This Is What It Means to Love Someone With a Rare Disorder


Today is Rare Disease Day, and from families to doctors to organizations, we’re helping spread the world about rare conditions, disorders and diseases.

Yes, you can donate money and hit the share button on articles like this, but one of the easiest things you can do to help someone with a rare disease is give them your love and support.

The Mighty teamed up with the Muscular Dystrophy Association (MDA) to ask their community what it means to love someone with a rare disorder.

Here’s what they had to say:

1. “It means you love them.” —Robert Peter Leali

Blank love message note with hearts and twine

2. “Staying one step ahead of the disease.” —Lynda Joy Lorenson

3. “It means showing respect for someone who’s fighting for their life.” —Jennifer Paulson

4. “It means learning all you can and doing everything you can while educating everyone that you can.” —Amber Zylla

Concentric Circles Forming In Still Water

5. “Overcoming frustrations, being resilient… and hoping for equal acceptance by society without discrimination.” —Shiranthi Kodagoda Peiris

6. “Living with someone with a rare disease is not only one of the most painful experiences you will ever go through in your life but also the most beautiful thing in the world because you see a person at their most vulnerable. You see strength, hope, love, appreciation and kindness… Worldly things don’t matter. You wake up appreciating one more day, one more ‘I love you,’ one more touch. When you live with someone who is ill, every moment matters.” —Nicole DeSimone Grant

Chamomilla

7. “It means fight, love, support, strength wherever you can get it from. From within or from others.” —Amy Friend Willoughby

8. “Give them dignity. Do not look at them as if they have disease but as a human being.” —Mary Tashjian

Retro sky with clouds

9. “You pray for good doctors and caregivers who might put themselves in their patient’s place.” —Aimee Mattson

10. “To me it means, not knowing if this is the last time you give your daddy a kiss and hug goodbye. Not knowing if it’s going to be the last time you get to hear him say the words, ‘I love you.’ Not knowing if he’ll be able to walk you down the aisle … To me it’s not knowing.” —Holley Lewis

11. “It means feeling bad that you hope someone famous gets the diagnosis so people will want to help find a cure.” —Kathy Beck

12. “It means trying to stay positive when the future is so bleak for a child I love. It means to prepare to battle against something so unforgiving it is heartbreaking. It means finding happiness and strength to move forward in the race to establish effective treatment and the cure. It means loving my grandson to the moon and back always!” —Linda Wollam

The Sun Rising Over Mt. Oakan. Hokkaido, Japan

13. “New layers of both grief and optimism.” —Louise Haberfield

14. “It means many sleepless nights, stress to a level you never new existed. It means blood, sweat and tears. It means the voice that needs to be heard. Finally it means love.” —Alisha Powers

15. “It is not easy, but we have to keep the faith!” —Deborah Bishop Clark

16. “Have patience, understanding and be thankful you got another day with your loved one.” —Alana Stevens

Pure white snowdrops against a dark background

17. “Hold them close every day because tomorrow is not promised.” —Carly Elizabeth

18. “Believe.” —Melissa Dillon

19. “Unconditional love forever.” —Peggy B Wolford

hand draw heart on sand beach valentine concept

Images via ThinkStock

Some responses have been edited for clarity and brevity


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