20 Lessons We've Learned as People Affected by Rare Disease

Contrary to what many think, rare diseases combined aren’t as “rare” as they may seem. In fact, Global Genes, a leading nonprofit focusing on patient advocacy and promoting research for rare conditions, notes, “If all of the people with rare diseases lived in one country,  it would be the world’s third most populous country.” In the U.S. alone, there are 30 million people living with rare diseases. With over 7,000 rare diseases identified and counting, these people continue to require increased awareness, funding and research.

For Rare Disease Day on February 28, The Mighty teamed up with Global Genes to ask our communities what lessons they’ve learned after being affected by rare disease. Oftentimes, when people share their stories with illness, pity is the first emotion felt by the person listening or reading. These answers show that those affected by rare disease are not to be pitied. They may have difficult days, months or even years, but they are strong and resilient. In fact, rare patients and families are paving and fueling the way for research and awareness. We are proud to showcase our community members to raise awareness for all rare diseases.

Here’s what they had to say:

 1. “If I try to compare myself with healthy people, I feel depressed. When comparing to others with scleroderma, I feel guilty for being ‘better off.’ Ultimately, I learned that comparisons are a waste of time and energy.” — Brandee B.

2. “I have learned, and continue to learn, how amazing unconditional love can be. My beautiful boy was diagnosed with an extremely rare genetic disorder called GRIN1. The last two years have been difficult, rewarding and full of surprises.” — Lauren W.

3. “Growing up with a rare disease, there are many challenges. Personal challenges, physical challenges, even holding onto hope is a challenge. The one thing that is most prevalent is that we are resilient against obstacles. That is also what makes us rare.” — Jesse M.

4. “There is no age requirement to demand change and fight for your life.” — Beth V.

5.“I learned a lot. Most importantly, I learned to listen to my body and to not listen to doctors when they tell me there is nothing wrong.” — Melany C.

6. “My son taught us he doesn’t have to be a statistic.”– Angela V.

7. “I learned no matter how ultra rare your condition is, people do care about your story! Even a herd of eight ‘zebras’ can stomp their hoofs so hard to lay asunder the ground. It’s a tremendously stimulating feeling for each person who has learned that a small group of individuals can indeed make a difference.” — Neena N.

8. “At the end of the day, I’m all I’ve got. I have learned I need to be my own rock. Strength comes from within. I’ve been through too much to stop now.” — Tanya W.

9.“I’ve finally come to terms with the fact that I will be sick for the rest of my life. I will never be healthy. I will always feel some pain or a symptom from this disease. I’ve learned to accept this illness as a part of me, like any other feature.” – Jaundra G.

10. “I have learned I can be a useful member of a patient community and help others with the same condition, in the same way being part of the community helps me.” — Neil S.

11. “I’ve learned that it’s OK to just be myself and that I don’t owe anyone an explanation for my appearance. My illnesses may be invisible, but I’m certainly not. Some days I forget I just don’t blend in and there’s nothing wrong with that.” — Gail P.

12. “I don’t have to change my goals and dreams, I may have to change the path to achieving them. But if I do have to change my goals, it’s not the same as giving up.” — Heather S.

13. “We are the experts on our kids! I’m still learning to harness my power to speak up again and again if something doesn’t sit or seem right.” — Melisa S.

14. “I’m basically Wonder Woman disguised as a complex regional pain syndrome (CRPS) and gastroparesis warrior.” — Hannah C.

15. “I learned to be kind to myself more. A little positive thought goes a long way. — Tiffany T.

16. “I’ve learned that I am strong and resilient, even when I don’t feel that way in the moment. I’ve also learned it’s OK to take a break. You can’t do anything if you try to do everything. Spend your time (spoons) wisely and look after yourself. You only have one body, one heart, one mind.” — Kathryne Z.

17.“Even though we have some hard days, I can’t give up on my hero.” – Amy W.

18. “I’m stronger than I thought I was, and I can inspire others to help them with whatever they’re going through.” – Michael A.

19.“My condition has made me a better human being. Being different, feeling like an outsider… it’s given me a perspective about life I otherwise wouldn’t have had.” – Sally H.

20. “Whenever you or a loved one is affected by a rare disease, the single, most effective thing you can do is advocate. Alone, we are small, but together we stand tall.” — Marlo S.

Has your life been affected by rare disease? What’s one lesson you’ve learned? Let us know in the comments below.

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