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24 'Small' but Significant Things That Make Life With Rare Disease Easier

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This Rare Disease Day, thousands across the globe will gather to raise awareness for over 7,000 rare diseases. According to Global Genes, one of the leading rare disease non-profits supporting patients and families, approximately one in 10 lives with a rare condition, but only 5 percent of those with rare conditions have any available treatment and/or cure. Most awareness for the 350 million people affected by rare disease is targeted at drug development and racing to find cures.

On the other end, it’s important to recognize what living with rare looks like on a day-to-day basis. Many have their schedules filled with doctor’s appointments, needing to take time off to see a slew of endless specialists – oftentimes requiring lengthy drives or plane rides. Some deal with flare-ups and constant levels of pain. Yes, people affected by rare disease are indeed warriors who fight to get what they need, but at the crux of it all, they are extremely human, trying to fulfill their hopes and dreams, and maintain their quality of life.

The stresses of living with or caring for someone with a rare condition can undoubtedly become difficult to manage, which is why The Mighty and Global Genes asked our communities, “What’s one ‘small’ but significant thing you do as a patient or caregiver that helps make life with rare disease easier?”

Here’s what they told us:

  1. “Celebrate the ‘small’ milestones and victories. I was one proud mama when my daughter started using a straw or when she finally put her feet down when she was 2. Every little improvement is celebrated.” – Tracie CG.
  2. “We search for doctors who encourage quality of life. We had a whole team of physicians at a major California teaching hospital literally give up because they didn’t know what to do. They left my daughter in bed on palliative care. Now we have a new team and new life.” – Robin C.
  3. Don’t compare, or at least try your hardest not to.” – Kristen B.
  4. “Self-care in general, and nurturing myself the best I can. My disease can be irritated by stress. Trying to relax and carve out ‘me’ time every day, as well as relying on my faith to help lessen my stress levels helps.”– Crystal R.
  5. “Take it one day at a time and celebrate every little ‘inch-stone.’ As endless as it might seem, believe that a few good days will eventually follow the bad ones! – Divya R.
  6. “Always live in the moment and cherish every little milestone no matter how small it is.” – Melissa S.
  7. “You can’t be perfect. Sometimes the things that aren’t ‘good’ for your health, improve quality of life. For example, I love my morning coffee even if it can cause problems. Life needs to be worth living.” – Alex B.
  8. “I order my meds and treatment seven to 10 days in advance. Many times my specialty drugs that give me quality of life take more time to come on time because of pre-authorization and insurance challenges throughout each new year.” – Rebekah P.
  9. “Forgiving myself when I’m unable to do things I used to be able to do easily.” – Maddi L.
  10. “I have a book with all my conditions and the doctors who follow me for each condition. The book has their contact information along with the key facts and key concerns. This has made ER trips run much smoother.” – Susan D.
  11. “I let myself be a little lazy. Since I get really bad fatigue and injure easily, I make a point to only tackle things that I know I can handle. I don’t deny any help that I’m offered, and I make sure to take it easy and rest whenever I can. I’d rather be a little bit lazy and have a good day than overwork myself and have several bad days as a result.” – Rachel C.
  12. “Having that one person who’s constantly there for you and will drop everything is so important – someone who may not understand, but believes you.” – Heather B.
  13. “Make sure you carve out some time for yourself. Caregiver burnout is a very real and exhausting thing. You can’t care for anyone else in a healthy manner unless you are also making time to care for yourself.” – Ashley C.
  14. Be there to fully listen to your loved one that you care for.” – Rebecca E.
  15. “Listening to music makes me feel better, even if I feel so tired from the pain. Music makes me happy makes me feel alive.” – Sofia M.
  16. “I keep notes saved in my phone. Then, it’s always with me. I can quickly e-mail it or text important information to a friend or provider.” – Emily F.
  17. I like to educate and encourage questions about our rare disease.” — @SwabtoSave
  18. “I try to not get angry that I have to sometimes spend a couple weeks resting on the couch. It’s extremely difficult, but it’s easier to get through if I don’t beat myself up about it.” – Stephanie N.
  19. “I try raising the profile by raising awareness both in person and online through my blog. Also, I attend seminars where I’m invited to speak and educate junior doctors and medical students on the pros and cons of my care and what they can do to improve our experience and quality of life.” – Robyn A.
  20. “I joined support groups. Having other people to talk and vent who actually understand what you’re going through makes it a lot easier to deal with.” – Bonnie P.
  21. “I meditate daily, spending 15 minutes deep breathing and checking in with my body which sets my day up as best as can be. This helps my attitude, which helps my ability to cope with pain.” – Jennifer R.
  22. “I recommend having at least one friend who has the same rare disease as you. So on those days, that’s tougher than others, there’s at least someone else you know who understands you and actually gets it.” – Kristyn B.
  23. “Come up with a basic summary of what you have to tell everyone about your rare condition since no one (likely) knows what you’re talking about. If they want more details, by all means, explain. But lots of people want a summary to help carry the conversation over and has the basic facts.” – Brandi W.
  24. “To make living with a rare disease more bearable, I focus on the small things that bring me joy. This includes hugging my children, collecting sea glass, and a great cup of coffee at my favorite cafe or journaling to express my feelings. Another helpful activity to make me feel better is helping others. That always brings me happiness.” – Lisa D.

Do you live with or care for someone with a rare disease? What’s one ‘small’ but significant thing you do that makes life easier? Let us know in the comments below.

Originally published: February 22, 2019
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