Tips for Coping with Rare Disease

July 20, 2013

Though there are over 7,000 rare diseases, there is one thing that all rare disease patients and families have in common- the need to cope with whatever challenges their disease throws their way. This is something that I have seen in my own life and I know that everyone copes differently.

I am the fourth generation in my family to have a hereditary colon cancer disease. Not only have I had to cope with my own diagnosis of Gardner Syndrome (GS), I have witnessed my dad battle Familial Adenomatous Polyposis (FAP) Syndrome, have lost two relatives to a hereditary colon cancer disease in my lifetime, and have also seen my brother diagnosed with GS. Luckily my brother and I have been in “remission” for nearly eight years. Though at times, I still struggle with knowing that I have about a 99.9% risk of colon cancer. I feel very blessed to be in remission. But I still struggle with worrying about what my future holds at times.

A little over a year ago, I turned to blogging. For almost eight years, I had a hard time coping and accepting my disease. I knew that GS had a purpose in my life. But it wasn’t until I started blogging, that I started to see my disease as a gift.

Somewhere between treatments, surgeries, therapies, waiting for test results, and setbacks, we have to find the strength to keep fighting. Living with a rare disease is an ongoing battle- one that many will end up fighting for their entire life. So how can we cope with this challenge?

Here are some suggestions for ways to cope:
• Support Groups. Find a support group for people who have your disease. With the growing popularity of social media sites such as Facebook and other support based websites such as Inspire and MDJunction, this is becoming easier.
• Talking About It. Confiding in close friends and family members can be a helpful way to cope.
• Writing. Whether you blog, or just choose to keep a private journal, writing can help you get your feelings out.
• Exercise. It can help reduce stress you may be experiencing.
• Prayer/Meditation. For those who practice a religion, prayer or other forms of meditation could be helpful for coping.

These are just a few examples. Try a few different activities and see what works best for you.

About the Author

Alyssa Zeigler is a recent college graduate from Western Washington University. She has Gardner’s syndrome and comes from a family that has a history of hereditary colon cancer diseases. She has a degree in psychology and hopes to help people who are living with rare diseases. In her free time, she likes photography, knitting, playing the ukulele, spending time with friends, and writing. Alyssa is the author of the memoir, The Waves of Life: Going Against the Tide and the blog Learning to Live by Defying the Odds, and the creator of rareACTION.

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