10 Ways Anxiety 'Shows Up' With Rare Disease


If you have a rare disease or parent a child who’s rare, it’s extremely common to experience anxiety. In fact, a staggering 82 percent of people facing rare disease deal with anxiety on a daily basis.

Having anxiety is an important part of the rare experience we need to start talking about. Mental health matters, and when you’re not feeling well mentally, it likely has an impact on how you’re doing physically. If you believe you’re struggling with anxiety, reaching out for medical help as well as community support can make a world of difference. Remember, it’s OK to not be OK — especially when you’re facing the fight of trying to find cures and treatments, or search for doctors who want to invest their time and energy to help you.

We asked our rare disease community to share how anxiety affects them in their day-to-day life.

Here’s what they shared with us:

1. “Not knowing what the future holds.”

“The anxiety of not knowing how to prepare for the future is a big one — especially financially.” – Amy S.

“It’s very simple: I have anxiety because I don’t know what the future might hold. It’s hard to plan for something next year when you might not be able to get out of bed in two hours.” – Ashley T.

2. “It’s a vicious cycle.”

“I have cyclic vomiting syndrome which is induced by stresses — both good and bad. I can get sick anywhere, at almost any time. Knowing that causes me great anxiety. Episodes of vomiting can last hours, days, or weeks which also increases the anxiety of being ill again. Eating can cause symptoms, so I also feel anxiety about consuming anything. All these sources of anxiety aggravate my illness. More flares means more anxiety which leads to more flares. It is a very vicious cycle.” – Savannah L.

“I would like to go back to work, but I’m so stressed about having a flare and missing work. I have so much anxiety about putting that burden on an employer or co-workers that it triggers a flare. It’s a vicious cycle.” – Anne Marie G.

“With systemic mastocytosis, you never know what could cause your next allergic reaction. You’re never safe. For me, going out in public is extremely difficult for me due to my anxiety. I’ve had panic attacks in parking lots because I was afraid that something would trigger me and I would have anaphylaxis in the store. I am pretty much homebound because of my anxiety. Ironically, anxiety can also cause anaphylaxis in patients with mastocytosis. It’s a vicious cycle.” – Tiffany H.

3. “I’m worried how people will ‘see’ me.”

“Due to my conditions I have developed social anxiety. I’m worried how people see and talk about me, as my conditions are invisible. It’s stemmed from nasty comments such as ‘another ‘fake’ using a disabled spot.’” – Jade W.

“Having a complex medical status is extremely challenging. I have more than one rare condition and have developed extreme anxiety because of this. On top of the scariness of facing the unknown, I also fear being misinterpreted or judged because my diseases fluctuate and are ‘invisible ‘ to the average person.” – Eryn S.

4. “Going to a new doctor gives me tons of anxiety.”

“Yes, the anxiety of knowing that when you walk into the emergency department or the doctor’s office, you will undoubtedly know more about your disease than the doctor. Very often they have never heard of it, so they don’t know to take it seriously. It’s the panic of knowing that you are seriously ill and there is nothing you can do to make them listen to you.” – Lucy C.

“Going to new doctors gives me tons of anxiety because for 19 years I was told it was all in my head, or that I was making myself sick on purpose. I’m always worried now that new doctors or the ER staff won’t believe me.” – Kristina K.

“When you have a rare disease, going to new doctors is crap shoot. You don’t know what you’re in for. They might know what it is or they think it’s something imaginary. That causes many ‘spoonies’ to be anxious at doctor’s appointment because they don’t know what to expect.” – Charlotte H.

“I get super anxious driving because if I ever get in an accident, I’m scared the paramedics won’t know what my conditions are and will mistreat me.” – Kat S.

5. “My anxiety has taken over my ability to socialize.”

“Because of my rare diseases, I have anxiety every time I leave my home. I have anxiety about being seen, needing to talk to anyone, and if I’ll have enough energy to do whatever I’m supposed to be doing. I have to mentally prepare myself ahead of time just to be able to run basic errands or go to appointments.” – Hannah G.

“My anxiety has taken over my ability to socialize. Being rare and having gone through what I did to get my diagnoses,  as well as the friends I’ve lost along the way is difficult. I’ve lost all my ability to be social or even use the phone. My anxiety is so bad that my husband has to make all calls for me, and if someone calls me, I let it go to voicemail and can’t muster enough to call back. I panic and then think of all things that can go wrong. It all stems from the seven years of my rare disease diagnosis search, and the dismissals of doctors. It really messes with you and it’s a hard thing to overcome. Without my husband I would probably never see or speak to anyone.” – Amanda E.

6. “Everything is uncertain.”

“It’s so scary not knowing what will happen. Will my condition remain stable, or will the worst happen?” – Crystal B.

“Everything is uncertain. I am living minute-to-minute and nobody understands. I am a rare disease patient without a diagnosis.” – Tim B.

7. “I have a hard time sleeping.”

“I have a hard time sleeping and getting quality sleep because my anxiety won’t let my brain shut down fully.” – Jordan M.

“My son has a rare disease and along with it comes epilepsy. Since his seizures occur when he’s sleeping, I can’t sleep when he sleeps. He stops breathing during the seizures.” – April J.

8. “I have anxiety attacks.”

“I have Milroy’s disease. Since nobody really knows how to help it and there’s no cure or real treatment, I get anxiety whenever I have a flare-up or things start to worsen, because nobody knows how bad it can end up getting. This condition caused tumors when I was a little kid. Now whenever I hear the word ‘cancer,’ I have an internal panic attack that takes hours to stop.”

“I get anxiety when I’m faced with a problem because of my condition. It  fills me with dread. I seize up with fear and become uneasy, which leads to my body feeling more unwell. Heart pulsating, sweating — at my worst I will physically retch for a few minutes and then afterwards feel unusually calm. I can only describe these as anxiety attacks.” – Emily H.

9.“My anxiety prevents me from getting the help I need.”

“I have multiple unseen disabilities, and my anxiety often prevents me from getting the help I need (part-time wheelchairs, disabled toilets, etc.). It makes it much harder to deal with the pain.” – Kynya F.

“My diseases have taken so much from me, including my memory and  the ability to walk unaided, that it definitely has left me with anxiety. – Josephine W.

10. “My anxiety is born of the very nature of my rare disease.”

“My anxiety is born of the very nature of my rare disease. It can so easily gaslight you. The good days let you believe it will always be this way. And then comes the rug being pulled from underneath, and you feel awful for hoping and believing. The important thing is to never let ourselves stop trying.” – Ronni A.


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