Here’s What I Would Say To The Patients Who Are Being Told Their Disease Is “Not Real”
July 2, 2016
By Karina Sturm
Have you ever had this feeling like you’re missing something but you just can’t figure out what it is? Like you lost one piece of a puzzle and you can’t find it? A piece in the middle is missing that would complete the whole picture but without it, it’s just not going to work? And it almost drives you crazy because you have to live with this feeling every hour of every day of your life?
This is exactly how I felt the four years before I was finally diagnosed with Ehlers-Danlos Syndrome. It was only two years ago when I had the best and the worst day of my life at the same time. I felt relieved to know what caused my cervical spine instabilities and all the other problems I had. But on the other hand, I was scared to know what my future would hold for me now.
My personal journey began with horrible neurological issues like breathing issues, numb arms and legs and balance problems–all of which contributed to sudden and permanent disability. Over all those years I saw many doctors and despite assuring them that the origin of my problems must be physical, they were calling me mentally ill, just because they could not find a cause during the 10 minute appointments we had.
Due to my own research shortly after the onset of my neurological issues I was diagnosed with a highly unstable spine and even though I had this on images I still was doubted, not believed in and not treated the right way.
Years and years of physical therapy and pretty much every alternative therapy I could find did not make me any better but instead lead to severe instabilities throughout my whole body which should have been the first clue for my doctors to think about an underlying cause. But again, nothing happened. Since I already had many mental diagnoses (and honestly, no person in the world could have all of them at the same time…) most of the doctors did not even bother to order any tests.
So what else could the traumatized me do then to find help in another country, if my country wouldn’t?
It was always clear that I would do a lot to get the answers I so desperately needed, but was I really sitting on a plane to the United States for another alternative treatment to stabilize my joints? I was, and unfortunately again, the therapy failed. But this time, the doctor wouldn’t leave my side and tell me I was not sick. He was searching for the missing piece of the puzzle that I felt I had lost all the time.
Many coincidences, luck and probably also fate brought me to one of the worlds specialists for Ehlers-Danlos Syndrome and after a thorough examination I was not only diagnosed with EDS and a highly unstable cervical spine, I even got a list of many more suspected diagnosis that are likely to occur with EDS and were I showed many signs of.
This moment was the beginning of a new life – my chronically ill life. A life with Ehlers-Danlos Syndrome and 17 other diagnosis we found over the next couple of month. After years of suffering and 6000 miles away from home I finally found the last piece of the puzzle! The months after getting diagnosed with EDS and all the other conditions I spent with grieving what I have lost and being angry about all the things that could have been avoided if I got diagnosed earlier. I tried to regain the trust in myself, the respect for German doctors that I lost completely and I tried to forgive the health system of my country.
Then I decided it is enough with the pity party about my old life and at the time to start a new one. One that is exactly of the same worth than the old one, just in another way. I decided I would try to raise awareness in my own country so nobody would suffer the way I did, I started researching and learned all I could about my conditions so I would never ever have to trust anyone else but me again, I started to write articles in two languages and told my story and finally I even published a book about my way to diagnosis.
My whole life is about EDS but in a positive way. It is not about being chronically ill, it is about how to live a good and happy life with a condition that fate decided to give me. It is not a burden, it is a chance to do something good and to grow.
Since I know what I am fighting against I am able to handle my disabilities far better. Now my enemy has a name and I finally can understand why my body reacts in a different way than it has before.
I started to trust myself and other people around me again and I even trust a couple of doctors around me. It will of course take a long time until I can forget what has happened to me over the years but the most important thing is: I am trusting myself again and I know I was right the whole time.
If there is any advice I could give to other EDSers then it would be this (of course we all are different, so this is only what helps me):
- Research and read as much as you can, knowledge is power!
- Share your knowledge with others, join a community and talk to other EDS patients. Educate as many people as you can.
- Always trust your gut, if something does not feel right, it is not right for you.
- Be patient with your body and respect its limits. It is okay and normal to sometimes go way over your personal limits but do not hurt yourself.
- Try to see the beautiful things, the small things that make you happy. Because of my disability I suddenly appreciated things like a good conversation with a friend during summer on a lake or a nice trip to the ocean so much more than I had before. There is beauty in every thing we just need to see it.
- Do something positive while you still can. If you do not feel good, accept it and do not feel bad about it or push through the pain. Take a break and start again if you are better.
- Be respectful to doctors but still show them that you are your own bodies specialist and let them know what you found out and what you know about your disease. Ask as many questions as you need. Start to forgive doctors and people who have treated you bad before your diagnosis. They did not know it better. Being angry all the time just takes away energy you need for more important things.
- Try to stay active if you can. It is hard to find the right physical therapy. We are all different. Start with very easy exercises and wait 24-48 hours to see if the exercises helped or made you feel worse. Do not do all at once. It is always good to do even just 10 minutes of moving every day.
- If people do not understand your condition and feelings try to explain it. You will experience ignorance and disrespect at some point of your journey. Try not to get angry but instead talk to those people and explain yourself. Do not take any advice or good wishes other people give you personal. I know there are all those lists about what to say to someone with.. and so on. I do not like them. Respect non-disabled people and try to explain your situation to them. Most of the time they will understand. And usually a phrase like “get better“ is meant in a good way. Tolerance and respect work in both ways!
- Do not leave out your friends and family. They cannot exactly understand how you feel but they will try as good as they can. Be patient with them and explain what you are struggling with. You will lose some friends, do not feel bad about this, your real friends will stay.
- Do not compare yourself to other sick people, everyone handles their own condition in a different way and you do not need to feel bad if you have a weak moment. Yes we all want to be strong and not show how we struggle, but sometimes it helps to be weak in front of the right people.
- If your body decides you cannot do a certain activity, find something new to enjoy. Most of the time you will find something else you still can do even with your disability. Try to find new hobbies, something you always wanted to learn but never had the chance to.
- Give yourself one day per week where you relax and not think about EDS. I call it „my normal day“ when I do not think about EDS or do not do anything which is related to EDS.
- Stop planning and be spontaneous as often as you can. I always planned everything into detail. With EDS there is just no way I could know how I feel even one hour later. It is very hard for me to be spontaneous but it also can be funny.
- Never ever give up. No matter how hard your situation is, do not give up. There is always something which is worth to live for.
About the Author | Karina Sturm
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