel good, 

[00:04:16] Alice Getchell: Right?

That’s right. 

[00:04:18] Cheryl Crow: You just wanna plan your life too. But yeah, so, one of the things we wanted to delve a little deeper into today was social support because that, it can be really hard for people who live with multiple chronic conditions to feel like their friends, family, community members -whether that’s work or faith communities, hobbies, like in my case, swing dancing community- it’s hard for people sometimes to feel fully supported by their communities. Like what kinds of support? Have been important for you and what has that, looked like? Whatever you wanna say about that.

[00:04:50] Alice Getchell: Yeah, that’s, the first thing is, of course, my family has been totally supportive. I mean, I hasn’t been anything negative from anybody. Only maybe frustration from my husband who wants to fix me, wants it to be fixed. But everybody is just so understanding and tries to give me space when I’m not dealing well with something on a particular day.

I have a really good friend, a really good friend who she has lupus and Sjogren’s. So, and she’s got other kinda issues too, of course. But she and I have had just such a great connection for quite a long time. We’ve known each other for many years, but only until I was diagnosed.

We start to get into those deeper, things to talk about with each other. And we share constantly. We support each other. Listen just sit quietly together if whatever either one of us needs, and it’s reciprocal. I mean, it’s balanced. It’s really nice. So, let’s see, who else have I had support from?

Most of my friends, most of the people I play music with. I’ve had one friend who was just totally, when I gave her, to, gave her the information that I’d been diagnosed, just goes, oh yeah, that’s that knuckle thing. And then changed to the subject. And I didn’t feel very supported then, and I still don’t.

But I have tremendous support from my church community.

I sing in the choir. That’s another little family within a family, so to speak. Most everyone in there is supportive. Some of them don’t quite understand, or some of them maybe don’t really get it, but it doesn’t matter because the group feeling is positive.

Who else? I can’t think of what.

[00:06:45] Cheryl Crow: Yeah, no, I think those are the three. I remember, you, after the episode, you were like, I think I wanted to make sure to highlight how lucky you feel and how with your friend, family and community support.

And I thought that was so sweet first of all, that’s though that you wanted to make sure to shout them out. And I think, those who’ve listened to the podcast maybe have heard, unfortunately there are lots of people who don’t have that degree of support.

And you’re in the Graduates group, the alumni group for the Rheum to THRIVErs and we, we hear the whole spectrum in that group.

We hear people who have wonderful support, like you and I consider myself to have a lot of great support. And then we hear people who’ve had tough, really tough times. There’s people who aren’t in touch with their parents anymore, or siblings, people whose parents said, they think you’re faking it or they don’t believe your diagnosis, or you shouldn’t take a medication and they criticize your choices.

So I think the fact that you wanted to express gratitude for your communities is huge. And I obviously, I would say you’re part of the Rheum to Thrive community too. Of course, in the Graduates group. Yeah. Sorry, I didn’t mention that, right? No. I just thought I thought of it too.

You did mention that the other podcast episode too. Yeah, the Virtual Support Group. Yeah. 

[00:07:53] Alice Getchell: It’s in fact, that’s right up there with my family as far as support. I would, I hate having to miss a meeting if I do, and I mean, I look forward to it. Can’t wait for it. And, I’m glad I have, we have once, I mean once a week.

Every, every week we have. So I wanted to say quickly, I have another friend who made a little booklet, which you now I’m blurred everything cute and you can’t see it. 

[00:08:16] Cheryl Crow: If you put it right in front of your chest or like your face, it’ll show better. I figured that out. Yeah. 

[00:08:21] Alice Getchell: It’s hard to see, but it’s on a little ring here and they’re little quotes of things that she collected.

It, I’ll just read the first one that’s on top. Accepting our feelings means being with them without being lost in them. 

[00:08:36] Cheryl Crow: Whoa. That is, I need to remind myself of that. I need to copy that. 

[00:08:42] Alice Getchell: Yeah. And she as her own issues but she’s been just another friend that’s very supportive and. I just wanted to acknowledge that.

Oh my gosh. Yeah. 

[00:08:54] Cheryl Crow: That’s, I mean, that’s beautiful. And I literally, you anticipated my next question, which is: what are some of the ways people have supported you that have been helpful, or people have attempted to support you that have been helpful, and then ones that have been not helpful?

Any other specifics you can think of? 

