It’s common knowledge that you don’t just tell someone with depression to “just get over it,” “get out of bed,” or “you can choose not to feel sad, it’s just mind over matter.” So why would you tell someone with Chronic Fatigue Syndrome to do more, double down, and it’s all in their head?
My world is centered around not having a flare up. I’m so set in my ways because if I do have a flare up I’m useless for an indeterminable amount of time. My last flare up was in July and it took me until this past month, 6 months later, to finally feel almost back to normal.
In order to understand how important this is you need to understand what a flare up is. I will do my best to try and illustrate what it’s like.
My last flare up was on a Tuesday after July 4th weekend in 2018. I remember because most of my clients that I train were gone on vacation and I had finished the day early. I had been the most active I had been in over 5 years. I was eating the cleanest that I had in my entire life. My cognitive function and energy were at an all time high. Because I had finished my day early I began to start a workout. I was feeling a little tired and assumed it just had to do with something I had eaten for lunch and that if I were to do some exercise I would feel better. So I got to work. Within minutes I knew that had been a mistake. I had shooting pain that radiated from my spine down in to my legs and feet. I had a pins and needles feeling shooting up my spine and in to my head. My hands started to shake like I had tremors and my body felt so tired and weak that it felt like gravity had doubled and moving my body under that intense amount of weight was almost impossible. I went home early and didn’t make it past the living room. I dropped my backpack and laid down on the ground where I would remain for the next 4 hours before crawling up to the couch. I didn’t eat that night and went to bed. I also could barely speak. The energy required to open my mouth and to actually create words was too much. So I just laid there. Mind racing, but body drained. I did the bare minimum for the rest of the week.
By the following Saturday I was feeling better and thought I could go push myself and repair a flat tire that I had on my bike. So I walked my bike less than a mile to a bike repair station and worked on patching my tire. This was the worst decision I could have made. The physical and probably some mental stress was enough to drag me further down this pit of a flare up. Without finishing I laid down on the ground, shaking from tremors, my heart rate had spiked to 180, and I called for help. Somehow I walked home where I collapsed again. Covered in oil and dirt from the bike repair I tried getting in the shower. My very amazing boyfriend had to help me as I sat on the floor of our shower, unable to lift my arms to wash my hair, unable to stand without support.
This is how it was the next following weeks. I woke every morning with pain down my legs and that feeling of intense gravity. It would take me over an hour after waking up to actually get the energy to get out of bed. Some people stay in bed on their phones or are too tired to get out of bed and that’s not what this was. This was wide awake, but no energy to get my phone or to move or to speak. It’s like your brain is fully functioning but your body is in full paralysis and all you can feel is intense pain. I was nauseous daily, I could barely hold conversations, coaching was exhausting, and I did nothing other than work and sleep. Over time with rest it gets better and I’m sure if you’re reading this and you have some kind of invisible illness you can understand what this was like. If you don’t experience this for yourself though or see someone go through this then you have no way of really understanding this.
I am absolutely terrified of having another flare up. I’m terrified to feel this way again. I’m terrified to have the thoughts that I’d rather be dead than experience this again. I’m fully aware of how this fear makes me very close minded and very rigid about certain aspects of my life. Until I feel comfortable enough that I am in no way at risk for a flare up I will not push myself beyond what I feel is safe. I can push myself enough to grow, but not enough to collapse. This is a skill I’ve worked on for 5 years. A skill I developed while trying to play a division 1 sport with this illness. I have a fairly good understanding of what will cause a flare up at this point and I am not willing to risk that to get in an extra set or do that high intensity workout.
This does not mean that I don’t want to do that extra set though. This does not mean that I don’t wish I could go run sprint repeats. This does not mean that I wouldn’t love to eat pizza and stay up past 9:30 pm. But my desire to do these things does not outweigh the fear I have of relapsing again. It’s hard though. To tell myself not to do more. To tell myself not to eat that. To feel disappointed with the amount I can lift or to lose confidence with the way I feel about my body because I can’t do workouts I want to do. If you challenge someone on something that he or she is already self-conscious about you’re only making him or her feel worse. When people tell me that my illness is all mental it really sucks and there are days that even I question it. “One more set won’t kill you,” “it’s not a big deal to stay up and finish the movie,” “it’s mind over matter, the pain you feel is all in your head.” But then I start getting symptoms again and I’m immediately pulled back in because I can start to feel my body slipping and the memory of how much pain I go through makes me stop dead in my tracks.
So stop telling people to push themselves in this situation. People with real diagnoses and autoimmunities have real conditions that are exacerbated by doing that extra push. Don’t do more damage to an already dysfunctional system. There will be a time hopefully where I can push myself and where other people in my situation can as well and when that day comes I’ll be more than happy to do that extra set, but until then I won’t be doubling down.