Some patients that contact me ask me how I was able to manage my diseases this “good”? I therefore wrote down some advices about coping mechanisms in my daily life.
Accepting my limitations was probably the most important point in dealing with my conditions. It would be a lie if I said that I was able to deal with them from the very beginning. No, it took years to learn that I have to listen to my body; that I was no longer functioning like before, and that I could not force myself to do anything. Like everyone else that suffers from a chronic condition, I was scared like hell 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 wasn’t able to go back to my old life.
I was desperate and angry about the fact that nobody believed 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. I started to feel a little bit more relaxed after I knew what I was fighting against.
In 2014, I was diagnosed with Ehlers-Danlos syndrome, which was causing all my diseases and instabilites. This event was a key point in my life, because I had to finally 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 your well-being 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 for all chronic disease patients, no matter if they suffer from Ehlers-Danlos syndrome or cervical spine instabilities.
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.
To be able to read and understand scientific publications, I have worked very hard to improve my english skills. If no doctor can tell me what is going on, I need to find out by myself. Nowadays, I only rely on myself. The more I know about my disease 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 some „normal time“. This means time where I do not think about my illness or anything related. Of course, the majority of my day I am spending with scheduling appointments, researching, talking to others with the same disease or just resting because of my chronic condition, and it was my own decision to be as educated as I can. But from time to time I also need some disease-free zone; time-outs where I only care for my mental well-being; a time to meet 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 to feel like a normal, healthy person. That helps to recharge my batteries for the upcoming bad days.
I often realize how things that have worked one year ago suddenly do not work anymore, and it hurts to give up hobbies I love all the time. So I have to find something new. When 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 situations.
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 often wondered what I should do with my life. I was missing a sense and purpose. This website was a huge step into the right direction for me. I wanted to pass on my experiences and find something that makes me happy. Therefore, the right thing 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 journals. Among them are, for example a pain, a mast cell and a POTS diary. Those help me to keep an overview about my symptoms and, in the next step, to change certain factors and improve my overall condition.
Always wanting 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 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. On top of it, we have to fear how to survive financially.
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 sadder and angrier than the fight for the recognition of my diseases. And again and again it hits me hard when someone assumes I would fake my illness, because “you do not look sick”.
As good as I can deal with my illnesses, as little I can handle ignorance or unfairness. I was often judged by people and had to justify why I couldn’t function the way they wish I would.
This psychological pressure and stress often leads to a break down where I fall into a deep hole from which it is very hard to come out again. 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. However, do not get me wrong, every now and then I will also have the feeling that there is just no way out. I think this is completely normal. The important thing is to never ever giving up.
Every negative appointment, argument with one of the many German authorities or a new deterioration of my symptoms do get me down at times. But then I let myself being weak for a moment, cry a little, pick up the parts which are left of me, put them together again, get up and continue the fight.
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 is “the spoon theory”: