An invisible illness

I have an invisible illness. I feel invisible at times. At times I question whether or not I’m actually sick. Sometimes I can’t see my illness and I walk straight into a brick wall of consequences and symptoms because I couldn’t see what was right in front of me. There are so many layers to being sick like this, and I hope that by writing about it, by sharing my story, I hope I can shine a little bit of light on a little bit of darkness.

(Just a warning I’ve been meaning to work on this for a while now, I’m going through a pretty big crash right now that has lasted going on three and a half weeks, and I’m really tired and don’t feel great. But here goes).

I don’t look sick, at least, I don’t think I do? I’ve certainly lost a bit of weight, gotten a lot balder, and aged a little more since all of this started back in the fall of 2019. But we all sort of turned into vampires for a few years there so I won’t hold it against myself too much. And every time I ride my scooter, park in an accessible parking spot, take a break when I need one, miss a family gathering, take the elevator instead of the stairs, or even continue wearing my mask in public, a part of me gets defensive inside. I’m ready for a fight, a disagreement. I’m ready for john q public to challenge or question my level of disability. I kind of want someone to do it; at least a little part of me does. And even though I know that I genuinely need each and every one of those aids and that any excuse to make my life a little easier, is 100% welcome right now, I still feel a little anxiety each time I have one of those thoughts.

And so that’s the first kind of invisible illness. Lots of us deal with it all the time. Most people understand it. It sucks. We need to work on it as a society. We need to be more kind to each other.

The second kind of invisible illness is one of social isolation. A big part of that for me is that I got sick during a global pandemic where we all stayed home for two years anyways. And I also got sick right before we moved to a new town before we had a chance to make any new friends. And so this has been an extremely lonely time for me. I don’t think I’ve ever felt as alone as I feel right now.

What’s really hard, is that my two best friends are currently sleeping in the next room (my wife and my daughter). We were a team during the pandemic, going on adventures, car rides, hikes, camping trips, we did everything together. It was great. And there’s nothing more in this world that I want right now than to resume that life, to go on those adventures. But I’m often too sick to travel, too sick to go outside in the summer, sometimes even too sick to watch a movie with them. One of the hardest parts of this illness is that sometimes I can only stand to be alone. It’s hard to describe, I’ve yet to find a good way to communicate it. But when I’m feeling at my worst, all I can do is curl up into a ball and close my eyes. And so for the past year and a half, I haven’t been the greatest husband, I haven’t been the greatest father. I wish I could do more with them. And maybe one day we will. But for now I hope they both know how much I love them.

I do miss having friends too. As with a lot of people in their early 40’s I too tended to have more acquaintances then friends. As you start a family it’s hard to maintain those friendships that you once had. But I did have a very social job. I was around thousands of people all the time (for those who don’t know I was a festivals and events planner for a local municipality planning large scale events and festivals almost every week throughout the summer). I would see so many people that I knew on a regular basis. And then the pandemic hit, and then I got sick, and now I don’t really see anyone. So that’s been hard. And I know a lot of other people with chronic and severe acute illnesses suffer from similar experiences.

The final element of invisible illness I wanted to touch on, is that sometimes this illness can feel invisible to me too. There are times where I’m lying in bed and I start to feel not so bad, so I get a little ambitious, I get out of bed, start to do something, and then bam, the illness kicks my butt and I’m back in bed. Sometimes I even get to start on a project, only to get halfway through and realize that I overestimated how much energy I had. Or maybe I go on a small adventure only to realize that the drive there was more than I could handle and now we have to come home early without getting to have any fun.

Other times it’s a piece of celery that my daughter decides she didn’t want, and I say to myself “hey I like celery” and then I say to her “here, I’ll eat it”. Only to have my body tell me that celery is actually on this list of foods that my body doesn’t like. A list that my body won’t actually share with me until I consume an item on said list. And then my body very quickly informs me of it’s distaste for said item. Leaving me with pretty severe cramps, nausea, flushing attack, headaches, etc. That can last for a few hours, or in this case a few days.

I think that’s what I hate about this illness the most. It’s so hard to get a beat on what I’m able to do and what I’m not able to do. One day a trip to the grocery store will be a welcome reprieve from my bedroom, a fun little adventure where I get to feel normal for a few minutes. Other times I’ll get 5 minutes into shopping and break out into a sweat and realize I need to get home as quick as I can, dump the groceries on the counter and stumble up to my room and collapse on the bed barely able to breath.

Your body tricks you into thinking you can do something, only to pull the carpet out from under you once you let your guard down for a second.

And because of all three of these circumstances, the assumed anger from strangers, the social isolation, and the inability to read your own body, it can become a very paralyzing illness. You reach a point where you just don’t want to go through that anymore. And that’s left me in a dark spot for the past few weeks. And I’ve felt pretty low.

But I’m not going to give up. I’m not going to stop pushing. I may need to take some breaks, listen to my body. I certainly won’t be who I used to be. But I won’t give up. I know that much. This world is too interesting. There are new adventures to go on, giant crow sculptures to build, houses to finish renovating, movies to watch, songs to listen to, dog videos to watch.

This world can be a cruel, dark, miserable place sometimes. And I certainly don’t have it as bad as soooooo many other people. But this world can also be a fascinating, beautiful, strange, crazy, exciting, hilarious, and just all around lovely world. And so tomorrow is a new day. I’m going to keep searching for that balance, keep trying to understand my body and this illness, and just trying to squeeze as much joy and love out of this life as I can.