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15 Things People Affected by Rare Disease Wish Their Friends Knew

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One of the most challenging aspects of living with or having a loved one with a rare disease is communicating how it impacts your life to others. After all, how do you explain something that even some doctors have never heard of? How do you make someone understand what they can’t see clearly on the outside?

When it comes to balancing doctor’s appointments, and searching for diagnoses and treatments, maintaining friendships and a social life is a priority that often falls behind. So, we asked our Mighty community what they’d like their friends to know about how their lives with rare disease. Their responses show the uncertainty and isolation often felt in the rare community and the need to feel included and and understood.

1. “I miss being a social person. I don’t miss events because I want to but because I have two rare diseases that don’t have a ‘schedule.’”

2. “This is part of who I am now, but it is not who I am now.”

3. “I don’t want pity. I just want you to stick me with through the good and the bad. Please don’t abandon me.”

4. “Having a child with a rare disease (in our case, one that is fatal with no treatment or cure) isn’t easy. Unless a person has gone through something similar, it’s hard to understand how it affects the family. But, please don’t be afraid to ask us questions or offer to help!”

5. “I’m constantly worried people think I’m faking.”

6. “You don’t know someone who knows someone whose cousin’s child was just like mine and now after XYZ treatment, therapy, or herb he or she is fine. That’s just not our reality, as much as I appreciate your desire to relate.”

7. “Please don’t judge the path you don’t walk. These struggles are real. These tears of joy are real.”

8. “I would give anything for my kids to be healthy, but I love them just as they are. Sorry for missing coffee, again.”

9. “It’s OK if you don’t know what to say. It’s OK if you have questions too, but sometimes we just want to enjoy life and the cards we have been dealt. We don’t always have to talk about ‘it.’ We do enjoy everyday conversations just like everyone else.” 

10. “I may seem ‘lazy’ on the outside, but on the inside, I am constantly fighting my own mind. Every day that I get out of bed is a victory for me.”

11. “My treatment is experimental. We’re just making it up as we go along.”

12. “I may always look upbeat and happy, but deep inside my head, there’s always fear and anxiety.”

13. “We are just like you but with extra precautions. My kids don’t know or quite understand they’re unique; they want to be just like other kids! I am more than happy to tell my kids’ story and answer your questions. We just want to be included and not shut out. It’s already isolating as is.”

14. “I may never ‘get better.’ I may never be cured; it may not go away. It’s a genetic disease I was born with. I might have good days; I will have bad days. I am always in pain every second of the day — that never changes.”

15. “I may not be the person I was before I was diagnosed. I may have to do things a little bit differently to accommodate how I’m feeling, but at the end of the day, my disorders will not keep me from living my life.”

Are you affected by a rare disease in some way? What do you wish your friends understood about your experience? Let us know in the comments below.


Originally published: August 1, 2016
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