[00:09:12] Alice Getchell: If a friend calls me or texts me or emails and. Maybe just checks in, maybe they don’t even really have to say, how are you or how are you doing? Or be that expressing that overt concern. Yeah. If yeah. Just connecting and that’s so helpful.

Boy that’s a kind of a tough question.

[00:09:31] Cheryl Crow: I think the earlier example you gave of someone being not helpful was when they kind of said, oh, that’s just, they minimized it, right? They say, oh, that’s just that knuckle thing. Or Oh, everyone has arthritis at our age or something.

[00:09:45] Alice Getchell: Yeah. Actually, yeah, I have had some people say that more than one, in fact. So you kind of start to realize who’s gonna. Get it and who isn’t. 

[00:09:56] Cheryl Crow: Yeah. 

[00:09:57] Alice Getchell: And monitor. How do you respond to those people and maybe not listen too much to what they have to say. Yeah. Just listen to the people that are supportive.

[00:10:08] Cheryl Crow: Yeah. And in, in the Rheum to Thrive, like the coursework, the self-paced course, and in the on ongoing groups, we now have themes of the week for the support group.

And in the Thrive framework, I’m just gonna really quickly deviate to say that relationships, friendships, family, spouse, parent-child relationship, that falls under the R of the Thrive framework, which is relationships.

And the meeting when we talk about misunderstandings and unsolicited advice and how to cope with those, that is always a meeting where,, having done this for five years, that’s the meeting probably overall where I get the most participation, the most people are raising their digital hand and writing in the chat, and they’re talking about their experiences, the good, the bad, and the ugly, of the misunderstanding. Again, the common misunderstanding is that it’s just arthritis, minimizing it and knowing what to say.

People often say, what do I say back when someone says something that’s like out of left field? You should just drink, I don’t know if you get the same, the thing that a lot of people bring up is unsolicited advice. You should just try yoga. You should just drink tart cherry juice. You should just drink, do turmeric.

You shouldn’t take the medications. You should do this. Have you had that ever?

[00:11:23] Alice Getchell: Yeah. A little of that. Not bad, but enough that it was. 

[00:11:27] Cheryl Crow: Annoying. 

[00:11:28] Alice Getchell: So, 

[00:11:28] Cheryl Crow: Like for me, what I say to people in that circumstance, it’s hard to say this is my script, quote unquote, because it depends, A, on the nature of my relationship with the person, and B, like you said, you’re scanning them, like I’m scanning for what is their intent, because I do think sometimes unsolicited advice comes from a really good place.

Like I will say my husband and I are both fixers and so I’ve, obviously, chronic illness has taught me when that I can be a fixer and when I can’t, I need to accept the things I can’t fix. But but if I am aware of, if I see a friend in pain and I’m aware of something that might help them, it’s just natural in my head to wanna make them aware of something that might help them, right?

But the complication is when A), it can come across as patronizing. Right, or criticizing their choices. And one person said “all unsolicited advice is a form of criticism,” which I don’t personally agree with, but I can see why it feels that way.

[00:12:26] Alice Getchell: Yeah. I do recognize when someone’s being, trying to be helpful or giving you, in a way they, they think they’re giving support, which, and it comes from a good place, I think, heartfelt or whatever.

But the other one on the flip side of people who start to tell me about, oh my sister had that and she was just, she just did fine on her meds.

And you, but you should try this, like you said. Yeah.

Or they start sharing their own I have this, I have that. And then they start talking enough that you realize there’s not gonna be much more in this conversation that’s gonna be helpful, and so you figure out how to move out of that conversation, ask them something else about what book have you read lately?

Or, movies or, something different to just change the subject. 

[00:13:19] Cheryl Crow: I mean, that’s such a underrated tip to subtly change the subject. Because I think I’m the kind of person when someone asks me a question, I feel like a compulsion to answer it, right?

Or if they gave me misinformation, I feel a compulsion to correct them. And we’ve talked about this in the Graduates group and in other groups too, where then you’re just, you get in this endless circle.

Like I’ve gone around in circles with people, the people, especially in my case, that are like, you shouldn’t take Western medicine, blah, blah, blah. And I want to just inform them and tell ’em about all the scientific research.

And then I realize it’s, if people’s minds are open to change, yeah, it can be helpful if they truly are open to learning new information. But if they’re not, if they’re like completely dead set on their belief that you should be able to control RA without medication, nothing I say is going to change.

