The Unseen Silver Lining in Chronic Illness: A Personal Journey with Suzy

I've been marveling at the strength of Suzy, a remarkable polymyositis patient, who held her ground at work for 15 years even while battling progressive muscle loss, fatigue, and overwhelming stress. It wasn't until she finally opened up about her chronic illness and embraced support from her workplace that a profound transformation began to take place. We discuss our shared journey of navigating the often murky waters of chronic illness, focusing on the importance of sharing our experiences, finding support, and understanding our nervous system's role in chronic illness.

I recall my own experience of exploring the disability process and realizing the profound necessity of advocating for oneself when seeking medical treatment. The tricky part was learning to accept help from friends and family, and to openly communicate about my needs. I found comfort in small gestures of understanding and support, like when my mother baked me a gluten-free pumpkin pie for Thanksgiving. 

The journey through chronic illness is often fraught with unfamiliar challenges and adjustments. Yet, as I found in my journey with polymyositis, there is a silver lining to be discovered. Seeking innovative solutions to manage symptoms, researching the best options, and connecting with a community of people experiencing similar struggles can be incredibly empowering. I was particularly inspired by my friend Angelique Ingram's recovery story, which ultimately led me to start speaking about my own experience of living with a chronic illness. Join me as I share these insights, aiming to inspire and encourage you in your unique journey.

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Keep your spoons close and support system closer.

Transcript

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Embracing Chronic Illness and Self-Advocacy

Jen 0:13

Hi , my Spoonie sisters . I'm your host , Gracefully , Jen , and I am so thrilled to bring to you another new Spoonie Sisters , at least new to me . Hi , Suzy , how are you today ?

Suzy 0:26

Hi , I'm good , Jen . I have two spoons , but I'm hoping I can be a contribution to your listeners . And for me , this is what it's like having chronic illness .

Jen 0:40

It's like you do your best , you show up with whatever you've got , absolutely so I'm excited to be here with you , absolutely 100% , and I think it's good that sometimes we , as guests , come on and share what it's really like . We're not always going to have a full spoon day , we're sometimes going to have brain fog , and so these episodes may not be perfect , but we're not perfect and I think what's so important to share with our community .

Suzy 1:07

Yeah , I do too . You know , I'm moving away from that need to be perfect that I had for a long time . It just wasn't serving me , and I think that's one of the gifts of having chronic illness is like I just couldn't do it all anymore . I couldn't pretend that everything was okay , because it was just so obviously not . So yeah , I love that . Just showing up and accepting that whatever happens today is enough and I'm enough and it's all good .

Jen 1:40

Yes , you are always enough just as you are . There is no reason for us to put up smoke and mirrors . So do you want to start out by giving us a little bit of your backstory and tell us about yourself ?

Suzy 1:52

Yeah , sure . So I had a 15 year career as a case manager with Veterans Affairs and I started to notice towards the end that I was having a lot of difficulty with my symptoms . I was diagnosed with polymyositis in around 2011 and I kept it really quiet . You know I was doing the pretending it's okay thing . But it got to a point in about 2019 or 2020 , end of 2019 where I was having a lot of falls .

Suzy 2:37

So this condition , first of all , it's like a chronic . It's rare , so not many people have heard about it . It's in the autoimmune family and it causes progressive muscle loss and muscle wasting , fatigue , chronic fatigue . So I was having falls and I was having accidents and the mobility just it was horrifying . It kept declining and I wasn't getting support . I was trying to keep it quiet .

Suzy 3:13

So it was really difficult emotionally because I was working in a fairly stressful job . My clients had PTSD and addictions and it was a really busy sort of caseload . So it became a lot and I found , with the medical appointments that we need to go to with chronic illness and just the day to day reality of managing with fewer spoons , that it was too much for my nervous system and I was really feeling a lot of stress and overwhelm . So I was a person who , up until then , was really low maintenance at work . It's what my manager loved about me I would just keep my head down and work and was a good employee and a dream to manage . And then all of a sudden , she asked me to do an extra project and I said I had to be honest . I said you know , I'm just keeping up with the basics and here's what's going on for me , and I started to cry and I was not somebody to express my emotions like that , but I was at that point of overwhelm and she was incredible . I am so grateful to her to this day because she said to me you don't have to struggle like this , there is support available .

