Chronic Illness: What I’ve learned, un-learned, and am still learning

Visually impaired like me? I’ve got you- here’s the audio recording of this article:

It’s been such a long time, but I’m back! I really miss blogging. I think it’s time I made it a habit again. A lot has happened since I was last posting actively here. I’ll try my best to keep this as short and entertaining as possible, but it’s bound to be a long one so please bear with me!

Living with a chronic health condition / invisible disability comes with all kinds of fun life lessons. Discovering your unique individual limitations, learning how to express those limitations and set boundaries with others, and just learning how to cope with the existence of those limitations in general can be a really long, arduous, exhausting process that never really seems to end, or at least I personally haven’t reached that level of chronic illness nirvana yet if such enlightenment does exist.

I’ll spare you the cliche of calling this a journey, and you won’t find any inspiration porn here. It’s just a fact of life with limitations. You learn to adapt, and that learning process can be messy. Often times, folks with invisible illnesses / disabilities learn those lessons alone due to the isolating nature of having a condition that can’t always be seen by the naked eye. It’s common to gaslight yourself into thinking that what you’re going through is just “normal” stuff that everyone experiences and suffers through silently. It took me a ridiculously long time to realize that the real physical symptoms I was experiencing from my conditions were just that, rather than some unfortunate personality flaw I had been led to believe I had. Coming to that realization was my first lesson, and I haven’t stopped learning since.

When I was first learning about my condition, I was doing so alone. At the time, there were very few people on social media actually talking about my condition, so I relied heavily on dense, complicated medical journals and articles explaining my rare disease to learn about it. I would occasionally leave a comment on a YouTube vlog commiserating with my fellow Panhypopituitarism patients, but there wasn’t a strong community there yet, so I still felt pretty isolated. Creating my own vlogs and videos helped me cope and connected me with others on the same mission of discovery. An educational video I made on my condition was one of the first on YouTube, and STILL comes up as one of the first results when you search for Panhypopituitarism there. The resolution and audio quality are AWFUL, but here it is if you’re curious:

After a while, I discovered communities of folks with chronic illnesses on Facebook. That was a massive breakthrough for me. Even though we all had totally different diagnoses, a lot of the social stigmas, misjudgments, and blatant discrimination we experienced were the same. I started to really understand that it’s okay to accept the reality of my limitations, rather than destructively hold myself to the same expectations as my “normally healthy” peers. My fellow “spoonies” connected me with resources and shared what they had learned from their own experiences. I learned to identify the biases drilled into my head by an ableist society and dismantle them. Over the years, I’ve become keener to identify those biases, implicit and otherwise. I’m still in the process of reprogramming my brain to stop defaulting to ableist bullshit, like the need to always be productive or turn my passions into side-hustles, which is something people always seem to force on folks who are on disability for some reason. I mean, COME ON. If I could handle a job, I would be at work. Starting a small business is a full-time job. So, no, I’m not going to be churning out projects to build up stock and sell, sell, sell! If I do wind up making a buck or two off selling some stuff I’ve made here and there, sweet! Just don’t expect me to be making bank on Etsy. Let me enjoy my hobbies when I have the energy to do them and take your judgement elsewhere (I say to my own inner-voice).

It’s that pressure to always be productive that led me to overdo things, crash, and repeat over the years. I am proud of the work I did for the National Organization for Rare Disorders as Community Engagement Liaison and briefly State Ambassador for Indiana, and I have nothing but kind things to say about that organization, but it turned out to be more than I could really handle.

Thankfully, the team at NORD was so understanding when I announced that I would not be renewing my volunteer contract with them when the two years I had committed to were up. They didn’t make me feel guilty, and even praised me for putting my health first. I’m tearing up right now typing this, sipping from my NORD coffee cup, and looking fondly up at the acknowledgement plaque they awarded me with, which I still proudly display on my zebra shelf above my desk. I’ll always look back on the work I did for them fondly, and I am proud of what I was able to accomplish.

The decision to resign was difficult, mostly because I feared judgement from people in my life who might see this as giving up. I have not given up on those values of uplifting and supporting the rare disease and chronic illness communities. I still do a lot to raise awareness and offer support through occasional charity events on my Twitch channel, and the weekly peer support group I host in VR. So no, I have most certainly not given up, but I HAVE discovered and accepted my limitations, and I am getting better at protecting my own well-being while still supporting the causes I am so passionate about.

As always, managing my health IS my full-time job. That’s my top priority above all else. I only get this one body, and I intend to make it last as long as I can. I want to feel as good as I can and be as healthy as possible despite the challenges offered by my complex and rare congenital disorder. I’ve come a long way in terms of understanding my own body, even in recent years. We’ve recently uncovered some nutritional deficiencies I didn’t realize I had, which may have been contributing to some of my debilitating symptoms. My care team and I are working to address those issues now, but it might take some time before we really get a handle on them. I’m looking forward to feeling better but trying not to get my hopes up too much. I know that fixing my nutritional deficiencies won’t eliminate all the weakness and fatigue I struggle with since my pituitary disorder as well as the medications I take to treat it are known to cause the same symptoms, but addressing these nutritional deficiencies I have will make them less intense, or at least that’s my hope. I’ve also been successful in improving my heart health with lifestyle changes, and I’m continuing to improve on that as well.

Right now, my daily life consists of making sure I’m taking my meds on time, getting enough sleep, eating right, and exercising when I’m able to, as well as keeping up with appointments with my doctors and moderating the support group chats that I run. It doesn’t seem like a lot, but believe it or not it does keep me busy. I am grateful that I have financial support from SSI, food stamps (SNAP), and Medicaid. Without those, I would not be able to prioritize my health and I would be literally working myself to death just trying to make ends meet. Being able to focus on making the best out of my health situation is something I do not take for granted. I’m also grateful for the friends I’ve made along the way who are also in similar situations. Being able to connect with them and share our struggles makes it less overwhelming and easier to cope with.

I think the best lesson I’ve learned so far is allowing myself to fully enjoy the good days I do have on occasion. I still catch myself feeling guilty for that sometimes, but I’m getting better about not doing that to myself. I deserve happiness as much as anyone else.

I deserve not only to survive, but to thrive.

There is so much I want to catch you all up on, but I think I’ll save that for future articles. For now, I’m just going to say that I’m happy to be getting back to blogging! Keep an eye out for more posts from me!

I’m not active on social media anymore. I occasionally post art projects to Instagram, but that’s about it. I haven’t touched Twitter since it got all musky, and Facebook is a manipulative anxiety generator, so I’m not active there anymore either. If you need to get in touch with me, I’ve got a contact page here for that, or we can just chat in the comments below!

Until next time, take care, and I’m sending spoons your way!

Photo by Nadezhda Moryak:
Photo by Nadezhda Moryak

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