Disability and Relationships

A recent discussion thread in an online disability community has made me think about the relationship between disability and the people around me. 

Living with a degenerative disability like FSHD means you learn painfully about relationships. You learn them through loss, silence, the way people look at you, and the way others look away when your body changes faster than your relationships can keep up.

I've lost a lot of friends and family because of my health. I get it. It’s hard watching someone you care about deteriorate. Some friendships faded quietly. Others snapped under the strain. A few stayed, but the gaps between seeing them grew longer, and in those gaps I changed. When we do meet, I see the sadness in their faces. They try to hide it. I try to ignore it. We both fail a little.

This is true about my brother. We never had the best relationship. After Mum died, it was really only Dad keeping us together, but when Dad died it stopped. Nevertheless, my health has impacted that relationship. He struggled when I first got sick at thirteen and it never really changed from then. Why wouldn’t you when you were told your younger brother might die soon. There’s  more to it though. Over the years, we saw each other less and less, but comments about my health and the progression followed. It was hard for him.

Friends have struggled too. When I first started blogging, people at a blogging event commented that they didn’t realise how disabled I actually was, which led to me writing about my Muscular Dystrophy for the first time. Others have voiced the same when they see me after a long period. One friend, who now lives in Norfolk, said recently that every time he comes back down it’s a shock to see how much I have deteriorated. I saw it that day in his face before he said it. He looked at me, grimaced, and then quickly smiled and acted normally. I see that a lot.

My family is different. Hannah and the teens accept me fully. They see the reality of my health every day, still treat me as me, and help as young carers. Hannah dated me having read this blog. She prepared her two, although seeing is believing. At the start, they naturally stared and watched, and apart from Midge thinking I was having a “seizure” (I was sitting up in bed), they adapted. Hannah knew my health fully and still married me six years later anyway. It upsets her, but my health isn’t me. 

Both boys struggled when they were little and strangers stared, but that came from a protective love stance. James sometimes struggles with my deterioration now, but mostly when a bigger one happens, but that’s understandable. Otherwise, he doesn't change his behavior. Midge struggled inviting friends over when she was younger in case they made fun of her or me, but doesn’t care anymore. All four have adjusted well. They always do. Just as I change, they change too. 

My church friends are a mix. The close ones love me as I am. I’m just me. The older generation carry pity in their eyes, words, and actions. I dislike it, but I smile through it. They are of a generation that didn’t embrace disability like we do now. Church culture has also changed. More disabled people attend and feel welcome, which I’m grateful for.

Strangers are predictable. They stare, judge, make ablest jokes believing they’re  being funny, and pull faces that tell you exactly what they are thinking. I used to care. I don’t now. The older I get, the less it bothers me. I have become accustomed. I fight when I have to. I shine a light when it’s needed. What others think is not at the top of my thoughts.

Online friends add another layer. Take World FSHD Day. People on Facebook celebrated my daughter passing her driving test, a date night with my wife, and anything that fits into a happy world. They don’t engage with the FSHD posts. Disability makes people uncomfortable. They want the good, happy posts. They really don’t want a reality check.

I’m happy with my life, but my world is affected by my disability. It shapes my days, nights, choices, independence, pain, and future. It shapes how people respond or avoid me. I’m still me. The person who partially cooks, writes, teaches, ministers, laughs, annoys, reflects, and tries. I’m still the person who parents, loves, advocates, carries on, gets up every morning, and chooses to live a life that is mine, not defined by what my body cannot do. Even if its slightly lonely at times, I’m still here, present, and participating. Living a life that is worth writing about.