Community Views: Navigating the ER as a Rare Disease Warrior

Living with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care. Because most doctors in the emergency room (ER) are unfamiliar with rare diseases, these visits can be daunting.

The RareDisease.net Facebook page and the Social Health Network recently discussed emergency care for rare diseases. Questions included:

• What is your best advice to those living with a rare disease who have to visit the emergency room?
• What are your biggest obstacles when visiting an emergency room with a rare disease?

Here are the insights community members shared about navigating the ER.

Be prepared: Carry your medical history

The most common response was to bring along information about your medical history. It can help if you have a list of your:

• Doctors
• Treatments
• Drugs and dosages

“Make sure you have a short cheat sheet or 'Cliff Notes' version of your health history. Include medications, diseases, specialists you see, and allergic reactions to medications.”

“Create a 1-pager summarizing where you are now in chronic care, keep it updated, and bring it with you.”

“Always keep a brief description of your condition in your wallet.”

Speak up and ask questions

Respondents also shared the importance of advocating for themselves. They have knowledge and experience of their rare disease, and speaking up is vital. Bringing someone along to help advocate is highly beneficial.

“Advocate for yourself! Nothing can happen without your permission.”

“Have someone with you who can advocate for you.”

“Always remember you know you best.”

“Don’t be afraid to tell the doctor what you think your treatment should be or what doctors who have experience with your condition have prescribed.”

“Ask what they are going to do before they proceed with any treatment.”

Bridging the knowledge gap in the ER

ER doctors are not rare disease specialists. The person with the rare disease often knows more about their condition than the ER doctor. It is challenging to educate a provider when you are in extreme pain or having some other medical emergency.

For example, a patient with hereditary angioedema (HAE) may need to explain that their swelling is not a typical allergic reaction and requires specific, life-saving medication that the ER may not have on hand. Coming prepared with information about your condition can help.

“They literally don't know what the heck my rare diseases are. I have to carry around a medical binder with all the information, allowing them to review and decide if they want to touch me or send me to a specialty hospital.”

Medical gaslighting

Medical gaslighting with a rare disease is common in the ER. When doctors lack awareness of the disease, they may dismiss a genuine pain crisis. Or, they may assume the person with a rare disease is drug-seeking.

“They have no idea how to treat you, or you are dismissed as having an anxiety attack or being a pill shopper.”

“I have also been accused of attention seeking, having ‘low’ pain tolerance (ie, put your big girl panties on), and drug-seeking.”

Choose calm

It can be difficult to stay calm when you are experiencing pain or stress. Delays in treatment raise anxiety and tempers. Some members of the community mentioned that being patient improved their interactions with doctors.

“My best advice is to remain calm and think of the best outcome, not the worst.”

“My best advice is to be patient and kind even though it's hard when you're in pain and unfocused.”

“Coin a few specific phrases. Practice saying something like: ‘I understand you’ve declined further testing. Please note in my chart why you did so – I’d like a copy for my records.’”

“Try to keep as calm as possible.”

Thank you for being part of this community

We appreciate members of the RareDisease.net community and your honest responses. Sharing your experiences not only validates others, but it can also help another community member avoid problems in the future!

Have you had to go to the ER since your rare disease diagnosis? What tips would you give other members of the community? Tell us in the comments below!