Coming out of the chronic illness closet

Them: “Hey you want to go on  (fill in the blank here) trip with us?

Me: “Uh, I don’t think I can.”

Them: ” Oh come on, you know you want to.”

Me thinking: Sure I want to but there is no way I can do that physically it would just be way to much. What to I say? Do I say I can’t because it will be too exhausting? Then they will probably tell me  I should just go to bed early and the problem will be solved. How do I convince them to let it go but still include me next time?

This is a not infrequent scenario on my life. When I meet new people I never know when to come out of the chronic illness closet. At the beginning of the relationship it feels awkward to just announce it, but as a relationship heads toward friendship I can never find the right moment. Discussing illness is difficult and as a private person I am always trying to find the right balance. This is not made easier by the fact that on the outside I look completely normal. I am often in unbearable pain but I am great at putting on my game face and hiding it. Someone who doesn’t spend a lot of time with me might think I live a normal life. Even someone who spends a lot of time with me but always in a place where I have my game face on would not be able to see my disability. On the surface I look like a stay at home mom who involves herself at church and school to keep herself busy. That is true but it is not the whole story.

As my relationships develop at some point people start to notice that I tend to flake out a lot and that I’m hesitant to make commitments. I can look unreliable which is actually the complete opposite of my personality. I hate looking like a flake so I do want to explain what is going on. At the same time I know that few people can really comprehend why I flake out so much which makes me wonder if there is any point in making myself vulnerable.

I do not know the magic point in a relationship that chronic health problems should be revealed. What I do know is that I need to give my friends a chance. I need to give them a chance to help me and to try to understand. It’s hard opening myself up to their judgement. It’s embarrassing and difficult to explain and humiliating to share something so personal, but it needs to be done in order to have true friendship. Will I regret it? Possibly, but chronic illness is a core part of me now and I can’t heal physically or emotionally without sharing who I am.

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8 thoughts on “Coming out of the chronic illness closet

  1. Good luck in deciding when to tell your friends. I think it's important to let our friends know what is going on, and why we seem to flake out so much, and then we just need to hope they take the time to understand. If it makes you feel any better, I am the biggest flake in the family, and have learned to never commit to anything, most of the time. Do people get mad at me? Probably. Do I care? Not so much anymore. I have to put my oxygen mask on first, so I can continue taking care of my family. MY family has to come first, then my friends. When I suffer, my family suffers, which hardly seems fair.

  2. I say that if you are even putting yourself out there and trying to make new friends that's a pretty big deal. It is a big deal to open up about your illness to new people. There's so much negativity about certain illnesses that it can be difficult to be honest and not worry that they will react in a bad way.

  3. This is such a great post! What I've tried to be is become very open about my illness. In the past I did lose a lot of friends because I wasn't able to keep up like I used to. Now my close friends know that I might bail out last minute or change plans because I'm not feeling well and they accept it. I think the biggest thing that I have been doing differently is being very honest about how fibromyalgia feels. I send them articles that I've written and posts about what I go through. Those friends that are worth having stick by me and the others fade away but that's ok. Best of luck to you on finding your sweet spot with your friends!

  4. I see a counselor that has fibro/lupus herself, it REALLY helps. Nobody can understand and friends will always want to help, sometimes they say the funniest things like we can get rid of this somehow, but we can get it under control for LONG periods of time, it is just never giving up on finding your sweet spot. I found a slideshow of Fibromyalgia and I sent it to "my people" and I added I love you all, it is your choice to take me as I am or leave the friendship, then let it go. People (true friends and family) will WANT to do ANYTHING they can to help BUT we always have so much guilt it holds us back. We have to learn to be what we are, believe for better days and let that be that, no guilt. The right meds, the right food, the right support and good friends are KEY 🙂 Best wishes to you 🙂

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