Talking about chronic illness

Don’t talk about it. That is an unwritten rule about chronic illness that I have trouble dealing with. If I bring up my chronic illness, I make other people uncomfortable. If I don’t talk about it, I make myself uncomfortable. Sometimes I want to give voice to my concerns and struggles. Only, I learned a long time ago that no one wants to hear it. To keep peace, I keep quiet.

Talking about chronic illness makes some people feel uncomfortable. I have one of those scary neuromuscular nightmare diseases. It’s the kind of thing that almost never happens to people, the kind of disease that people fear. No one wants to think about becoming debilitated. We want to be independent. Even a toddler wants to do things for herself. Losing independence is frightening. I understand why my illness scares people. I understand why talking about it makes people feel vulnerable and frightened. At the same time, THIS is not imaginary for me. THIS is the most real thing in my life. It’s here in my face, 24 hours a day without a moment off. And I can’t talk about it.

I understand why able bodied people don’t want to hear about disability. If a disabling disease can knock you over, that means it can knock me over, and… and I don’t want to think about that. So, don’t talk about it. As if by keeping silent I can pretend THIS isn’t real. Except for the weakness in my arms and fingers. The insulin pump in my pocket beeping. I have medical devices and medicines that keep me alive but never make me well. Sometimes I wish I could just think myself well. Mind over matter, believe you will be better and presto! Instant health in a minute. Unfortunately, reality doesn’t work that way.

I took a few weeks off from my blog because I got depressed. Depression and chronic illness go together. If I didn’t get upset about perpetual illness, I wouldn’t be human. Because I am human, I am able to conceptualize what life would be like without a chronic illness, only I am unable to have that life. Everywhere I go, I can see other people who don’t struggle with their health. I vividly remember what life was like before I got sick, and sometimes I miss that life so much it aches. I have become old before my time, aware that the sand in the hourglass is falling faster for me than other people. Most days this makes me more aware of how precious life is. Other days, I just get sad inside. When I feel sad inside, I back away and pause to regroup.

During my blog break I took some time to breathe and center myself. I don’t have health. That doesn’t mean I cannot be well. Wellness has more to do with my coping abilities than physical health. Focusing on what helps me cope—reading, listening to music, playing video games, writing, spending time alone in nature—doing these things help me rebound. Talking about chronic illness helps me cope. I need to know that I’m not alone. I need to know that there are other people who wake up, look in the mirror and wonder, “What the hell happened?” I need to know that sadness is normal and makes sense sometimes. I need to know that it is OK to not be OK.


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