May 19, 2023
There are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease means many people will not understand your health condition or how it affects you. Those living with a rare disease often had never heard of their condition until they were diagnosed with it.
To learn more about the most difficult effects of having a rare disease, we turned to the RareDisease.net Facebook community. We asked, “What is the hardest symptom to manage of your rare disease?” The answers show that people living with rare diseases may have more in common than they realize.
Daily pain
Many rare diseases come with chronic pain, and this pain may be all-consuming and draining. Respondents shared how challenging it is to function with pain. The kinds of tasks and activities they can do depends on their pain levels. And their loved ones struggle to understand this reality of daily pain.
“My friends do not understand what it’s like to hurt and be in this amount of pain.”
“Head and neck pain.”
“The pain. The rest I can just ignore and go on with life.”
Endless fatigue
Fatigue is another hallmark of rare diseases. Fatigue is more than feeling tired. Sleep does not chase it away, and powering through the weariness is often not possible.
Respondents shared frustration with their lack of energy. Daily tasks, planned activities, or friend visits often require too much energy, but missing out feels discouraging.
“The pain doesn’t bother me as much as being constantly tired.”
“Chronic debilitating fatigue.”
“Wanting to go out and do something, but I don’t have the strength to do it.”
“Fatigue breathlessness. I want to do things, but no energy.”
This or That
Which is harder to manage for you, pain or fatigue?
Top of Form
PainFatigue
Bottom of Form
Brain fog
A rare disease may bring brain fog from fatigue, pain, and drug side effects. Brain fog feels like pulling thoughts through molasses. Communicating may become difficult. Many respondents said they forget words, names, or appointments. Losing chunks of their memory and brain function feels frustrating for them.
“Loss of cognition.”
“Remembering to take my medication!”
“Never knowing what memory will elude me at any given moment or which from decades ago will pop up with no provocation!”
Community Poll
Does brain fog impact your . . .
Top of Form
Short-term memory
Long-term memory
Both
Submit
Bottom of Form
Looking fine versus feeling fine
The invisibility of their condition is the biggest emotional challenge for many people living with a rare disease. Their friends and family may not understand their symptoms or grasp their daily struggles. Some respondents said they wrestled with feeling dismissed because they look “normal.”
“Fatigue and looking fine, but feeling lousy.”
“Friends and family that have no clue about it and the result of saying you look like you’re getting along just fine – even though you’ve provided them with all the info.”
“No one sees or feels what you’re going through. Maybe we should stop acting so superhuman to spare THEIR feelings!!!”
“Constant pain and exhaustion but looking fine to everyone.”
“Other people’s perspective.”
Other symptoms
Of course, rare diseases are not all the same. Some symptoms are common between illnesses, and others are not. Different diseases affect different parts of the body in different ways.
While some respondents shared the unique symptoms they experience, it is clear that the emotional effects of these symptoms are similar for many people.
“My fingers and some of my toes are curled under. Very hard to function!”
“Unable to eat food.”
“Depression.”
“Bowel incontinence.”
“Itching.”
“Shortness of breath.”
“The cough.”
“Nightmares, cataplexy, and staying sick for months instead of days.”