Note: This was written a few weeks ago, forewarning – it is very ‘woe is me’ and completely un-inspirational but I thought I’d share it anyway.
I am severely frustrated right now because my hand/forearm cramps are acting up again, both sides but predominately my right hand, presumable because I use it more, anyway it is making it really difficult to type right now. I lost the ability to write more than a paragraph with a pen by hand around 10 years ago, but luckily it’s the new millennium and we have computers and smart phones so other than the odd note to a kids school teacher I rarely have to hand write anything.
It’s an issue that is ever present on a mild scale seperate to but also weaving in and around my mental health problems. It also flares up really badly from time to time and when that happens it’s really hard to do basic things like hold a coffee cup, cut with a knife etc – it renders me to arthritic grandma status for anywhere between a few weeks to a month and then settles down again. Normally when this flares up it flares with a bunch of other bizarre disconnected physical symptoms, headaches, weird vision, numbness, tingling and stiffness (like I over did it at the gym)mouth ulcers from hell and increasing upper back/neck/shoulder area pain.
The first doctor I saw about these issues when I was about 16 said it was caused by iron deficiency because of the eating disorder, then it was because I was still a vegetarian so I even started eating meat again, then it was because I was pregnant, then I was told at 19 after having my second child that it was because I was too fat. (!) Then I lost weight (and relapsed) so it was because I was too skinny, then I had my 3rd kid and finally had a normal BMI and no iron deficiency so it must have been because I was stressed.
During a really bad flare Mum made me change doctors and drove me there herself, I was so stiff I was barely able to walk, borderline incontinent, dizzy, lost my sense of smell, had useless hands not to mention what I know know was severe dissociation and depression – I needed constant help to care for my children. The new doctor was really nice, he listened and ran a stack of blood tests. He was concerned about the possibility of MS and referred me to a neurologist, the waiting list was 8 months. By the time the appointment arrived my flare had passed and I was symptom free and even able to climb stairs and smell again, I was also unexpectedly pregnant with my 4th child. (Surprise!)
At the long awaited appointment the Neurologist spent less than 10 minutes with me, he asked if I could smell some cloves (I could) and got me to walk across the room (no worries) then told me there was nothing neurologically wrong and he couldn’t give me an MRI even if he wanted to because I was pregnant. He charged me $450 and said my symptoms were psychosomatic due to stress/depression leaving me humiliated and feeling like a total fraud who was wasting everyones time. I didn’t go back to the nice doctor out of sheer embarrassment that after all his kind concern, I was just subconsciously ‘making it all up’.
When I started having physical issues again I didn’t do anything until years later I suddenly got a very obvious foot drop and was forced to seek help. I was referred to a different neurologist and given an MRI which was negative for MS (yay!), unfortunately the steroid treatment I was given only took 1 day to launch the manageable and rather productive hypomanic episode I had already been in for several months into a full blown psychotic mixed mania that was the beginning of the end of my public service career.
I was treated for mental health issues and after a subsequent depression the mania re surfaced, they looked a little further into my history of depressions and wonderful periods of euphoria and careless impulsivity I was officially diagnosed with Bipolar Disorder and part of my life suddenly made sense, but not all of it, I still had those pesky physical issues although they were never as severe before my 4th pregnancy. I also still had the damn foot drop which lasted more than 1/2 a year.
The neurologist had initially said the foot drop was definitely physical because of something to do with a nerve conduction study but after the Bipolar diagnosis my GP was certain it was all psychosomatic. So due to that embarrassment coupled with the fact that nothing was treatable I didn’t bother going back to the doctor for these ‘same old’ problems, until now. I decided to go back to the GP and ask for a physio referral just in case there was some sort of strengthening exercises I could do to help the issue.
GP : “We never found any specific cause in the past and you have a history of mental health issues, so we can pretty safely assume it’s psychosomatic, now fuck off and stop bothering us.” (Okay, she didn’t say the ‘fuck off’ part.)
Me: “I honestly don’t care WHY it’s happening anymore, I’m happy if its psychosomatic then maybe it will go away, but in the interim, maybe some exercises or even the placebo affect of seeing a physiotherapist will help? Please just make it stop because it’s making my life really, really difficult!”
GP: “Definitely psychosomatic, but I will give you the physio referral if you insist”
Sometimes it just infuriates the fuck out of me, you know? I know it’s in my head, I know. I accept that we have ruled out everything else and proven that to be fact but it still hurts and it still irritates me because there is so much judgement and stigma associated with psychosomatic pain/issues. I am aware on one level that this is probably no more consciously preventable than depression is, I mean we all know we can’t think our way out of a thinking problem, or whatever that catch phrase is. Subconscious playing up and causing a physical sensation, yadda, yadda, I understand the theory but still I can’t help but hate myself a little more every time my arm goes numb again or I get another headache or whatever weird sensation is happening.
Right now I am really struggling to even type – my typing ability isn’t usually affected like this and I keep making mistakes because my hand is trying to twist itself into a pretzel while I push it anyway because all I want to do is rant and rave. I also want to stomp my feet and scream at myself, “For fucks sake Kate, pull your fucking head in and STOP this shit! There is absolutely NO FUCKING REASON for this pain or muscle contortion. YOU are causing all of this to YOURSELF you are MAKING THIS UP in your silly little brain, they did scans and bloods, we all know that there is no problem to find because IT DOESN’T FUCKING EXIST, the pain is IN YOUR STUPID LITTLE IMAGINATION and yet you can’t seem to stop torturing yourself for no obvious reason or gain! You don’t like the pain, you certainly HATE the embarrassment of seeing doctors about it and so why can’t you just fucking STOP making life so difficult for yourself!!!!
Wow I’m being super catty today, sorry, I’m apparently mean when I’m frustrated. I do know that psychosomatic pain is still legitimate pain, it is still real pain felt by the body even if the cause isn’t physiological and I am not trying to diminish anyone else’s experience I am just really, really over it. I got so low after that doctor visit that I became suicidal from just the embarrassment of the whole thing.
Have you dealt with psychosomatic pain or have you had doctors dismiss your physical concerns due to you mental illness diagnosis?
Update: I did talk to my psychiatrist about this and she is very certain that it’s physiological not psychological and the physiotherapist agrees, she thinks the hand stuff is from an issue with my upper back and is fixable, she is giving me exercises to work with. Fingers crossed!
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They are so quick to label as psychosomatic when they can’t figure it out. having mental health issues makes them even quicker to dismiss pain. The thing is pain is real regardless. Even when there is a known physical cause, pain is the body sending messages to the brain. So in a way ALL pain is “in a person’s head”. I was dismissed by a GP as having psychosomatic pain. When I went to a nurse practitioner and she said “your pain is real” , I burst into tears at being validated.
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im glad they believed you! and glad its fixable! psychosomatic pain is tough to deal with Ive dealt with that a lot! All trauma related!
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