Suzy 4:37

So we talked about options and I needed to get my head around wow , actually allowing myself to apply for disability when I was trying to do it all and keep it all together and not need help and was worried of the stigma of that and letting my clients down and my colleagues down , and really focused on other people . And what I needed to do was to focus on myself , to turn inwards and really see that sometimes it is okay to ask for help . But that was the beginning of the process , when I didn't have those skills and it really took and that's one of the gifts of this illness is it took the entire I want to say three years that I was on disability . I have just recently retired , because that's one of the benefits of working for the federal government in Canada if you're on disability and you're not recovering , that this is an option for you . So it really took the whole three years for me to get the that I could advocate for myself , that I was worthy of support and all of the other things that I learned along the way .

Suzy 5:54

So it's been a journey and so right now I'm in a life transition and I I'm a spaceholder , I am a writer and I am moving into my next chapter of speaker and coach and healthy love teacher , and so really this is a time of personal transformation . That's what I've been doing a lot of in this break , in this disability break and now retirement is really focusing on the things that I didn't have time for or the spoons for , because I was working a really stressful eight 10 hour job and now I can turn inwards and really pay attention to my body and my needs and follow my passions and what's important to me . So excited to be in this new phase and yeah , it's lots of change right now .

Jen 6:52

Well , wow , I mean , it sounds like there was about eight years where you were holding it in and holding it together as best as you could at work , and I commend you for that , because I I don't know if I could take eight years of of holding it in and doing it along .

Suzy 7:09

Thank you . It was such a gradual process like the decline in my body and the symptoms that it's kind of like if you heard the analogy of the frog who will slowly boil to death in hot water if you just gradually increase in the temperature Kind of horrifying image , but it's like that like I didn't notice how much it was affecting me and Till it got to that point of overwhelm I wasn't tuned in enough at that point to my inner experience and I was so independent and focused on other people and you know all that stuff , people pleasing that that I was really trying to be a good employee , trying to be productive , trying to serve my clients , not be a bother to my manager , all of that stuff that was really not taking care of me . So I think that's what fueled that . And so the gift to get of the illnesses it kind of knocked me down literally , like with a bunch of falls and injuries and said hey , wait up , susie , like you need help .

Suzy 8:17

And that was the beginning of okay , I guess there's something here for me like I need to look at it . I can't deny it anymore . It was a denial .

Jen 8:29

You know it's interesting to me because I was diagnosed with RA in 2012 , so you know , kind of almost similar time frame . And it's interesting when we're further down the road , as we are right now , to look back and see where we were at and how the process went . And I think it's great when we're 10 or 12 years down the road to be able to look back and help others that are newly diagnosed and and struggling the way that we either didn't see at the time or we were overwhelmed with at the time . Have you had people reach out to you To ask questions or for support ?

Suzy 9:41

It's new for me , jen , to actually be loud and proud about my illness . So I would say that process is beginning now . I do freely talk about it and I share what's worked for me , but I'm also

Sharing Experiences and Offering Support

Suzy 9:59

Sensitive about not wanting to , I guess , preach or teach people , unless they ask me like hey , like I've got this Condition or I'm experiencing pain or overwhelm , and then I might gently guide them to Resources that have helped me . But I start with just listening . So I think that's where , where I needed it , I needed Somebody to care , first of all , to notice . So I will check in with people if I know they're struggling with something and ask how they're doing , and Then to just be there to listen that's what I meant by space holding earlier is offering that empathic , compassionate listening so that somebody feels deeply heard and that they matter and they're cared for . And I think that's my , my biggest skill or strength that I bring to people .

Suzy 10:57

And I'm a little shy about , you know , mentioning resources because I had so many people on my journey trying to fix me . I Tell them I had autoimmune and oh , I got that , I've got this diet and I had a friend who recovered and and Then I feel that , oh , I can't talk to this person about my illness anymore because I didn't go on that diet and they're gonna think that I'm not doing my bit because I didn't follow their advice and so I get this over and over . So I I think that's why I'm quite sensitive about Offering things , but if there's an opening , if someone's asking me , sure I will , I'll let them know . Well , this may not be what you need , but here's what works for me . So that's the phase I'm moving into is the coaching and the teaching , but it's a journey . It's a journey for me to really feel okay about sharing my wisdom with somebody .

