Because lately I have been asked more often by other patients how I am able to manage my diseases this „good”, I wanted to write down my very personal experiences in coping with all these emotions.
For me a very important point was to accept my limitations. It would be a lie to say that I was able to deal with it from the beginning. It took years to learn that I have to listen to my body, that it was no longer working like before and that I cannot force myself to anything. Like everyone else here I was scared at the beginning of my disease, I was afraid and thought I would die, I could not understand what suddenly happened to my body and I did not want to accept that this should be my new „normal“ now.
My entire life has changed from one second to another and I did not want to believe that I could not go back to my old life.
I was desperate and angry that nobody would believe me and that no doctor wanted to find the cause for my symptoms.
When I finally got my diagnosis things became a little easier. Although I was still missing the support of physicians, with the diagnosis I at least knew why my body reacted this way. When I finally knew what I was fighting against I became a little more relaxed.
In 2014 I was diagnosed with Ehlers-Danlos syndrome, which was the cause for all my diseases and instabilites. This event was a key point in my life and I had to realize that this condition will accompany me throughout my whole life.
So there was only one option: make the best out of it and try to improve my condition a little bit.
Since I have learned to accept my diseases I am able to deal with my limitations far better than before.
However, acceptance is nothing you can force yourself to. It is a long process everyone of us has to go through in a different way.
Knowledge is extremely important to deal with Ehlers-Danlos syndrome and also cervical spine instabilities.
There is no way around that I, as the patient, have to be my own specialist. I am the only one who knows how I feel and react to certain things. No doctor can tell me those things.
I have worked really hard to improve my english skills so I can read and understand scientific publications.
Because if no doctor can tell me what is going on I need to find out by myself. I only rely on myself.
The more I know about my disease the better I can deal with it and the more I understand my body.
I also try to inform my doctors about new information I have learned.
Not every doctor wants to be educated by their patients or get any information. So do not rush things. There are doctors who are actually thankful for publications, you just need to find them.
It is very important for me to have my „normal time“. This means not to think about my illness or anything related. Of course the majority of the time I am spending with researching, talking to others with the same disease. It was my decision that I want to get as many information as I can.
Nevertheless, from time to time I also need some disease-free zone. I need time-outs where I only care for my mental well being. A time to meet with friends, read a good book, see a movie or go for a short walk. I have only very few moments when I feel well enough to actually do something fun. Therefore I take these rare hours and try to feel like a normal healthy person. That helps to recharge my batteries for the upcoming bad days.
Over and over again I realize how things that have worked one year ago suddenly do not work anymore. And it hurts that I have to give up hobbies all the time. So I have to find something new. If my body is not working I try to keep my brain busy and the other way around. Every day of my life is different and it is all about adapting to the new situation.
There is always something you still can do, you just have to constantly reinvent yourself.
Finding a purpose
When I became sick and lost the ability to work I have often wondered what I should do with my life. I was missing a sense and purpose. For me, this website was a huge step into the right direction. I wanted to pass on my experiences and find something that makes me happy. Therefore the right thing for me was to stand up for people with my disease, to tell my story to other non-affected people and to fight for the recognition of my disease.
This is what gives me the strength to keep going and to not lose courage.
On my really bad days I sometimes do not want to involve all the people around me. Then it helps to write down my emotions in a diary. Since I have been seven years old I am writing and it helps me a lot to deal with all the negative experiences.
In addition to my usual diary I have some disease related diaries. Among them are, for example, a pain, a mast cell and a POTS diary. These help me to keep an overview about my symptoms and in the next step to change certain factors and improve my overall condition.
Always want a little bit more
Although I have accepted my disease I still never give up to try to improve my situation a little bit. This was the reason why I travelled to the USA after I was not getting anywhere here in Germany. And this is also why I question things. I always want to get a little further.
What about the things for which there is no solution?
Unfortunately there are also other problems than „just“ the disease itself for which there are no solutions like distraction, adaption, or acceptance. Anyone who is chronically ill and no longer able to work, knows how it feels to be worried about the future. Then the struggle how to survive financially comes on top of the already very hard burden of the disease.
I have not found any solution for the never-ending disputes with any authorities. There is nothing in the world which stresses me more and makes me more sad and angrier than the fight for the recognition of my diseases. And again and again it hits me hard when someone assumes I would not be sick.
As good as I can deal with my illnesses, as little I can deal with ignorance or unfairness. I am often judged by people and have to justify why I cannot function the way they wish I would.
This psychological pressure and stress often leads to a total break down where I fall into a deep hole from which it is very hard to come out again. It is hurtful degrading and very difficult.
Then usually the only help is the support of my family and the thought that all other people have exactly the same problems.
All these things help me to cope with my life. But do not get me wrong, every now and then I also fall in a deep hole and have the feeling there is just no way out. I think this is completely normal. The important thing is to not give up and to get out there again.
Each negative doctors appointment, authorities or a new deterioration of my symptoms also get me down. But then I let myself being weak, cry a little, pick up the parts which are left of me, put them together again, get up and continue fighting.
As long as we move, there is always a door which is going to open. It just does not help anyone to hold on to negative experiences.
A great way to explain to your loved ones what you have to deal with every day.
The spoon theory: