themighty logo

6 Lessons I’ve Learned While Living With a Rare Disease


Living with a rare disease is never easy, however it has taught me some important lessons. Here are six things I’ve learned since being diagnosed:

1. You are not alone. Despite having a disease that roughly one in 100,000 people have, I am not the only one living with it. Support groups on a Facebook are great. You can finally relate to someone who shares your struggles. And you can ask questions and have someone who has been in a similar situation respond.

2. You are not defined by your disease. I may have to carry a vial of Solu-Cortef, a syringe and needle, and wear a medical alert necklace, but I am not my disease. I am my own person. I have struggled greatly, through diagnosis and all the challenges that presented, but I have persevered.

3. Diagnosis can take forever. It’s called a rare disease for a reason. I presented with very common symptoms (abdominal pain, nausea, vomiting, diarrhea, fatigue) that could have been linked to any number of very common illnesses and diseases. It took 10 years of countless doctors visits and tests to be diagnosed with adrenal insufficiency.

4. Keep fighting, always. It’s worth it in the end. Don’t give up on yourself. You know your body and symptoms better than anyone else. Don’t let doctors belittle you. Find someone who will listen.

5. Never apologize. It’s not your fault you’re ill. You are not a burden. You are wanted and loved.

6. Don’t take things for granted. I’m blessed I was diagnosed. There are people who still aren’t, who are still struggling. I could have (and probably would have) died from an adrenal crisis. No one would have known what to do. I am here, and for that, I am thankful.