Jen 11:55

It's Going to get easier . The more people that ask you , it's going to get easier . But I , I definitely can sympathize with you . You know , I had people always telling me oh well , have you tried , you know , putting out sugar ? And have you tried this and have you tried that ? Or ? Or here's this cream that I love and and I , depending on the person and how close we were , I had to either just Try to explain myself or move on , because some people get it and some people don't , or don't want to get it , and so really , what we have to do is just take care of ourselves and and that's priority over trying to argue and over explain it to someone that doesn't want to get it . Yeah , but I , oh my gosh , just listening to you , I think , I think you'd make a great therapist .

Suzy 12:47

Thank you , jen . I Actually here . I believe that I'm not a hear that a lot . I hear that I'd be a great therapist or coach , so I'm having to eternalize that and make that part of my identity Because it is a shift and so I do want that , I do see that for myself in the future and You're helping me . This is actually my first time going public with my story .

Jen 13:14

Yeah , I'm really grateful to you , thank you . I was so honored that you reached out to me and and that we can share your story . I I don't know how to explain it to people , but you have this , this calm that talking to you , looking at you , it's just you share this calm and that's why I think so many people think you would make such a good therapist or a coach , because you just you just somehow spread it out . I don't know how you do it , it is just kind of coming out your pores .

Suzy 13:48

That feels really good to hear , because people need that people struggling from chronic illness . It is as much about our nervous system as it is about the actual illness or diagnosis or what's going on in the body . There's so much influence that our nervous system plays , and I don't know about you , but I spent a lot of time freaking myself out about my symptoms , like , oh my God , when is this going to go away ? Oh , it keeps getting worse . How am I going to fix this ? I don't know what to do . Let me call this person , let me search on the web , and that never led anywhere productive .

Suzy 14:35

It just really reinforced that message to my nervous system that I'm not safe and I'm not okay and I'm not going to be okay . So there's this part inside of me that was terrified and hopeless , that I was never going to recover . There was no hope . So why even bother ? Like , why bother exercise , why bother doing these treatments ? And I became kind of apathetic . So , with you telling me that I bring this calm , I think that's what we all need when we have a chronic illness . We need to learn , first of all , receive that from others it's really helpful but then how to learn to do that for ourselves , so that we're not freaking nervous system out and making things worse , because stress is the biggest sort of impact on our health and , yeah , I would like to be able to serve in that way to help people to know how to do that for themselves .

Jen 15:44

And you know , I also think it's so important for people to recognize that you still have so much to offer , so your life might look different . You might not be able to do the job you used to do and loved , but everyone has so much to offer and so it's kind of I don't want to say exciting , but in a way it can be an exciting journey to find yourself and redefine yourself and see what you've been blessed with in your life as a skill set to offer to others . And so many in our community have been blessed with the knowledge and the courage and the empathy for others , to help support people , and I think that's fabulous . There's so many amazing people in the community and you know , as much as I hate how I feel sometimes , I wouldn't change it . I don't know about you , but I wouldn't change it because it's made me who I am today .

Suzy 16:44

I couldn't agree more . I have learned so much from this illness and it's like a university education that we get , isn't it With this ? Like the amount of lessons that come with it and , like you said , the empathy and the compassion , because we can see people now , like when I'm walking outside , going to the grocery store , I see the people that are struggling . I see the elderly people that feel invisible . I see somebody struggling to get something off a shelf and I make them feel visible , I talk to them , I ask them if they need support , and that's a gift that we all bring , because we know what it's like to struggle and to be afraid to ask for help or to think that help isn't possible or that we don't deserve it or all those things that we may have heard , and so to be able to reach out to someone and offer that , just the first thing . Like I see you . I see you and I care and I get that you're struggling and how can I help ?

Jen 17:58

Absolutely , absolutely , and sometimes I feel like we can even see it in their eyes . So , even if it's not visible with their movements , the moment you connect and you see someone eye to eye , you can just see that there's something going on there . And it can be the checkout lady at the grocery store . It can be anyone , and I love the fact that it's made so many of us more open to that and more open to supporting people around us .

