Community Views: The Biggest Misconception About My Rare Disease

Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do not know your story. But it is valuable to share your experiences to spread awareness of your rare disease.

Symptoms of rare diseases can be hard to cope with, affecting your life at home and at work. Even so, people often have trouble understanding the extent of your symptoms or how regularly they occur. To dig in to this issue, we reached out to the RareDisease.net Facebook community. We asked, “What is the biggest misconception about your rare disease?”

Over 60 community members shared the daily adversity they face when their disease is misunderstood.

You seem fine

People dismissing your disease is frustrating when you feel you are in a constant battle every day. Even getting out of bed in the morning can be difficult. When you are strong every day, others may assume you are fine. But it is important that people are aware that you hide much of the pain you feel.

“You're overreacting. It must be something different because you have had it too long and you look fine.”

“If you are working, you're fine. People do not imagine that my every step is a struggle.”

“It must not be that bad because I have a good job, I'm young, and I look fine. Just because I'm used to the pain doesn't mean it doesn't hurt 24/7.”

“That because I look fine, I'm doing great. You can't see everything inside and how much I'm hiding from the rest of the world.”

“You're seeing a doctor and taking meds. You'll be fine.”

It must be something else

Despite the doctor visits you have had, people may suggest that you have a less severe illness. Others may tell you that you are exaggerating your symptoms. It can be enraging to hear someone tell you how you feel or what you have.

“It’s just bad allergies!”

“Women can’t have hemophilia. We hear it all the time.”

“It’s all in your head. Nothing is wrong with you. Your knee dislocated one time, so it won’t happen again. We have never heard of Ehlers Danlos, so it must not exist.”

“They think my daughter will get better and they always ask if she's feeling better. Like one day she's just going to wake up and be fine! It doesn't work like that.”

Not understanding your symptoms

People living with a rare disease may feel they are alone in dealing with their symptoms. When people, and even doctors, do not understand your disease, it can be difficult to keep going. It is important to remain confident in sharing your story.

“Patients are not cookie cutter people. We don't all fit the common symptoms and conditions. Frequent recurring symptoms may signify it's not what you typically think it is. Listen to your patients.”

“That you can't have more than one rare disease. It's too rare to have that happen. Well, my inherited DNA, mutated genes, and comorbidities disagreed with that statement.”

“That we just get tired. In the description it says 'muscle weakness' when it really should say 'loss of muscle function.' People don't understand that the medical use of a common word is not the same as the common meaning of a word.”

“I am tired of being dismissed, ignored, and treated as a woman with mental health issues or attention seeking. I dread seeing new doctors, as most often they aren't going to be helpful to me. I have the last few years gotten some really good doctors, so that helps.”

Cannot feel your pain

You may feel physical or emotional pain with your rare disease. Even so, you continue to work and perform daily obligations. Because of this, even your doctor may assume that you are okay. Trying to explain pain that others cannot relate to can be really stressful.

“When you talk about your pain and the doctor tells you that you do not have pain with this disease! I really want to answer with 'I pray you never get it,' but I keep my mouth shut!”

“It causes widespread pain, but they tell you that you shouldn't have pain.”

“I have a very high tolerance for the pain, so even that gets me questioned, as 'normal' patients wouldn't be able to do what I have in spite of it. I also learned, unfortunately, as a child to compartmentalize pain so I could function.”

We are grateful to the community for sharing the difficulties of living with a rare disease. Sharing your story helps spread awareness of the symptoms of your condition and can help others understand you better. Thank you for providing a lens into the experiences you have every day.