Each of us knows the obstacles that result from a chronic illness. Absurdly I hear more often from others that the disease itself, the physical limitations, are easier to tolerate than the psychological pressure which occurs frequently. I can confirm this as well.
When I became sick I suddenly had to handle things which I have not known and have not expected.
The loss of independence: Especially in the early days 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 mid 20s a completely new life began. I would say that this was a big challenge that I handled very well.
I had to bury my old life and that was a lot of pain.
The loss of the job and the suddenly emerging financial issues: Being chronically ill is expensive. Even if we do live in a good health system in Germany there are many alternative treatments that are paid out of pocket. Additional expanses for aids, medication and physical therapy are always there.
The emerging financial problems can lead to the loss of the own apartment and chronically ill patients start to struggle to financially survive.
The struggle for the recognition of our disease when it comes to disability authorities and physicians: For me the by far most painful and hardest time in my life was the struggle for the recognition of my diseases in front of health insurance, disability, and social security. The various reports which massively injured my dignity and the constant need to justify why I am sick were mentally hard. I felt like I am not allowed to go out of my house so nobody would think I am not sick enough. There were several experiences that almost brought me to the point of giving up and stop fighting. I barely had the energy to constantly defend myself. That time led to the immediate switch to „defense mode“ as soon as I felt that I was not believed.
Even with doctors there are the same experiences. Some do not want to make the effort to learn something about my disease, some do think they know better how my disease feels to me than I do. If I always got an Euro for being asked how to spell Ehlers-Danlos Syndrome I would be rich by now.
A lot of patients have the exact same experience but yet nothing changes in the system. For me it was very important to find ways how to relax, to forget it all for a short amount of time. It takes a fair amount of strength (or composure) to get through these fights. Chronically ill people have more than one of those problems every single day of their lives and that’s what makes us strong.
The struggle for the recognition of the disease in front of family and the general public: There are also bad experiences in our private social environment. I assume that each of us have heard someone talking behind their back. Things like: she is just too lazy to work or she doesn’t look sick are accompanying me every day. Fortunately I am one of the lucky ones that has not had this problem with family and friends. But it is not uncommon that chronically sick people are doubted by their own family which must be very painful. If even the last stabilizing 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 every day and seven days a week and add constant pain, neurological problems, gastrointestinal issues, blood pressure fluctuations and immense fatigue with exhaustion.
Some do give up under this pressure and are not able to continue this fight. Each of the people who would call someone who gives up weak should read the sentences above carefully and rethink how they would cope with this load of problems.
Chronic diseases come along with many hurdles but they sometimes change us for the better. We learn to be empathic, open minded, do not demand so much from other people and above all we do not judge about things we cannot know.
Most of the people I have met with similar or exactly the same diseases such as mine were above average motivated, extremely eager to learn and very strong.
Many of us are reduced to their disease but we are much more than that.
We are fighters, lawyers, doctors, physical therapists, friends, children, partners, financial advisors, event planner, travel guides, psychologists, health advocates and many more. We are exactly what we have to be in every situation.