Many people with chronic illnesses know this feeling: You go to a doctor. You know something’s wrong. But the doctor brushes you off. You leave the doctor’s office, still suffering, but now also confused, hurt, angry…and possibly, at some point, too tired to fight on. You stop going to doctors. You push on through your suffering, you may even try to hide it because no one takes it seriously. But you suffer.
I’m not sure whether doctors realise what they actually do when they dismiss someone’s suffering. I can’t believe that they simply don’t care; they swore an oath to help people, after all. But no matter why it happens, there are some serious consequences when a patient is dismissed.
Patients lose trust in doctors.
Many conditions will actually worsen if untreated. Some of them may end fatal.
Patients may start believing that nothing’s wrong with them, thus setting themselves up for feelings of guilt and self-loathing because they aren’t as high-functioning as healthy people around them.
When I grew up, I was scared that I may develop arthrosis, because a loved one was suffering from it and I was showing some symptoms that pointed to it. I was experiencing knee pain and back pain on and off, I definitely had some of the risk factors, and I went to see specialists in my teenage years almost more often than my GP. I knew *something* was wrong with my body. I hardly knew days without pain of some sort; I was always tired, I’ve been having severe sleeping problems for as long as I can remember.
But each time I went to a specialist, they examined me, then told me not to worry, I didn’t have arthrosis, there was nothing wrong with me…and handed me painkillers (that didn’t really work against that type of pain) and told me to rest. They never tried to find out why I kept having acute pain. They never asked whether I showed other symptoms that I might not immediately link to the pain, and thus not mention.
After I moved away from my hometown (and my awesome GP and gyno), I stopped going to doctors (apart from a dentist) altogether. For years, I didn’t even have a GP because I never bothered looking for a new one. I didn’t have a gyno, I skipped all those recommended annual check-ups (apart from the dentals, and I only went there because I need a retainer that needs to be replaced regularly). I was done with them. I felt like I was only wasting time going to doctors because they wouldn’t really help me anyway. I was a freelancer so when I got sick, I just rested more; I didn’t need a sick note from a doctor for anyone.
At that point, I had already been diagnosed with various chronic conditions, some of which couldn’t be treated, some others which were enough under control that they didn’t need regular treatment. When you know what you’re dealing with, and what your options are, you can learn to cope without a doctor. What will drive you crazy, though, is the stuff that’s not been diagnosed, the stuff that could be something really bad, or all in your head.
Fast forward to present day.
After another two and a half years of trying to figure out what is wrong with my knees and back (since the pain kept getting worse and more difficult to ignore), and being brushed off like before, I finally have my diagnosis. But not because a doctor finally noticed; I got diagnosed after someone online mentioned my symptoms sound like this and I went to my GP requesting being sent to a specialist to get the suspicion checked out. Turns out I have fibromyalgia, and may have had it for at least 17 years at this point (several doctors pointed out that my period pain may be partly due to fibro even though the suspicion of endometriosis has also been confirmed by now). I also have a grave lack of vitamin d, which we don’t know how long it’s been there, and what kind of damage it may already have caused to my body. Was never tested until I was checked for fibro because apparently my current (and soon ex-) GP doesn’t believe in testing for it in young patients (I got extensive lab work done to find out the cause of my sleepiness, which could have been caused by a lack of vitamin d, about three years ago but it was never tested).
Why am I telling you all this?
To raise awareness. My diagnosis came after I had to quit working because the symptoms had got too bad. I am struggling with finishing my BA even though I love learning, and always excelled at this kind of stuff. I have lived my adult life in a constant struggle of “Why can’t I function like others?” and beating myself up for being “lazy”. My sleeping problems weren’t taken seriously and I was told more than once to “just go to bed earlier”. I disappointed people because I didn’t have the energy to do something, and I felt horrible for that because they didn’t understand–heck, I didn’t understand it was because of an undiagnosed chronic illness.
I am only now, slowly, regaining my trust in doctors (because I finally have some doctors again who care). I am struggling with accepting my own limitations because, due to just pushing through my suffering that seemed to have no cause for years, I didn’t have the chance to adjust gradually and maybe stop the downward spiral before it was too late; no, I crashed hard when I had reached the end of what I could push myself through.
I am wondering whether I might still be able to work if I had been diagnosed with fibro ten years ago, or even earlier.
I have a hard time accepting that being a low-functioning adult at best (and a non-functioning minion at worst) is my normal now, and that treatment may or may not help me function better again.
I feel cheated by my body and brain for letting me down like this.
But mostly, I feel betrayed by those doctors I went to for help who brushed my suffering and my worries off, who sent me home with painkillers and told me it’s nothing.
I am 29, and I carry around a whole bag of chronic illnesses and conditions. I am not fine, never was, and probably never will be. But if doctors had listened to me from the beginning, I might be in a better place today than I am.