The title of this blog is hard to understand. I am not saying that everything is all in your head. I mean what the hell does that even mean? These are four words that can crush my soul as well as many who are going through an invisible fight. If you feel included-I’m sorry- but I do hope that by the end of this, you will feel included in a group of strong people instead of “crazy” people (I’m using crazy because that’s a word people use in every day language-but I hate that freakin word). If you aren’t someone who feels included, please read on. The knowledge of this phenomenon could change people’s lives.
When I was in elementary school, I smacked my foot on a toilet. Yes, a. freakin. toilet. Now lemme tell you-it hurt, but I continued to go about my day. Well it was awfully swollen and I couldn’t really walk on it by the end of the day. My mom figured that I could have actually sprained or chipped my ankle smacking it on the toilet. Don’t even ask me how that occurred…. We went to the doctor and they put me on crutches because of how bad it look and hurt. I eventually scheduled an appointment with a foot doctor. This was the first time I ever heard those four excruciating words: All in Your Head. The doctor told a 10 year old kid that the pain was all in their head. “It’s almost like when people go to war and come back with PTSD” he told me. First thing asshole: PTSD shouldn’t be explained as “all in your head”. Second thing: never tell a kid their pain isn’t real. Long story short, he took me off crutches immediately and sent me to PT. Now, was that my first time experiencing some of what CRPS had to offer? Possibly. Or was it a bad sprain? Most likely, but those four words mentioned on a normal Tuesday for the doctor will stay with me for the rest of my life.
As time went on, the words were just in the back of my head. I worried if something as simple as a cold was sticking around for too long because who the hell knows. If a foot injury could be “in my head” then so could anything else. At least that’s what the 10 year old told herself. Then sadly, I got a disease that couldn’t be seen. One of the things that people don’t explain is that there is no medical test for Complex Regional Pain Syndrome. That means, you need to do all tests to rule out anything (Lupus, Cancer, Diabetes, etc) and then end up with the CRPS diagnosis. So, when I was a 17 year old kid, I did so many (let’s just say uncomfortable) tests. One of the last tests I had was an EMG-a test where they insert needles into your muscle and move it- yes, as painful as it sounds. It tests to see if the major nerves are fully firing in the body. They thought perhaps one was cut when I had surgery under my armpits. It was so important because this was the test that was going to give us the answers-at least that’s what my neurologist thought. At the end of the test the technologist sat me down and said “your test came back completely normal”. I broke down. Not the reaction I’d assume you’d think. But to me, this meant that my last chance of proof of the pain was out the window and that the pain must be made up in my head. The technologist told me her suggestion was to see a therapist. Now listen, I agree, you do need to see a therapist if you are under as much pain as I was and diagnosed with a disease with no cure. However, this shouldn’t be the first and only suggestion. Especially since anyone with eyes could see that I was struggling with not having answers.
*I believe that doctors and technologists need to educate themselves better on how to tell someone they have a chronic pain disease that won’t show up on tests. However the diagnosis is given will clear a pathway for the way the patient views the disease for their life.*
Throughout the rest of the five years, I was both suggested and flat out told that my condition was in my head. Anywhere from being told to push through and just ignore the pain to telling family not to even discuss the pain and color changes. Ultimately leaving me alone to fight the symptoms. I was even told by a therapist that my pain was because of my dad leaving when I was young. I mean what the actual f***. It took me this long to actually be confident that I am not making up my pain or disabilities. I only got to this point because I was surrounded by a medical team for 2 months who didn’t question me or my symptoms. Still that’ll waiver, but I know that if I had the chance to stop creating the pain and struggles I would. Trust me, even if I WAS someone who liked the attention- I would give up the act with the amount of shit I’ve gone through.
It is so beyond critical to understand your condition. That is the only way I will be able to beat mine. A full understanding. I am working hard to reroute my brain. I would love to tell off all the people in my life who caused this fear of the four words. But I don’t have the time and they don’t have the capacity to understand my condition. Sure, my brain and nervous system is technically controlled in my head, but they clearly don’t have much being controlled in theirs. So if you are someone reading this who struggles with being told something is “in your head” or “not real” then you can kindly respond to those people with screw you. I believe you and you believe you. Just remember that. ❤️