Suzy 18:28

I can't wait to meet the people in your community . I don't have an active presence on social media so I haven't done really a dive into your to look at your followers and the contributions there . But from what you said , I think I'd really enjoy doing a bit of that and meeting these folks .

Jen 18:47

Oh , 100% . I feel like I could give you a list of 30 people that you would absolutely love , wow .

Suzy 18:54

So pretty new friends . I would love that .

Jen 18:57

Absolutely . How did this illness teach you to advocate for yourself ?

Advocating for Yourself With Chronic Illness

Suzy 19:07

Wow . It started when I began that disability process . So my manager was encouraging me to look at options and we started by reducing my caseload and then that wasn't enough . That just sort of increased the stress because I had less time to do quite a bit . And so I began to look at disability and I needed a doctor to support that and fill out the forms .

Suzy 19:40

And the first doctor that I had was great in the sense that she enabled me to go on an alternative off-label medication that I had heard did wonderful things for people with autoimmune , and so I was grateful for that . But then I needed more support . I needed the disability application , and her belief was that the best thing for people who have illness or chronic illness is to do more like to be active . So she didn't quite get the spoon theory at all and she also didn't get that that I am quite active , I have personal interests , I have things that would nourish me and keep me off the couch and , you know , eating candy or whatever the image she had of people who go on disability they just kind of give up on life . She was trying to protect me from that . So I didn't get the support that I was looking for and I realized , wow , like I do need this help . So I it was really challenging for me , but I I thought , well , I need a new doctor .

Suzy 20:58

So I began to research and with the next doctor we did a meet and greet and I let him know I may need support from you one day . Here's what's going on with me and I may need help to apply for disability . Is that something you're okay with ? He's like absolutely . If my clients feel that they need this , like I or my patients , I , I believe them and that's what I needed to hear , because I think we are experts at our body and what we're needing and somebody who just sees us for a 15 minute visit . They really don't have a clue or much of an understanding of what the day-to-day life is like . Yes , I may look okay and you may not see anything visibly going on with me , but if you ask me about my day , it's a very different story . So he was very supportive and he was also supportive of me continuing with natural health treatments . I had done 15 years I think it was of the traditional medications and nothing else really , and that didn't move the needle for me . I kept declining , so I went to the natural approach and started to combine them and then needed support around that . So , yeah , he was great , but that was me advocating to move away from the other doctor , as uncomfortable as that was to interview the next person , and each time I had to fill out those disability application forms I needed to go through a process of wow , like worthiness , almost like I didn't feel worthy of the help or the support . And a couple of therapists helped me with that . Like it's not about being worthy of it , it's about you need it and people are here to support you . You just need to ask , you just need to own that . Hey , this is what's going on and I need help , and , and when I started doing that , people were so generous and offering to assist and support me , and so I've been really blessed with the disability system and the medical system here and now .

Suzy 23:32

Where I'm at is learning to be loud and proud with my illness , and so the last few months , it's about learning to talk to friends and family about what's going on , and also newer connections that I only know on Zoom , and when I go out to meet friends , you know I need to ask like , is the bathroom on the main level , do you know ? Or sort of just to check out . I'll do the research ahead of time and find out about whether I can handle it mobility wise . You know , if I'm going to a picnic , is there a picnic table ? Because I can't get up off the ground and being able to receive support as well , like if I'm out at a restaurant with a friend . Sometimes the chair is too low and I'm unable to get up on my own and a friend will see me struggling and at first it was really hard to accept offers because it's kind of an intimate thing helping somebody get out of their chair and I started to allow that . And also , with my dietary needs , I try to eat low inflammatory .

Suzy 24:57

So since about 2016 , I've cut out gluten and dairy and a few other things , and that's a little bit hard when you go out for dinner or you're invited places and now I'm not embarrassed to let people know ahead of time and then that way I can bring my own food or make my own arrangements , or sometimes they will also have a similar diet and have things there and they'll let me know the options .

Suzy 25:24

So checking out the food options , and my mom even offered me to start making gluten free pies . Last Thanksgiving we had a pumpkin pie and , yeah , I was really touched , you know , because I had hid this side of me , that I was finicky about food . I thought that they would judge that or something and all of a sudden I was able to talk about it and my mom said oh , that's why you haven't been eating dessert , you know , and you must feel so left out and I would love to do this for you . Can you send me a recipe and let me know where to get the stuff ? And so , just letting people know , and then seeing that support is there , I had been cutting myself off from receiving it .

Jen 26:11

That's incredible . That's incredible and that had to feel so good to have that pie .

Suzy 26:17

Oh , it was the best pumpkin pie I had ever had my partner had ever had . It was delish , like so good . It's a medical medium recipe . I love his recipes and , yes , it felt so good to be to matter . I think that's what I really felt is , oh , my needs matter and my mom really cares , she wants to support me in this , she wants me to enjoy dessert and , yeah , that was very moving . It was really , yeah , a great experience .

Jen 26:53

Okay , so how have you adapted to your declining mobility over the years ?

Suzy 27:02

Ah , good question . It's , I think , a lot about being resourceful . You know , with chronic illness we see that the changes tend to be gradual , but then all of a sudden there's a new thing that we can't do anymore . Right , and it's upsetting , it brings up feelings and it also brings up needs , like , okay , how am I going to work around this ? Again , I don't want to freak out my nervous system , but I realized that I need support now to get off my toilet . So that was one of the first ones , and so it was enlisting my partner to help me

Finding Support With Chronic Illness

Suzy 27:45

research , letting him know here's my needs . He would see it anyway Like I was falling a lot when I was out walking , and so we got these walking poles and now I can go for a hike on gentle or flat terrain still in the woods , but something that doesn't have steep slopes or stairs , when I use my walking poles for support , and then I feel really safe .

Suzy 28:12

And we researched where to get the highest toilet seat you could , and I have a 21 inch bowl and so I don't have to struggle . And then , looking for things , actually my friend gave me she could see when we got together how difficult it was for me to get up . And I talked to her about the toilet adaptations that I had been using and I said but it's a little harder on the go . She's like oh , my friend gave me one of these portable urinals . I haven't used it and here and so I'll use that on the days where I'm having a flera and I'm having trouble getting off the toilet , using my sort of gymnastics , Like there's a lot of things I can do using my triceps to get up , but when that fails or there's no grab bars for support , then I can pull up the urinal . So I keep it in my purse . It's discreet , nobody knows I'm using it , except your listeners now and whoever else you know . Here's this , but it gives me anything to give me or give us peace of mind , is worth it .

Suzy 29:22

And so looking for these little ways to adapt when , when I notice a loss of function not going into the fear and the overwhelm , but okay , here's a new thing , let's accept it . And what would make this easier for me ? Somebody else in the world must have this problem . Let me get on Google , let me ask , you know other people . And then the resources are there , like I really haven't .

Suzy 29:52

I haven't had to flounder , like there's not been a situation yet Knock on wood where I've been out and I've been completely stranded and not been able to get up . I did fall in the parking lot about a month ago at my partner's place . He wasn't around and I knew that it's just a matter of time before somebody walks around , you know , in this area , and I called out for help and this big , strapping guy who looked like he just came back from the gym like the perfect person you wanted that situation , came over and lifted me up by the belt loops and that was good . So it's about trust for me and it's about resourcefulness and asking , asking for support , asking for help on ideas with people who are good at resourcing or researching .

Jen 30:47

Okay , so my next question for you is are you ? Are you in a support group ?

Suzy 30:54

Yes , understanding myositisorg was really beneficial for me in many ways First of all , to learn what myositis is and what all the yeah different variations of it are . I have polymyositis , but there's a number of others . What that did for me , especially when I was beginning to apply for disability , is it validated experience that , yes , I have limited spoons and fatigue is part of the illness and I'm not being lazy and you know I need help to just get through the day , and so it really validated a lot of the things that I was going through , energy wise , but also just helped me to clarify what the symptoms are , and so I learned about the illness . And then it was just a great community because they would have these presentations from people that had helped others in the community . So one came on and he talked about a form of exercise that was helping a number of myocytes patients , and it's called blood flow restriction training , and so this was great because I really needed something . Exercise was challenging , but this was something that didn't require you to be a gym rat or a bodybuilder , and people actually in rehab and in hospitals can use this device and increase the amount of muscle strength that they'd be able to get from just regular exercise . So the presentations were helpful , but lately I needed to go on because I was struggling with faith .

