A Letter To My Younger Self About the Mysterious Symptoms That Will Change Your Life

If you could give your younger self any advice, what would it be? A letter to my younger self about what to expect growing up with a rare, undiagnosed, chronic illness, and what to do differently to improve my life.

My wheelchair is not a prison!

This is a wonderful post written by Nina Childish! As I sit here anxiously awaiting the arrival of my new power chair I can 100% relate!! Please click on the post below to check out her blog!

Nina Childish

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple…

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The Herdless Zebra: When You’re Too Rare to Fit In with the Zebras

So we know that Zebras are rare, but what happens to those Zebras who are so rare that the other Zebras don't even know who they are? I've been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren't always the best at understanding…

When Medical Setbacks Change the Face of Your Chronic Illness

The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each…

The Importance of Being Your Own Advocate: You are Your Best Doctor

Doctors don't always know everything about your disability. Especially when you are rare. Self advocacy is of the utmost importance.

Sometimes the Loneliness Hurts Worse than the Pain

The secondary symptoms of chronic illness- Isolation, Loneliness, Lost Relationships, Depression.

Don’t Let Your Job Define You

Just because you cannot work due to your disability does not mean you are worthless. Everyone has a different path, and everyone has a purpose.

Please Stop Trying to Fix My Disability

So many people want to pray away the disability, or fix it somehow. People need to understand that sometimes acceptance is the best policy.

The Hurt That’s Caused When People Doubt Your Disability

Not all disabilities are visible. Thousands of people live their lives with invisible illnesses that can be debilitating, and they deserve validation.