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.

Lead photo source: Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Chronic Pain

To the Woman Who Will Be Changed Forever by Your Chronic Pain Diagnosis

Dear Jessica, I know right now you are in complete and total shock and truly do not believe you can go on. You fell off your bicycle (that amazing pink cruiser you got right before seventh grade) and ended up having brain surgery that would alter your life forever. Cognitively you are fine, but you [...]

12 People Describe What It's Like to Live With Chronic Pain

While experiencing physical pain from time to time is part of life, chronic pain is something entirely different. With chronic pain, pain signals keep firing in the nervous system for weeks, months, even years, instead of stopping eventually like with acute pain, according to the National Institute of Neurological Disorders and Stroke. Because a large [...]

17 Ridiculous Things I’ve Said Due to ‘Brain Fog’

For as long as I’ve been living the spoonie life (16 years), I’ve had these weird little bouts of fogginess. The combination of chronic pain, fatigue and lack of sleep take a huge toll on the brain, and sometimes it’s really difficult to say words, let alone form sentences. When it comes to brain fog, [...]

To the People Who Think I'm Not in Pain Because I'm Smiling

First, I had a career. I had hobbies, one of which was exercising and taking all kinds of classes like kickboxing, yoga and Pilates. I also had a husband who could not handle my recovery, so he moved on. I am a mother of a beautiful 25-year-old daughter. I have a Pomeranian that needs to be fed, walked and [...]