How Do You Cope?
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
I have a therapist. Also, I met my boyfriend in a chronic illness forum during 2020, so it helps that he understands what it's like to have a chronic illness. Dealing with my super rare kidney disease is becoming more hopeful. Dealing with my less rare CVID is frustrating but everyone in my family helps me with my weekly treatment to make it as easy as possible.
, thank you for shairing! It seems like you have an amazing support system. It's cool that you met your boyfriend on the forum, and have built a mutually supportive relationship (I love a good love story!). - Warmly, Donna (Team Member)
I get frustrated with myself when I can't do certain things I'm angry
i have a tattoo on my right forearm that reads, "chronic illness warrior since 3-19-1985." i see it, and i rub it, and i have found that it re-enforces my firm belief that i am unique and strong and up to the task of living with the rare disease of recurrent meningitis and the other eight chronic illnesses it launched. that happened the day after i learned i had passed the bar exam. my career as a lawyer was extremely short-lived because i had to retire on disability six years later. i love your charm bracelet! we all have to reinforce our belief that we are indeed warriors, and that we are indeed up to our tasks of dealing with whatever our diseases throw at us. i wear a bracelet with a joan of arc medal on it right next to my medic alert bracelet. 
Love both the tat and the Joan of Arc medal on your bracelet! Thank you for sharing <3! Gina
One day at a time. Also by staying on my regular time schedule of meds and rest. Also realizing that I have to give up the idea that I can do everything I used to do. I also try to talk to myself about remaining positive.
yes one day at a time!
Pain meds, muscle relaxers, heating pad, marijuana
I haven't found any type of muscle relaxers to help nor cannabis... I have a pain pump I guess I'm lucky in that aspect lol that's how Dr's think. I can't get pain pills...I'm glad those things are working for you
Sounds like pain is the main issue you are suffering from...
May I ask what disease you are coping with?
Do these methods help control the pain for you?Gina Miller,
Team Member
