I am writing to you, but in reality this letter is for all the doctors I have seen since I was a child. So many things I wish to say but also ask. I know the congenital condition I suffer from was little known back then, yet I can’t help but wonder if you might have gotten an inspired idea as to what was going on in my body, were you not so eager and quick to dismiss me at first as a ‘hypersensitive ‘ child and later as a ‘hypochondriac’ adult.
It puzzles me how you couldn’t put all my symptoms together and figure out there was something wrong with my connective tissues. Muscle weakness, dislocations, subluxations, extreme fatigue, heat and cold intolerance, exercise intolerance, fainting, dizziness, multiple and frequent injuries, inflammation after inflammation, being bendy like a pretzel, low bone density since an early age, compression fractures, easy bruising, hematomas and so on.
Didn’t the thought of Ehlers-Danlos come to mind? Hypermobility, was the first I heard of at age 26 at the British School of Osteopathy in London back in 1987. I was too flexible they told me and the manipulations didn’t hold. On the contrary I was getting worse and worse, so they decided that it was too risky to treat me further and suggested that I see a physiotherapist.
That is when I first heard about core strengthening and increasing muscle tone. Only thing, instead of getting stronger and better, that was when I began to suffer injury after injury and my whole body was inflamed and in terrible pain. The muscles would not recover from the exercises and I got into a nightmarish vicious cycle of burning pains for over 4 years.
At that point I had had enough, I couldn’t tolerate the pain any more and decided to stop any physical exercise. Surprise surprise, the pain stopped! I was pain free for a few months, but then my muscles got weaker and weaker and could not support my body any more and other kinds of pain began.
My joints were getting injured, bursitis, tendonitis, periarthritis, you name it. Now I had serious muscle imbalances affecting the whole right side of my body, couldn’t lift myself up from crouching position, was getting up the stairs with great difficulty, everything was getting harder and harder to do. Yet I did not give up, I kept working in the garden, doing DIY projects, walking the dogs, taking care of the household, overseeing construction, managing and developing property.
Sometimes I wonder, had I given up and stopped struggling, would you have paid more attention? Would you have listened? Or would you have turned me into a guinea pig feeding me every anti-inflammatory and painkiller there is? Oh! I forgot the anti-anxiety pills that were suggested every time my dizziness and coordination was getting worse! Stress you said! Had too much stress in my life.
You weren’t totally wrong about that doc, I did indeed have a tremendous amount of stress in my life and not knowing why my body was giving up on me made it tenfold worse! Not having a diagnosis, being dismissed as a hypochondriac, didn’t exactly help. It just added to my burden. Let alone that not knowing what was wrong, I endangered my health by insisting on living like there was nothing wrong with me and I subjected myself to unnecessary hardships, not to mention several trips to the ER due to dehydration and exhaustion.
Am I mad at you? You might be surprised but am not as mad as I should be. I know that Ehlers Danlos and Hypermobility Syndrome are only lately getting the research and attention they deserve as congenital conditions. Furthermore, not knowing is what kept me going all these years despite it all.
I could have done however, without the condescending characterizations, suspiciousness of the medical world as well as the disbelief from my family and friends. I could have done without the accusations, the sarcastic remarks and the put downs. I could have done with more support and acknowledgement, attention and care, help and relief. The irrational comments of friends saying things like : “ Just stop being in pain!”… As if I wanted to be in pain, as if there was a switch I could turn on and off! Or “There is always something wrong with you! You always need attention!…
Growing up hearing such comments from everywhere, one begins to believe them. Especially when there is no diagnosis! The thought crosses your mind :” what if they are right? What if there is nothing wrong with me and it is all in my mind?” Yet your muscles tearing, your ribs slipping, your tendons being chronically inflamed don’t lie. Your legs giving up on you, struggling to breathe, collapsing in the heat, are not exactly things that happen to every healthy person with minimal exertion!
Getting on a bicycle and getting your tailbone dislocating sideways, suffering excruciating pain, unable to sit on a chair for over 3 months, is not exactly normal, or nothing to be concerned about. Suffering a compression fracture in three vertebrae age 14 because a classmate jumped on your back at school, is not your every day happening either.
Yet I survived and worked my way through the disbelief, the accusations and sarcastic remarks, even to this day and post diagnosis. Even though a geneticist diagnosed me age 54, the specialists that see me still treat me with disbelief, suspiciousness and sometimes even disrespect. Even though I don’t even ask for pain relief as I can’t metabolize medications well, it doesn’t matter to them. I must be a liar to suffer from such odd symptoms, no matter if they are all written down in the literature and recent research studies.
No matter how many thousands or millions of EDSrs there might be on earth, no matter the fact that research shows that it is much more common than previously thought, it doesn’t matter to the medical world. Unless it acquires the status of MS or ALS or Cancer, there is no chance in hell EDSrs will ever be taken seriously!
Do you know how exhausted I am doctor to be living a life where I have to explain things to you over and over? When I have to email you the latest research and beg you to read it? Do you know how it feels when you have to force yourself beyond humane limits to do things just because it is easier to cope with the pain than with the looks of disbelief and mockery? How it feels to have to refuse a disability sign for your car, because of the abuse you get because you have an invisible disability?
Did you say I sound angry and frustrated? You bet I am! Am angry, exasperated, frustrated, desperate and furious at the world! Can you imagine doctor having to live your every day being questioned? Not to be given the chance to talk and express what it is you are suffering from without being snapped at dismissively? Being told you are simply unfit and you ought to exercise more when you got exercise intolerance and can’t even get up a flight of stairs without your thigh muscles burning and getting into a spasm?
It feels extremely hard, frustrating, desperate and lonely doc. There are moments I get so depressed and loose all faith. There is no cure, there is nothing you can do for me. But at least give me your acknowledgement and understanding. Don’t try to fix the unfixable just because you are frustrated yourself at my vulnerability and weakness. Just be my doc, listen to me, help me live as best I can with whatever resources I have. Help me reduce the number and intensity of my symptoms, find solutions for my every day life. Be there for me doc, that is all I ever needed and will need.