One of the hardest things to deal with during a chronic illness is the loss of relationships. Your body has betrayed you. It has taken you months or years to determine what has gone wrong. You have seen dozens of doctors, been told it is in your head, and maybe dismissed with some antidepressants along the way. You have questioned yourself. You have grown accustomed to the stares of your coworkers, family members, and friends. Whispers behind your back are so common, they are the background music to your life.
If you are lucky, one glorious day a test finally comes back that shows something is abnormal. Your heart pounds, your nerves are all standing on end, but your brain keeps telling you to calm down, because you have been here too many times before only to end up disappointed. You don’t want to get your hopes up, but just maybe this time…this time…
The doctor gives you incredible news. YES, you have a definitive diagnosis. You have never heard of it, don’t know what it means, but it has a NAME. It is not in your head! Even as tears stream down your face, the questions pour out.
Sadly, your questions revolve more around your ability to prove your illness to yourself and those around you than it does to your future quality of life, but that is how it goes. In a world where information is so quickly accessible, where answers are two clicks away on a smartphone, the possibility that a person could be sick for months or years without a definitive diagnosis does not seem reasonable.
Now that you know what you have, you naively think everything will be better. All the skeptics will apologize, and they will rally around you and do whatever they can to help. Gaggles of people will Google and learn about your condition, especially your family. They will educate themselves and in turn help educate you. They will hold your hands and take you to doctors’ appointments and…
First, most people do not know how to act around a chronically ill person. When they thought you were just crazy, they could talk behind your back and judge you with you no problem. But now you are sick, with something they have never heard of. The better ones will be embarrassed, but too embarrassed to actually talk with you. The middle ones will try to pretend none of it happened, and pretend you don’t exist. The worst of them will run as quickly as possible in the other direction.
Those closest to you are already exhausted with all the medical crap, and unless they are one step from sainthood, they are pretty much done with it. My experience has been more painful since my diagnosis than it was before. Unfortunately, there is no handbook for “What to Expect After You are Finally Diagnosed with a Rare Disease After Ten Years of Thinking You Must Be Crazy”. If I were writing it, though, my first suggestion would be to immediately line up an excellent therapist if you don’t already have one. You will need it. You will need someone to remind you, weekly, that this disease is not your fault, that you did not bring this upon yourself, because many people around you will be telling you that it is.
Several years after my diagnosis, I mostly have a completely different set of friends. I am fine with that. Only a few of my closest relationships survived the years of uncertainty.
At the end of the day, all we have is ourselves. All we our guaranteed is us. “In sickness and in health” does not truly cover the years of uncertainty of a long-term, undiagnosed, chronic illness. Some people are just incapable of hanging in there. The patients do not have a choice. We have to fight, and if we have to fight alone, that is what we will do. All other relationships be damned.