There is a lot of reasons why we develop beliefs about our pain. And how we should and shouldn’t behave with it. How we should and shouldn’t talk about it. How we should and shouldn’t talk about it. And when you experience pain young sometimes that happens without much introspection and then you just run on autopilot with these beliefs and thoughts that Do Not work for you at all.
I was reading an article about someone with a similar fibromyalgia story to mine.
She was misdiagnosed quite young with pain. She had chronic pain but just diagnosed with the wrong condition.
I was diagnosed with pain quite young as well. (With Joint Hypermobility Syndrome with chronic soft tissue pain and then later with fibromyalgia- when one pain became combo pain even I cannot say- it was just pain) I get that struggle and experience. It is a rough one when you are young. You try to keep up with your peers. You can’t. I tried to hide it and learned early how to do so.
She described how the pain was and the intensity.
I was like, this is so me. I can so relate to this person’s experience with pain. And when you read something like that you feel less isolated. This person Gets my experience. My life.
Both of us later diagnosed with fibromyalgia. A very similar, sucky, history of pain.
And my immediate thought when I read That was: Oh, well, that’s not so bad then.
What the what? Where did this stupid weird thought come from?
My second reactions was: just because I have something Does Not Make it Not Serious. It is serious and I have to stop believing it isn’t just because my history has shown people ignore it. And if they ignore it, it must just not be that bad at all. And I shouldn’t ‘make a fuss about it’.
I am going to explain how it is serious because it is. Even though my moronic brain underestimates it and undermines it. And treats it like it is nothing because I have been taught it is nothing.
I am in a wicked Flare right now. I have a hard time getting up the stairs. The pain in my legs alone is making it hard to sleep let alone walk any distance. The fatigue makes me laid out sometimes ALL DAMN DAY.
I remember this pain when I was young. I remember struggling to keep up with people my age. Failing. Having to compromise, pace and stick to my limits in order to manage my pain… and losing some friends as a result.
I remember what it was like in university with it unmanaged and untreated. Having a hard time listening to a prof and writing notes because by the time I went to write the note… I had already forgotten what he said. How painful it was to walk to certain parts of that larger campus. And the day I want to get signatures on my thesis to All the profs… the pain was so excruciating I was walking inch by inch and still couldn’t do it and broke down crying in failure and pain and abject misery. Until a prof found me and got that last prof to come to me.
I remember being honked at a crosswalk on a bad day because I LOOK FINE but I was in so much pain I could only move very slow.
And I know there are times where I 15-minute walk is agonizing. Sometimes it isn’t. It is fickle and unpredictable and you never know when it is going to be torture or you can walk for half an hour no problem.
I know the brain fog is insanely frustrating at work and impacts my productivity. I would have binders of ‘quick notes’ I’d make if I forgot something insanely simple. And it would be so embarrassing when I couldn’t think of a simple word in front of customers. Or Ever remember their damn names.
I know the pain can be severe. It has been this week. Well, longer, but very severe this week. Trying to do minor physio stretches to help it but, man, it hurts like a mothertrucker.
I know the fatigue alone can be severe. It has been this Winter.
I know I NEVER sleep well. I never ever sleep well. When I get to sleep, I wake up frequently and wake up so damn tired.
I could go on and on with the IBS-D severity, the rashes, the insane itching, the severe burning allodynia pain that hits you, and so many other symptoms that interfere with life.
But hey, it isn’t THAT bad, eh? It’s JUST fibromyalgia, after all. Right?!
I always underestimate and undermine my pain. I am always stoic about it. I always grin and bear it. I always brush it off as not as important as it is. I always underestimate it to doctors. By the way, that entirely doctors’ fault. Back in the day, when stigma with FM was Super High they taught me, as a woman, that it was just stress, all in my head, nothing to make a fuss about, that Fibromyalgia didn’t even exist anyway, and not to worry about it because they were not going to treat me anyway… or was I just depressed? And under the weight of all the stigma, you learn that it isn’t just that important and no one really cares anyway and you are just going to have to deal with it yourself.
So it is doctors’ fault I do what I do now.
That I ignore symptoms… seeing if they will just go away… and if they do not I rate them on seriousness before ever mentioning them to a doctor.
That I underestimate my pain because they think I am exaggerating anyway. I know this is counterintuitive… but they don’t LIKE it when you make a fuss as a woman. So I don’t. I am stoic as they come. No matter my pain level. And no… that doesn’t help one bit for pain treatment. I fried my hand in a deep frier once (2nd and 3rd-degree burns) and made not a peep about it so I didn’t get even a pain killer even though, yes, I was in a fuckton of pain. And, man, I wish I had screamed like a banshee but that isn’t how I was taught to behave. And that is how That does Not work for me. And never will but it is now ingrained in the way I treat my pain outwardly.
I diminish the importance of symptoms because I do not want to be seen as a hypochondriac.
I use my words to express things that are important, yes, but I do Not EMOTE at all. Not a tear. Not a sign or indication of distress.
I loathe that I had that thought when that person suffers like I do. For as long as I have. And I know the impact that has on a person. Being ill throughout childhood, teens, 20’s… when everyone around you is doing all the things you cannot and you are so freaking tired and sore all the time… is not a fun way to grow up. And it doesn’t get better, man. It compounds with comorbid conditions.
So I think the way I think about my pain as Lesser because of the way it was treated by so many people in my history has really messed up my beliefs about it. That is not cool at all. That immediate reaction I had… shows me I still, still to this damn day diminish my own experience of pain as not as important and I shouldn’t ‘make a fuss about it’. Even though at the same damn time I am very aware I have had severe problems coping with that pain and symptoms. And not coped well at all. And struggled Immensely and the Impact on my life has been severe. And my fibromyalgia has gotten worse, not better, with the addition of comorbid conditions and other medical issues. It compounds the pain and fatigue and cognitive issues. I Know it is Bad. I live it. I am aware that it is and I cope the best I can.
But if you ask me… I will underestimate it. I will diminish it. I will laugh it off. I will hide it. Because there is still that damn part of me influenced by that old stigma that I shouldn’t ‘make a fuss’ and that no one believes me anyway and that they all assume you’re exaggerating and you must downplay it for anyone to believe you.
What is true. What is real.
What I felt reading her story and others like hers about their experiences with fibromyalgia… that is real. When I empathize with their pain because it is my pain. When I empathize with their struggles because they are my struggles. When I empathize with the massive impact fibromyalgia has had on their lives because it has also had a massive impact on mine. That is real. That is true. Her experience. My experience. That is true. And not even the deep dark depths of the truth. Just the skimming the top of the truth. Not the harsh truth no one wants to hear. Just the basic truths people can handle. We could go into the depths of what it is like, for sure, and it an ugly chronic pain story for sure. Chronic pain can be a dark place. But this is just the bare facts. The simple truth of our experience. Valid. And should be acknowledged.
The stigma of doctors… that is the lie I have still embedded in my brain that needs to be killed with fire.
Stigma can be internalized. I have said it before. And I have been aware I have internalized stigma before. I just wasn’t aware I had diminished my experience of fibromyalgia so much that my immediate response was ‘oh, that isn’t so bad’ when I know based on experience just how bad it actually is.