Invisible Illness
What aspects of your rare disease are invisible to others?
I suffer from Myasthenia Gravis (rare) and Degenerative Cervical Myelopathy. I am weak and easily fatigued as well as handicapped with movement.
I have prurigo nodularis, a skin condition that is invisible when controlled by medication, but very visible when flaring.
During the 30 years before diagnosis when my disease was constantly visible, I was belittled and shamed by doctors, nurses, other medical professionals not to mention the public! I was forced to wear long sleeved and long legged clothing covering as much as possible of my affected skin. It was demeaning and damaged me psychologically.
After dx and rx which miraculously worked, my skin cleared and disease became invisible but I still felt shame in baring any part of my body. It has been so ingrained I am embarrased to wear swimsuit or short sleeves and short skirts and pants.
Gradually I am getting better but summertime and winter vacations are emotionally a challenge for me., I am glad that both your body and mind are healing. It is hard to shed those things that the world embeds in us. But we deserve so much better. Remember that you are beautiful, and you are worthy<3 - Warmly, Donna (Team Member)
None really. When I get sick with an infection I go to the ER and usually have to be admitted for pneumonia.
Others can’t see that because people, not even family come to see me other than my husband., it must be hard when people just don't seem to understand what you deal with living with a rare disease.
Gentle Hugs, Erin, Team Member.
All of them are invisible if I am in a non-reactive state.
, does that make it challenging for you to get support and empathy? I sure hope not, but I know it's sometimes hard for others to try to relate to what you are going through when they can't "see" your symptoms. I mean, it would be nice if folks just believed you when you said you were feeling cruddy, but I know it doesn't always work that way.
Best, Erin, Team Member.yes, it is hard to get respect especially from biological family members. One is a nurse and would test my reality by deliberately exposing me to foods or other substances that I am sensitive to or even get anaphylaxis from. She thought it was funny to put me through the distress and watch me use my Epi.
