When Chronic Illness Makes You Feel Like a ‘Flake’

I hate feeling like a flake. Hate. It.

As I sit here writing this, it is a beautiful Saturday afternoon. The sun is shining, and I am wrapped up in a blanket on my couch watching a movie. To most people, this may sound like a nice, lazy Saturday afternoon. I would even go so far as to guess that most “normal” people may be envious to have a day off like this with no place to go where they can just “Netflix and chill.”

But the thing is, I am not a “normal” person. I live in chronic pain due to lupus and fibromyalgia. At one point in my life, a day like this may have seemed like a heavenly treat, but in the past 15 years since becoming diagnosed, these days have come far more often than I would like. And they are no treat.

The problem is that I was invited to a party today that I have been looking forward to for weeks. At the time, I RSVP-ed I was feeling good and had every intention of going. I was so happy that nothing else was on the family calendar for that day, and I was really looking forward to getting to know some of the people who were attending better.

But then a few days ago, I started what I can only presume is the beginning of a flare. My everyday pain became more intense than the norm, brain fog got a little worse and my tremors became more pronounced. So I can’t say it’s altogether shocking that I’m feeling lousy today. But even after 15 years, I’m still in such denial at times and have the ever-present wish that tomorrow will be better.  And even though I pretty much knew that tomorrow (today) wouldn’t be better due to past experience, I try to not project too far into the future. If I did that, I would never have anything fun in my life planned!

Well, today wasn’t better. In fact it may even be a little worse. So I had to make the decision: do I go or do I send my regrets?

My life, as I know is the case of many other pain warriors’ lives, is a constant list of “pros versus cons” when it comes to decision-making. I feel like with even the smallest of decisions, I’m always teetering on the fine line between pushing myself and exercising self-care.

For example: If I attend, will it make my pain worse? If it does make it worse, will the benefits of attending and socializing with my friends outweigh the effects of the worsened pain? Or if I don’t attend, will it make me resentful that I couldn’t go? And if so, will the resentments develop into emotional pain for me, which may cause me more physical pain?

And that’s pretty much what goes on in my headspace during times like this.  “Mental gymnastics” is what a friend in my local pain group calls it, and I can’t think of a more appropriate term for it. Swinging back and forth, back and forth.

So my ultimate decision today was that I shouldn’t go. That I should stay home and rest and hope today’s resting may equal tomorrow’s lower pain day. I won’t lie, I’m pissed off and a tad resentful that I have to make decisions like this. But no matter how angry I get, it’s not going to change my situation. So I just have to go with my gut instinct, trust it’s the right decision for me and hope I will be invited again next time when, hopefully, I can attend.

Group of woman outdoors

The Mighty is asking the following: What’s one of the hardest things you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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