Invisible Illness
What aspects of your rare disease are invisible to others?
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.
I don't know
I have CVID an Celiac,and Hashimotos
no they ignore the celiac and Hashimotos,sometimes CVID. It really difficult in a rural area to get treatment of any of my diseases. I travel 3 hours one way for CVID treatment. Hashimotos is just treated with medication for hypothyroidism , good grief! I mean, I get that you live in an area where getting complex medical care may be a challenge, but, yikes! You deserve better than that.
Best, Erin, Team Member.
