Having a chronic illness, especially a rare one like Mast Cell Disorder or Ehlers-Danlos Syndrome or Dysautonomia may cause you to feel alone. There are not many physicians that specialize in these disorders and many of us spend years, if not decades, feeling sick and going from doctor to doctor, only to be told there is nothing wrong with us.
You will hear me say this over and over, but I do not believe they are so rare. I think they are grossly underdiagnosed. Because the symptoms can overlap with many other conditions, they can be difficult to diagnose. Mast Cell Disorders and Dysautonomia especially are not disorders that doctors see in their medical practice and “sort of” remember something about them from medical school.
Whether you have one of these disorders or all three like me, having significant symptoms that the majority of the medical community either don’t know about, don’t understand or discount can be frustrating, frightening and isolating.
I think the very worst is having family members and friends who either just don’t want to learn about it, think you’re exaggerating or straight out think you’re a hypochondriac. I used to spend way too much time educating them, explaining symptoms, reactions, reasons for not being able to do certain activities. Finally, I started to focus only on my health, not convincing them. It was a relief.
So how do you NOT feel so alone when family, friends and the medical community are not necessarily on your side? Setting healthy boundaries is very important. I’ve gotten very good at that now. I have fired doctors, ended friendships that no longer served me and spent less time with family members that were hurtful. But… I do surround myself with friends who care about me despite being sick, although there aren’t too many, I’m happy with the couple. I see some of the best specialists and ask for referrals from them to see others.
But the most important support is meeting others with the same disorders, mostly online. Because I’m all about keeping a positive attitude even in the face of very unpleasant situations, I “hang out” with the more positive people. You can find amazing support, caring, concern, compassion and friendship in these communities. I do not go there to complain about the disorders and being sick. We all have to vent at times, but generally, we help keep each other up and offer support and love at a level difficult for healthy people to comprehend.
Reach out to others. If you want to connect to a supportive community for one of these disorders and cannot find it, I will be happy to assist you . You can either email me or use my contact form found on the side and bottom of each page of my website and on my contact tab. You are NOT alone. And you may develop the most incredible friendships because we understand. Comments are always welcomed below.