We all know the obstacles that result from having a chronic illness. Ironically, our physical limitations are not always the biggest issues we have. Sometimes those are easier to cope with than the psychological pressure that occurs frequently.
When I became sick, I suddenly had to handle problems that I have never spend a second thinking about, for instance, the loss of independence.
Especially in the early days of my becoming ill, when I had no idea how to deal with all my neurological issues, I hardly left the house alone and was heavily dependent on my family. I had to leave my old self behind, and had to accept that in my 20s a completely new life began. I would say that this was a huge challenge I handled well. I had to bury my old life and that meant a lot of pain and many tears.
Another major challenge for me was to lose my job, and finding myself in a situation where I struggled financially as well. Being chronically ill is expensive. Even though I do live in a advanced social system in Germany, there are many treatments that not covered by insurance. Additional expenses for helpful aids, medication and physical therapy are always present. The emerging financial problems can lead to the loss of one’s apartment, and some chronically ill patients struggle to survive financially.
One thing that not only stressed, but also traumatized me immensely was the struggle to get my disability recognized by German authorities, for instance the retirement insurance (which is similar to disability in the US) and physicians in general. It was the by far most painful time of my life when I had to fight for the recognition of my diseases in front of health insurance, disability, and social security. The various reports they conducted that massively hurt my dignity, and the constant need to justify why I was sick were mentally hard to tolerate. I felt like I was not allowed to leave my house, so nobody would think I was suddenly healthy again. I worried someone would think I was only betraying our social system by “acting” sick. There were several experiences that almost brought me to the point of giving up, and I seriously thought about just giving up the fight. I barely had the energy to constantly defend myself. And as soon as I felt that I was not believed in, I switched to “defense mode”.
And then there are the issues with some medical doctors that refuse to learn something about my conditions. Others think they know better how my disease feels like than I do. If I would always get an Euro for being asked how to spell Ehlers-Danlos syndrome, I would be rich by now.
Many patients make the exact same experiences, but still nothing changes in our health system. It was very important for me personally to find ways to relax, to forget about it all for a little while. It takes a fair amount of strength to get through any of these fights. Chronically ill people have more than one of those problems every single day of their lives, and that’s what makes them so incredibly strong.
There are also struggles in our private environment. Sometimes we may not be taken seriously by family and friends, or the general public. I assume that each of us has heard someone talking behind his/her back. Sentences like: “You are just too lazy to work” or “You don’t look sick” are accompanying us every day. Fortunately, I am very lucky because I did not encounter this problem with my family and friends. However, it is common that chronically ill people are doubted by their own family which is for sure very painful. If your last supportive anchor is eliminated, how would you feel? Everyone of us needs someone who is there during the time when we cannot be strong.
Imagine you have all those problems 7/24, and then add constant pain, neurological problems, gastrointestinal issues, blood pressure fluctuations and immense exhaustion.
Some might break down under this pressure and might not be able to continue fighting. The people that call someone who gives up weak, should read the sentences above carefully and rethink their attitude.
Chronic diseases come along with many hurdles, however, they sometimes change us for the better. We might learn to be more empathic and open-minded, and we stop demanding so much from other people. Above it all, we might learn not to judge too quickly.
Most of the people I have met that suffered from similar diseases such as mine were more than motivated, extremely eager to learn and very strong.
We are much more than our disease. We are fighters, lawyers, doctors, physical therapists, friends, children, partners, financial advisors, event planner, travel guides, psychologists, health advocates and much more. We are exactly what we have to be in every situation.