I wrote this piece last year and shared it a year ago today on my Patreon. Part of the reason I’m sharing it here now is to update previous posts so when I (possibly temporarily) close my Patreon the links won’t be broken. Instead of Patreon, I will be using Ko-Fi for anyone who wishes to support me financially. (https://ko-fi.com/torilynn)
The concept I wrote about here is not unique to me, but something experienced by many disabled/chronically ill people in their own lives. The concept is known as inspiration exploitation (formerly inspiration porn) and toxic positivity. I hope to write about both more candidly in the future, but for now this is what I have:
“You’re such an inspiration,” they say, and they mean well most of the time.
I smile awkwardly and keep my head down. Inspirations don’t fight back.
“Your life is so hard, but you are smiling, your smile is so pretty!” I bite my tongue. I can’t cry here.
“Wow, you really give everyone no excuses!” They mean it as a compliment, but I shouldn’t be here. I feel so dizzy from the pain.
I don’t want my life to be used as an excuse to be cruel and uncompassionate to others.
I need excuses, we all do sometimes. Not all excuses are invalid. I don’t want to be an inspiration, I just want to be human.
“You’re such an inspiration,” they say. “I could never go through what you do.” I grit my teeth because I didn’t want to go through this either.
“You don’t look sick!” They smile, thinking this will make me feel better. I work so hard not to look sick so people don’t feel uncomfortable around me.
“You look better today!” They mean well, but I don’t feel better. Maybe if I looked worse my doctors would listen to me. I don’t want to look better, I want to wake up and not feel this pain.
“You’re such an inspiration!” They say, putting me on a pedestal with no escape. How can I climb down in their minds, show them I am no hero? I’m just a human with a broken body. I want to be seen for who I am.
“You’re so strong, I don’t know how you do it!” They smile, feeling like they validated me. I smile too because I don’t want them to feel as uncomfortable as me.
I don’t know how I do it either, but I wasn’t aware there was a choice. “You’re such an inspiration,” they share again and again.
They mean to be kind, they think that it is but I have knots in my stomach. If you only see me as an inspiration, you cannot see me.
You cannot see my bad days when I can’t get out of bed. You cannot see me when the pain is so bad all I can do is cry.
You don’t see me when I can’t leave the house for weeks because I am so sick. If you just see me as an inspiration, you don’t see me at all.
I don’t want to be an inspiration, I just want a friend.
Your life is valuable and your value does not depend on your health.
I played with the title of this for a long time before I actually started writing it. I’m still not very happy with it but I’ve realized I’m using that as an excuse so I don’t actually have to write the content of this post.
I don’t have to write this, truthfully, but I feel like I need to. I’ve never really acknowledged this anniversary of when my entire life changed. Frankly, I couldn’t narrow down the date until I looked up my old medical records. It’s been haunting me a lot this year, so I’m giving in and writing it.
I’ve talked about the specific losses that came with this in other posts, but today I wanted to talk about another side of things.
(A little informational thing: I did have chronic health problems before this life changing moment, but they were mostly undiagnosed, I had found temporary work-arounds for them without realizing it, and had not often flared to the point I couldn’t hide from them. This post in particular is about my RA, but it is not my only chronic illness.)
Four years ago this week (May 2016) I was playing basketball with some friends. I was relatively healthy (that I was aware of, the underlying stuff and my mental health are other stories), I was energetic, almost everything was accessible to me, I was so naive. Life still had its challenges, but my physical health wasn’t a noticeable one. In fact I was already going through a lot before this life changing event happened. For the first time in my life I was actually going to therapy. Mind you, I’ve needed therapy a long time but the journey that actually got me there is a different story entirely.
For now, just know I was going through a rough time. Not unlike now, I had moved in January and by May I was still trying to establish new relationships. This triggered a lot of emotions I had no idea how to manage, so with some help and a push from people who cared about me, I started going to therapy. Now that I think about it, perhaps the similarities to this year and that year are the reason I needed to write about it now.
At some point the next day, I noticed a sharp pain and swelling in my pointer fingers. It was so small at first, I was convinced I had either sprained or broken both fingers the previous day.
I was lucky enough to have a nurse practitioner friend (Diane Bite) who immediately recognized my symptoms as rheumatoid arthritis. If I had been in another place, I don’t believe I would’ve been diagnosed so quickly or even sought help. I am so grateful for you, Diane! Within that summer my diagnosis was confirmed with blood tests and by a rheumatologist and I started treatment.
My timeline is a little fuzzy for many reasons, but sometime between the initial diagnosis and seeing a rheumatologist I started having really bad days. The pain and swelling wasn’t confined to my fingers, but quickly moved to different joints. For almost a whole week my knees swelled up like giant red balloons and I could barely walk. I almost stopped eating entirely because my hands hurt too much to cook or even walk around a grocery store. RA isn’t like your typical OA (Osteoarthritis). It doesn’t stay in one place, it doesn’t even have a similar cause. I’ve written about it before so I won’t go into details here, but RA is an autoimmune disease, not just arthritis.
This hurts so much to write because I remember how alone I felt in those moments. I still feel alone sometimes. It’s hard to fight the feeling that “the world is against me” when even your own body is attacking itself.
I remember being in so much denial. I had always viewed illnesses as weaknesses; my internal ableism was off the charts. I constantly pushed myself into flares, I was so angry at my body for failing me, I cried a lot, I tried to maintain my old schedule (which I quickly learned was impossible). I felt broken, and though I hadn’t actively practiced self harm in years, I was subconsciously punishing my body for letting me down.
