Community Views: We Are Rare, But Not Alone
Last updated: August 2023
Rare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress of symptoms. It gets even harder when you feel alone in dealing with them. But it doesn’t mean that others can’t relate to your personal battles. Others can understand the challenges of living with a rare disease.
We reached out to community members on the RareDisease.net Facebook page to learn more about the shared experiences of people living with rare diseases. We asked, “What have you found is the most common experience among people with differing rare diseases?”
Nearly 50 community members responded to our prompt! We noticed many common themes in what community members felt.
Missing the proper care
Many had problems finding helpful treatment from doctors. Rare diseases become even harder to live with without the proper help. It is discouraging when you feel even doctors cannot help you.
“Lack of appropriate specialists unless you live in or near a major metropolitan area. Doctors who dismiss that which they do not understand rather than trying to figure out what's really wrong. I can see this coming a mile away these days.”
“Took 47 years to be diagnosed. I was told everything from I was faking to I just had anxiety. Turns out, it was a rare immune deficiency disease.”
“Finding a decent doctor who knows about your condition.”
“Knowing there is a treatment for my grandson, but med aid refused to pay even after they were instructed 3 times in high court.”
“Incompetent doctors who do nothing about your condition.”
A common emotion felt by community members was frustration, especially frustration with constant symptoms. It can also be irritating when people struggle to understand you. When people are dismissive of symptoms, it can diminish the efforts you put in every day.
“Frustration and feeling misunderstood, or dismissed as a hypochondriac.”
“Frustration...getting diagnosed, dealing with diagnosis, explaining to family and friends, and often people saying you don't look sick.”
“Frustration with doctors.”
“Figuring out how to get through a normal day. Chronic or terminal…one only has so many spoons for each day. And some days they have one spoon.”
No one understands
Having a rare disease can change your life. Daily activities or work can become even more tiresome. Every day becomes a battle in itself. Not many can understand the constant toll it has on you. When others are unaware of your condition, it can be lonely to deal with. It is important to remember that you are not alone in feeling this way.
“No one listens. Everything is a fight. So be prepared to be exhausted all the time.”
“Crushing fatigue and others in your life not being able to truly understand what you’re going through.”
“High pain tolerance, which leads to others and professionals overlooking or not believing your claims of pain because you are handling it so well, you must be exaggerating your symptoms.”
“Knowing there is nothing you can do to prevent your grandson from dying before he turns 20.”
You are not alone
We hope this can help community members know they are far from alone in their journey. We want to hear from you! What have you found is the most common experience among people with differing rare diseases? Tell us in the comments below.
How often do you run out of spoons?