Adults with SMA need and deserve better support systems

Second in a series.

It was a dreary fall afternoon when I told my dad: “By the way, you should know I’m depressed.”

I’d been feeling down for a couple of days, to the point where I was starting to lose interest in things that usually bring me joy — a classic symptom of depression. I hadn’t said anything, hoping the sadness would ebb with time, but I woke with my head full of fog and a nagging feeling that something was wrong. Instead of burying my head in the sand, though, I decided to meet the problem head on, starting with identifying the root cause of my depression.

My dad and I spent the next couple minutes compiling a list of all the reasons I could be depressed. Most of them were your run-of-the-mill triggers, like hormones and writer’s block, but I couldn’t shake the feeling that there was more to the story.

Then I realized what was wrong.

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The week before, I’d talked with a researcher about transitioning from pediatric care to adult care as someone with a disability. I told her about my support system growing up, from healthcare professionals to caregivers. I was extremely fortunate, and I told her as much.

After a while, she asked about my support system as an adult. Naturally, things had changed — I was no longer a child, and thus no longer needed the hands-on support I’d been fortunate enough to receive over the years. But compared with my care team of 20 years ago, my current care team was … lackluster, to say the least.

My parents are, and have always been, the foundation of my support system. They handle everything from daily caregiving to premiums and life insurance policies, for which I am stupidly grateful. But when I was young, they had a whole team behind them. Doctors, case managers, social workers — the bones of my support system had support systems of their own. But the older I get, the more I see them having to go it alone.

Shouting into the void

Take, for example, caregiving. I’ve been searching for a caregiver for years with no luck. It’s next to impossible to find people these days, which means most of the responsibility falls on their shoulders. If something happened to them, I would be screwed. Instead of living independently, I would probably be sent to an institution of some sort, likely against my will.

My doctors have little to no knowledge of SMA. My health is stable, so I have the energy and emotional resources to advocate for myself. But if I took a turn for the worse? If I found myself in intensive care without my parents? Screwed again.

I don’t have anyone fighting for me at the county or state level. I have myself, my parents, and a few friends who are knowledgeable about SMA and what it means for my care. That’s it. As a kid, I never wanted for support. Now, as an adult, I feel like I’m begging on hands and knees for a sliver of the support I received as a child.

It’s exhausting. It causes me so much anxiety. I try every day to advocate for myself, to be my own support system, but at the end of the day, I only have so much energy. Caring for someone with a rare disease is a full-time job. And it is not something that can be feasibly handled by one or two people. It quite literally takes a village.

I was depressed because I was comparing my childhood with my adult life. Many adults with SMA seem to have it figured out. They have spouses, families, careers, and a robust care team. Compared with them, I feel like I have precious little; I feel like a failure. But for every person with a spouse, family, career, or robust care team, there’s someone like me — shouting into the void, desperate for support.

We deserve to have comprehensive care and to know we’ll be taken care of, no matter what happens, from birth to death. We shouldn’t have to go it alone, and I won’t stop fighting until we no longer have to.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.