During the day my friends tried to help me, there are a handful of photos of me being pushed around on a longboard by friends because I couldn’t walk. I really needed a REAL mobility aid back then, but I didn’t view myself as disabled (despite having a disability and being unable to walk without assistance). I just viewed myself as weak, not deserving of help.
The first year was particularly bad. I quit therapy (likely when I needed it the most) and tried to maintain a good front to hide the pain. I thought it was a sort of strength to be in pain and not take pain medicine. (It’s not) The pain levels and fatigue aren’t that much better now, but I’ve learned my limits, I have a set medicine routine (although it still needs tweaking), I have mobility devices, I’ve learned to say no. But that first year, I didn’t have any of that. I had a bad allergic reaction to the medication I was put on and it took months to subside, my insurance suddenly stopped covering me with no warning, I didn’t know I could just ask for mobility devices (you can), I thought it was something I just had to tough out (I didn’t).
Within that first year, I also got married, got let go from two jobs, tried and failed many times to get hired at traditional jobs, lost 40 pounds I couldn’t afford to lose, and finally started working from home as an online teacher (which I still love). Wow, I didn’t realize that was all the same year till now.
The pain was terrible, the fatigue was even worse, the brain fog was scary, but the worst part was feeling alone, isolated, and judged. Sure, there were people who judged me (both strangers and people I expected better from), but no one judged me as harshly as I did.
The first genuine mobility device I ever used was a wheelchair at the airport. The night before he proposed, my (now husband) boyfriend and I were flying red-eye back to North Carolina and I was having trouble making it to our gate. I had been dealing with this for a few months, but I was still having trouble accepting my limitations. He saw an airport wheelchair abandoned nearby and helped me settle in it. At first I was embarrassed, I had a very limited understanding of wheelchairs and thought they were only for people who can’t walk at all (they’re not). After some reassurance and goofing around from Johnny, I was grateful.
I’d love to say that after that I got some mobility aids and accepted being disabled, but that’s simply not the case. It took time and support. Somewhere along the way I found support groups specific to my condition on facebook, later I discovered the disabled/Spoonie communities on other social media platforms. Even though the people in my life tried to help me, there was nothing like finding a group of people going through the same things.
I didn’t start using a cane until 2018. My husband actually just found my first cane where someone had thrown it away and we cleaned it up. It was freeing. For the first time in years I could actually walk around without stopping every two minutes.
I don’t remember the first time I used the word disabled to describe myself. I remember some friends encouraging me to try and apply for disability sometime between 2018-2019, but it took awhile after that conversation to actually accept that I am disabled. It took a long time to realize that disabled isn’t a dirty word, it doesn’t mean I’m less of a person, it doesn’t mean I have failed.
This isn’t a story of me over-coming a disability. I am definitely still disabled. This is a story of support, love, acceptance, and pain.
In learning to accept my limits, I have learned to better accommodate the limits of others. I have learned more about myself in the past four years than I did in the twenty prior to them. I have learned to be kind. I have learned the value of support, of standing up for myself, of saying no, of resting when I need it, of demanding accommodation and accessibility, and of refusing to be alone.
If you’ve made it this far, thanks for sticking around. My inbox is always open if you are also grappling with anything I talked about here. However, it is not open for unsolicited advice or MLM sales.
I haven’t spoken publicly about this often because who wants to hear about more at home workouts? But on a serious note, also because it’s a painful topic for me.
I had to rewrite this several times because I found myself adding disclaimers out of fear of people’s perceptions of me.
When I first got sick, I thought I could “exercise myself healthy again” and it only made me sicker, so I avoided it until I could form a healthy relationship between working out and being disabled. Last year with the guidance of my rheumatologist and encouragement from my family, I started practicing yoga. It was freeing, being able to do something again. Then I had complications with my endometriosis and was told to stop all exercise again pre and post-surgery.
Fast forward to this spring, I have the green light (temporarily) to exercise again and I’ve been practicing modified yoga since mid-March. It’s freeing, it’s scary, It’s unnerving to know if I push myself too far I won’t be able to do anything for days. Even the little workouts I do take so much energy that I have to rest afterwards before I can do anything else. But it’s nice to have this right now. It’s nice to work out to help my body instead of trying with no avail to get it back to how it was four years ago.
I know I’ll have to stop again soon, but that doesn’t take away the feeling of getting a little strength back for now. 🌷🧘🏻♀️ Enjoy the little things and don’t let the times you can’t do them take away from when you can. Be kind to yourself. 💕
Also remember there are more posts over on my Patreon that won’t be shared here so feel free to check it out.
I’m still getting used to the multi-platform thing but the actual post is public on my Patreon. This is just a notification/reminder of sorts.
It’s called “An Inspiration” and I talk about how it feels to be disabled “inspiration porn” (if you’re not sure what that is a quick google search should help). It was an incredibly difficult thing to write because I don’t know how people will react to it.
Inspiration: if you are healthy it’s very possible you have a 100% positive relationship with inspiration, especially being told that you are one. It might feel exciting or flattering. The same often does not apply to those of us who are chronically ill and/or disabled. My worth is not how inspiring my life is to other people.
I care a whole lot more about being a friend and an advocate than an inspiration.
So head over to my Patreon (Patreon.com/Tortles) and check it out.
The Pages of the Story 