So being able to subtly say right now I’d rather focus on other things. What are your summer plans? Are you guys going on any trips or, changing the subject and putting the ball back on their court so that they’re kind of forced to talk about something else.

[00:14:20] Alice Getchell: Yeah. And make it an easy segue, not just Yeah. Suddenly burst out I, 

[00:14:26] Cheryl Crow: or be like, Hey, I had a question for you. Actually, this reminds me, I had a question for you. And then say the question and, yeah. I mean, I’m not very. Subtle as a person. So I’m not very, probably the one to give advice on subtly changing the subject.

But one of the things sometimes people have brought up in, in the groups, some group wisdom I’ll share is to say something like a really neutral statement. Oh, okay, I’ll keep that in mind. Or, interesting. Yeah. I guess we all have different beliefs, anyway, oh, someone’s calling me.

I gotta go.

[00:14:53] Alice Getchell: Yeah, those are good. That’s good. 

[00:14:55] Cheryl Crow: Yeah, and I don’t know whether, again, if you don’t have any specific advice, that’s totally fine, but do you have any advice for somebody listening who might feel like they don’t have a good support system, or that their support system just really doesn’t get it?

Do you have any tips for them?

[00:15:14] Alice Getchell: Yeah. That’s especially hard for people whose family – some people who say, there’s no one in my family, or maybe there’s one person, but everybody else is just puts me down or ignores me or this is me dismissing.

But I think what I would tell somebody is, if you have what you feel is no support or not enough support, find a support group online with the person named Cheryl Crow.

[00:15:46] Cheryl Crow: Oh, I did not pay her to say that. 

[00:15:50] Alice Getchell: Oh, right. No, it’s just, but you and the groups have been like a lifeline because you all have information.

You, but all the people in the groups, yeah. They each has something to offer. And if you are a person who can be open to that, and not just kind close off your mind and ignore everything you hear. Just that’s a great place. I don’t think that I thought of that initially when I was diagnosed and, but somehow gradually found my way.

And again, it’s just, it’s been the best. Thank you. 

[00:16:28] Cheryl Crow: Thank you. It really is. I mean, a group is only as strong as the people in the group, so I feel really lucky that the kind of, the kind of support, the kind of. Community we’ve built has been really astounding, to be honest.

It is right now is the five year anniversary of when I started the first group in what was in May of 2020. And so it’s, I’ve been doing a lot of reflecting back and thinking all my fears, all my hopes, it has been really even better than my hopes.

So, so I think, yeah, there is no substitute for people who’ve been through what you’re going through or something similar. It’s not just about the Rheum to Thrive group. There may be a different one that, that is better for your schedule or better for your flow.

The Arthritis Foundation has a monthly support groups that are in different geographical areas and there’s, other like Spondylitis association of America has some support. There’s a lot of different places you can get support too.

So, some people like more of an in-person group, so if you are looking for recommendations, feel free to contact me as well. And all the on my website, there’s like a contact me form if you are looking for something. ’cause I do try to be really objective to look, it’s, I’m not saying that my group was the only one.

I do think it’s special, and of course I tailor made it how I wanted it to be in terms of the educational framework the educational components, but also, but the spirit of the group I say in a non-religious sense the subjective quality of what it just feels like to be in that zoom room together and support each other through so many ups and downs.

So it’s just, it’s been wonderful. And again, I don’t know firsthand what it’s like to not have family support, i’ve been extremely lucky, but also thinking about the concept of chosen family, the people that you can find in either in-person community, or online can be huge. 

[00:18:10] Both: Absolutely.

[00:18:11] Cheryl Crow: And then just last question for this episode today. ‘Cause again, this is a follow up to episode one sixty. So if you wanna hear all of Alice’s answers to the rapid fire questions at the end and everything else, you can listen to that one. But I actually really like this idea of really deep diving on a follow up episode.

Do you have any advice, for somebody who is like a spouse or a loved one, or a friend of somebody living with rheumatoid arthritis and Sjogren’s, who’s I wanna support my friend.

I don’t know where to start. What do you recommend that they do? 

[00:18:43] Alice Getchell: Or I don’t know if this is the only answer. Certainly not. There’s lots of answers. Yeah. But ask the person. 

[00:18:51] Cheryl Crow: That’s what I was gonna say too. Yeah. Yeah. 

[00:18:53] Alice Getchell: What’s helpful to you? What is there that I can do or say that would be helpful?

