Learning to Live with a Chronic Disability

Hark, a personal post appears! Not such a rare thing, on this blog. Yet, this post comes inspired from dealing with a recent flare up with my chronic disability last week. As usual with me, it’s left me with a lot of Feelings™, so here’s my attempt to process it. Because learning to live with a chronic disability has been just as challenging as learning I have one.

So, let’s dive in.

Context: The Diagnosis

For my entire life, I’ve dealt with lower back pain. It didn’t become debilitating until June 2019, when, after moving, I strained my back so badly that I started having muscle spasms that left me without the ability to walk. I simply couldn’t straighten my spine enough to do so. Currently not without pain. Two weeks of numerous doctor’s visits, chiropractic sessions, ice pads and pain meds later, I could finally walk again.

It would take two more major flare ups (the last one happening last September, which put me in the ER), thousands of dollars and too many appointments to finally have a sembelance of an answer.

Spondylosis, caused by degenerative disc disease.

Basically, there are multiple discs in my lower back that are dissolving, so sometimes, when I bend over, my nerves get trapped, causing intense pain, including muscle spasms and leg weakness. There is no exact cause nor a cure, as it’s also just a broad catch-all term. To some, it’s not even a real disease or diganosis.

For me, however? The pain and learning to live with this chronic disability is very, very real.

Things I’ve Learned

Even if the diagnosis itself is debated, I’ve had to learn to change the way I live. I’m no longer allowed to run or lift weights. I can’t stand for long periods of time. Learning to squat instead of bending forward helps avoid a flare up. Practicing recognition of when my back feels tight and not pushing it is something ongoing I’m trying to do. Daily stretching is part of my routine.

These types of things all fall into “what you need to do to survive with my chronic illness” category. Yet, there are other lessons I wasn’t prepared for, but had to learn.

• “Invisible” Disabilities are Hard: If you saw me on the street, you’d have no idea I have a chronic disability, let alone a physical one. On days when it’s challenging, there are often things others cannot see, but what I can feel. And that’s hard, because it makes me feel like I constantly have to prove this to be true, my reality. Which ties into:
• People Won’t Believe You: I was formally diagnosed when I was 28. Literally the first time I saw any extended family, this was met with doubt and criticism. “You’re too young to have spine problems,” was my aunt’s first response, before immediately going in to give me advice on stretches I didn’t need. I also had approved stretches I did with my doctor. Others blame it on my weight, like the fact that I’m fat means that I brought this upon myself. Some don’t believe me at all. “You don’t look disabled.”
• You Feel the Need to Prove it: All of that ties into my impostor syndrome. My anxiety spikes when I have to call into work because it hurts to move or if I ask to work remote. Do they think I’m faking it? Or if I ask to have a chair or for someone else to lift something. Do they believe I’m in pain or trying to avoid pain? It’s mentally exhausting.

Lessons Still Pending

Yet, on top of all the things I’ve learned, there are plenty of other lessons I still need to learn, to manage my chronic disability. Things like:

• Asking for Help is Hard: I am a very independent person. Asking for help isn’t something I’m used to or enjoy doing, even though it’s healthy to do. When I had a minor flare up last week, I had to ask for help to get my dog walked. And it was so hard to ask, because I felt so guilty that I couldn’t do it. It was my dog. I should be walking her. But, had I pushed myself to do it, my flare up might have lasted longer than a few days. Learning to rest and listen to what my body needs–and rely on others to help–is going to be a long lesson, for me, I think. But a needed one.
• Changing Habits and Lifestyle to a New One: Though stretching is now part of my daily life, I still struggle with some aspects of my back c. Like the fact that, on bad days, a task that might take me 30 minutes to do normally could take a few hours, because I need breaks. Or accepting that sometimes, it’s going to flare up and there is nothing I can do about it. Doesn’t matter what plans I made or what I want to be doing or how well I’m managing it. It can still flare up, I can still spasm and I can still lose mobility for a few weeks. That’s hard to swallow.
• How to Manage Guilt and Gaslighting: Like I mentioned above, I get push back, sometimes. And doubt. Both feed into my own guilt and sometimes, it’s enough to make me believe the lies, despite living the reality. I know my body and its pain. I’ve lived it. Yet the guilt of needing others, of letting people down, of not being able to be as independent as I want; it weighs.

In Sum

I’m not sure there is a good way to wrap this up. It does feel good to talk about. To acknowledge that this is something in my life that exists and will, most likely, for the rest of my life. (Unless I do surgery, which is complicated and complex for a number of reasons.) Learning to accept a chronic disability isn’t easy. Neither is learning to live with it. Especially in a society built on producetivist capitalism, where your worth is determined by your ability to work. And supportive healthcare doesn’t exist for you.

So, thanks for letting me have this space to process and be honest about it! If you’re also dealing with this, I wish you good spoon days, rest and kindness towards yourself. Gods know you’ll have to fight for it from everyone else.

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