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.
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!
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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… Continue reading The Herdless Zebra: When You’re Too Rare to Fit In with the Zebras
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… Continue reading When Medical Setbacks Change the Face of Your Chronic Illness
Doctors don't always know everything about your disability. Especially when you are rare. Self advocacy is of the utmost importance.
The secondary symptoms of chronic illness- Isolation, Loneliness, Lost Relationships, Depression.
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.
So many people want to pray away the disability, or fix it somehow. People need to understand that sometimes acceptance is the best policy.
Not all disabilities are visible. Thousands of people live their lives with invisible illnesses that can be debilitating, and they deserve validation.