And let them talk. Let them just tell you what maybe how they’re feeling, what they’re going through, and listen closely. And maybe something will come to surface in that conversation, or you’ll just get a better overview of things and just be sure to listen. That’s the thing. 

[00:19:22] Cheryl Crow: Not only ask, but then actually listen when they answer and know that it’s okay. If your friend who has the condition doesn’t know what they need at the moment, just say, it’s okay if you don’t know what you need, but I want to let you know that I am here. I wanna be here for you in the way that is best for you.

Another thing I would say is asking the person who has the condition are, i’m here for you if you want to vent and just, I’ll just be listening or I’m here if you want solutions.

It helps me to know if you are looking for one versus the other, because we don’t wanna, sometimes I’m looking for solutions. Like I said, my husband’s a, a fixer, and he’s good at finding solutions to solvable problems. So sometimes I want that, but other times I’m like, I know there’s no solution. Like to uncertainty will this medication work or not? We don’t know. That’s uncertainty. So can I just wanna vent and just, can you sit with me in this murky area rather than trying to make it solved?

[00:20:18] Alice Getchell: Yeah. Because you can’t solve it. I mean, it’s just not. One of those things that has a single solution or yeah, and I think if you let the person with the condition, let them just be, if they’re in a bad spot. 

And if they’re able to verbalize that they’re in a bad spot and don’t talk to me. Just let me have some space right now.

[00:20:44] Cheryl Crow: Yeah.

[00:20:44] Alice Getchell: Distract me, talk to me about something else, or can we, the person with it isn’t necessarily gonna think of, oh, let’s go have coffee, it just has to be something. You have to have a conversation with the person.

[00:20:56] Cheryl Crow: Yeah. I, as you were saying that I remembered sometimes people will say I don’t wanna have to tell my husband how to support me. He should just know.

Personally, I’m gonna give you tough love on that. No. Nobody’s a mind reader. No matter how well you know someone, you don’t know what they want in the moment unless you ask them.

So it’s okay. It’s valid to wish that people could read your mind, but it’s not valid to expect them to read your mind or to be mad at them for not reading your mind. I would say get over that.

And understand that you are not gonna get what you want by expecting someone to read your mind. If you told ’em what you want and they’re not giving it to you, it’s a different issue.

[00:21:38] Alice Getchell: Yeah. I’m sorry. I was just gonna say, and it works both ways. I mean, it isn’t just you. How was, how would I say that? Yeah. Reading minds, I think. A lot of people that do that. It’s a two-way street, in other words.

Everybody does try to do that I think sometimes, but just realizing that nobody is gonna know what’s going on up here and be patient, if possible.

Yeah. And patience is hard too.

[00:22:06] Cheryl Crow: Yeah. How, I actually don’t think I’ve ever asked you this. How long have you been married?

[00:22:10] Alice Getchell: 55 years. 

[00:22:13] Cheryl Crow: Oh my gosh. Yeah. Amazing. 

[00:22:18] Alice Getchell: It’s amazing to me too, because he and I have conversations about that. God, do you believe these numbers? What they keep getting bigger and how did that happen?

Yeah. And then, yeah, and then, I don’t know, sometimes we’ve had people say how did we stayed married that long? And I, I can’t answer that. It’s just one day at a time. And you keep dealing with what comes up next.

And I’ve often told him, I sometimes feel like the two of us have had several marriages. ‘Cause there’ve been all these scenarios in our lives where when we got married, he was in the service. 

And he got out of the service. And then we had a period of years where we were both working and that’s all fine. And then, finally we had a child, and so then that’s the next phase. So in a way, I kind of consider each of those separate marriages or something.

[00:23:16] Cheryl Crow: Yeah, I mean, I’m, I’ve been married now for 13 years and I feel like there was definitely chapter one of pre-kids and chapter two, sorry, we have one kid, but one, you’re already outnumbered if you have a only child, but yeah.

Then chapter two was kind of, the pandemic kind of, and Charlie being of school age, so kind of birth to five, there’s pre-kids, then there’s birth to five, which is kind of survival mode.

And then there’s when your kids more independent. And for me, so there’s already been three chapters, three different, in a way like marriage stages.

Again, I asked you the question, but just to share back my experience is it’s almost been like a rediscovering of who the person is now, ’cause they’ve, they change too. And if you’re lucky, you change in a similar direction, and some of that, that maybe is a little bit of luck and a little bit of good choosing in the first place. 

