Invisible Illness
What aspects of your rare disease are invisible to others?
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.
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.
Fatigue and immune deficiency
, oh, goodness! And fatigue can be so hard to deal with day after day. It sure would be nice if people could "see" how exhausted you are. And immune deficiency can be quite dangerous (as you well know), so it would be helpful if others could be aware or, at the very least, just practice some good public health practices like covering coughs/sneezes, staying home when sick or masking up, washing/disinfecting hands frequently, etc. I hope you have been able to avoid colds and viruses this winter!
Best, Erin, Team Member.
