Feeling angry is an inherent part of living with SMA

Those of us with disabilities face countless infuriating situations

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by Kevin Schaefer |

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A few weeks ago, my co-workers and I had a candid discussion about the things that tick us off. I work with a large team of patient and caregiver columnists from this site’s parent company, and we share many similar experiences and mindsets. Our monthly community calls over Zoom are closer to group therapy sessions, and we’re open when it comes to sharing our struggles.

During this particular meeting, we weren’t venting about everyday nuisances or pet peeves. Rather, as people living in the world of rare diseases and disabilities, we were talking about how we process anger after one of our columnists brought up the topic. Both people living with these conditions and caregivers shared perspectives on how and when anger is appropriate, and why putting on a happy face all the time is one of the worst things we can do.

When it comes to living with SMA, there are numerous catalysts for getting angry. Sometimes it’s the physical manifestations of my disability that frustrate me. I get angry that I can’t lift my arms or reposition myself, have pain and fatigue, and struggle with simple tasks like turning the pages of a book.

Yet the more infuriating components are the external obstacles that every disabled person deals with. It’s maddening that we have to fight for doctors to take us seriously, that insurance companies see us as dollar signs, and that we face income restrictions to maintain essential medical services. All of these factors often make me feel burdensome, which in turn exacerbates my level of anger.

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Recognizing that anger can be healthy

I have plenty of reasons to get angry. The conversation with my co-workers made me think about how I can recognize my anger — and not as something inherently negative. It’s something we all deal with, and we should express it healthily.

An article in Psychology Today states that suppressing one’s anger is just as unhealthy as lashing out uncontrollably. My colleague Brianna Albers also wrote a wonderful column about how anger and fear are intrinsically linked to life with SMA.

As someone with a reputation for being a peacemaker and laid-back, I’m not well known for showing my anger. Even in situations where I feel my frustration levels peak, I still display a more mellow disposition.

I’m reminded of one of my favorite fictional characters, Uncle Iroh, from the animated series “Avatar: The Last Airbender.” A mentor to his troubled nephew, Zuko, Iroh can come across as a lighthearted elder. He’s someone who can seemingly mend conflicts with warm conversation and a cup of tea. Yet, as the story progresses, viewers learn about the tragedies and losses he’s experienced. Despite his usual demeanor, he can embrace his warrior side when he has to fight and display rage.

For people like Iroh and me, humor and lightheartedness are powerful coping mechanisms. Though I’m not easily susceptible to displaying anger, I’m learning that this emotion is a natural part of me.

I’m angry that my friends and I are constantly fighting an oppressive system. I’m angry when people carelessly make ableist comments. I’m angry that my insurance company makes me and my healthcare team constantly justify my need for physical therapy. The list goes on.

I don’t plan on injecting myself with gamma radiation and transforming into the Incredible Hulk anytime soon, but I’m reassuring myself that I don’t have to be calm all the time. Addressing the anger within me and how it connects to SMA isn’t just necessary, it’s liberating.

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.


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