[00:24:11] Alice Getchell: Yeah, that’s, yeah, that’s true. 

[00:24:13] Cheryl Crow: My, my dad said to me, in my twenties I had a couple of different, I was like a serial monogamist, like somebody who’s really interested in being with one person and really committing and, but didn’t kind of find that long term person who was perfect for me until my later twenties.

And so in my early to mid twenties my dad kind of at one point had to tell me, he’s like, you know, life is just gonna get harder from here on out. So just keep that in mind. If it’s already hard to be with somebody, and this is not saying anything about my, exes , they’re all amazing.

I have like literally no, nothing terrible to say about anyone, but sometimes people are just different. They want different things and that just, they’re just not as compatible. And if you’re already struggling to be compatible when you have no kids and you’re just working and swing dancing and doing your like fun little 20 something life, you’re starting at a point that’s gonna make, that’s gonna be harder to -do you know what I’m saying? When you add more complications in life, like children or parents health issues or whatever, my own health issues.

So that speaks to the idea of choosing someone in the first place, who, even though you’re all gonna, you’re both gonna grow and change over time, choosing somebody who you feel like you’re already similar enough to, that you’re gonna grow together.

That’s my case, but I don’t know if, do you think you did that 55 years ago or maybe not? 

[00:25:31] Alice Getchell: This is sort of – it happened. Not in the way I would’ve expected. Because we met and in within just a few weeks, maybe even only two, we both knew.

[00:25:45] Cheryl Crow: That’s how my parents were. They’ve been married over 50 years too.

[00:25:48] Alice Getchell: Yeah. Yeah. And it was amazing to me. And I thought how is this possible? And it’s like you just know.

And okay, we met two weeks, we kind of knew and six months later we got married.

And I really feel, I think we both feel that it’s the soulmate thing. Aw. There’s something deep that you just, it’s just a feeling you can’t explain. 

[00:26:17] Cheryl Crow: That’s really sweet. That’s, I, now I feel like everyone’s gonna wanna see a picture of your wedding pictures or, but no, you don’t have to share those if you don’t wanna.

[00:26:26] Alice Getchell: Yeah. 

[00:26:27] Cheryl Crow: But that’s really sweet and I just really appreciate you taking the time to, to delve more in into this.

In a way it’s painting a picture just to someone listening of, of what a positive support system might look like, and I think that’s, and it, like you said with a marriage, they’re all different. I disagree with Tolstoy. I think all happy marriages are different and all unhappy marriages are different. Everyone’s different.

But it’s beautiful to see, that you have that support, not just from your spouse but from your greater community as well.

So, again, if, anyone wants to listen to the more of your like, story of navigating RA and Sjogren’s and stuff like that. That’s episode one 60, but for now I’ll say one last thing and then I think we’ll wrap it up.

Earlier you did mention, going through eight different medicines in a relatively short amount of time. That, I want people listening to understand that there is like a percentage of people with rheumatoid arthritis, it’s depends on the study you look at, but it’s like between five and 20%, and I’ll put citations in the show notes, but, up to 20% of people with rheumatoid arthritis have what’s called difficult to treat ra, and it means that their RA doesn’t go into remission on the first one or two meds that they try.

The majority of, if you’re listening, I just want you to know that’s statistics are still in your favor. If you’re newly diagnosed, that you’re most likely gonna be in the 80% area, but know that there is a possibility that you might be in that 25 to 20%.

But I just don’t want people to be scared unnecessarily, like to understand the statistics to say, okay, most likely I’ll be in that 80%. So just cross gentle crossing of fingers for you if 

you’re newly diagnosed.

[00:28:03] Alice Getchell: Right? Yeah. I was just gonna say too that it’s, I’m seronegative for rheumatoid arthritis, so it’s, that’s why I didn’t get diagnosed sooner enough until damage was done, and the doctors who tested me said, oh, you don’t have it. The markers aren’t there. It was just diagnosed in a different way, MRI.

So. 

[00:28:24] Cheryl Crow: Yeah, it’s definitely not just like ra, Sjogren’s is and RA are both not just one blood test. There’s multiple things they take into account. So. Thank you again for coming on and sharing about this and I am, maybe we’ll do another follow up later, but for now we’ll say bye-Bye for now. Thanks so much.

Thank you. Thank you. Bye. 

[00:28:46] Alice Getchell: Okay, bye-bye. 

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