Suzy 32:55

About two months ago now , I was really not knowing anybody who had recovered . It's a small community , you know . I think there's 100,000 people , if that , in the US that have myositis . So it's hard to find people who have recovered . There's a lot of people that are still with the illness and in very severe forms .

Suzy 33:17

So I went on and found this woman and I think she's a friend of yours , angelique Ingram , and she had written a chapter in a book . Light Through the Darkness was the name of her chapter , and the book is Women Thrive , and it was co-authored by a bunch of women who talked about their recovery stories from either physical illness or mental illness or whatever hardships they'd had in their life , and so I got inspired by her . She had recovered from a really severe case of I'm not going to be able to pronounce it dermatomyositis , I think it is . So I reached out to her . I let her know I'd read her chapter . Could we chat , because I needed to To . Okay , I'll pause here . Let me know when you're back . Oh , I can't hear you . I can see you . I hear you now .

Jen 35:20

Okay , the recording's continuing now . I don't know what happened . Yeah , okay , so I think it cut you off right around talking about Angelique Ingram . Okay .

Suzy 35:34

So we had a coffee chat , angelique and I , over zoom , and she was really helpful and inspiring and just lovely and I told her that I am interested in moving into speaking and she told me about you and said , hey , you know , why don't you begin doing podcasts ? And I have this amazing friend and she's got this community in the chronic illness community that you could be part of and so just building that community , beginning to speak about my story and what's going on with my health and contributing in any way that I can to people and to listeners . So the support through that community has been really wonderful and I encourage anyone who is struggling to look for that , because these are the people who are going to understand you . Your friends and your family are going to really try their best , but they're not going to get it . They may assume that just because you look , okay , that you can do , you know a six hour , get together with your family and friends and not be affected , and you know stuff like that or that . You know you're going to enjoy this , this party or this gathering , or it's easy to go on vacation or whatever it is , and they don't get the reality of our energy level and mobility or pain or whatever symptoms your listeners are experiencing .

Suzy 37:19

We all have different ones , so find your community and they will be the people that you will feel supported by , understood by , validated by and I really needed that because it can be so isolating right to have a chronic illness and we really need to find that . So I have that and then I have an emotional support system . That's really great , and one of those is a community where we share about what's going on in our lives and get to be really seen and heard , and that's been very healing for me . So I feel well supported . I have good friends and people who are rooting for me . You know whether or not I get better it's not about that anymore . It's just they want to see me thrive and be happy , and I think that's what we're all here to do .

Jen 38:22

Yeah , thank you , that's incredible . Well , I have to thank you for coming and apologize . I don't know what happened with the glitch there , but I'll try to stitch it together and we'll make it work . But thank you for for interesting me and this community with your story .

Suzy 38:43

It has been my honor and pleasure , Jen . Thank you .

Jen 38:46

Is there anything that we've left out that you want to make sure we get in here ?

Suzy 38:55

I think , to let your listeners know there's so much to be hopeful for . Don't lose sight of that . Yes , you know you've been diagnosed with a chronic illness . Yes , you're struggling and in need support , but there's so much more to you than your illness . Yeah , we all have passions and interests that light us up , and the less focus you can put on your illness in your day , you know , do what you need to take care of your body , but also really build in time for your passions and your interests , because that's what's actually going to give you energy and purpose and a real desire to go on to live , to live your best life , and that's how you contribute as well . So , yeah , to not lose hope . You have so much to live for and there's there's support available . Talk about your struggle to . That's really important . Make sure you get the listening that you deserve . We all deserve to be listened to and validated for where we're at . And and then , yeah , just focus on living . There's , there's lots , there's lots you have to contribute . So that's most definitely .

Jen 40:25

Well , thank you again and , yeah , I cannot wait for your episode to come out . I'll look it up , but I think it's in October and so , yeah , all right , listeners , thank you for joining us . Get to know Susie . She's incredible . It's been such a privilege . So until next time , don't forget your spoon .