As much as I find it awesome when I see someone shares something about one of the diseases or disorders I have, when I read how much they are accomplishing in the publics eye it makes my heart hurt a little. I am not the same as the person you have heard about. I live with one similar disease and that disease affects me vastly different.
I can not do particular movements because of the preexisting damage to my cartilage, tendons, ligaments, and blood vessels. This is only due to one of my illnesses. I am vague most of the time trying to explain my experience, I have found the broad term of being chronically ill can help others to understand.
However, I am not like everyone else that has, Ehlers danlos syndrome, dysmotility, postural orthostatic tachycardia, chronic migraines, perniosis, mast cell disease, cancers, pancreatitis, GERD… etc… Simply because I have many diseases/disorders my body and my experience are different. Please don’t compare me to someone you know that may have one or two of the things I have.
There are different spectrums of those affected, not everyone with EDS dislocates everyday like I do, not everyone with EDS can have kids (I will never be a mom), not everyone with dysmotility can eat everything out in front of them (there is a large list of foods for me to avoid), not everyone with POTS blacks out, not everyone with mast cell disease goes into anaphylaxis, the list could and would take all day to type or talk about. Some people are so mildly affected they can continue to do their everyday normie life with no illness interruptions. Where others are permanently discharged from the normie life style.
The point is do not lump me in with one or two people you have heard of that have any of what I have. My experience is mine and mine alone. I have never met another person on the internet nor in person that has all that I have, and I possibly never will.
Please be understanding that my case is different for the fact I am deteriorating, not everyone with EDS, POTS, MCAS, and everything else that ails me will end up like me. My diseases are not on the surface unless I rash, dislocate, or begin to vomit because my throat is backing up (literally backing up, and will not allow me to eat), EDS is ravaging my body, not everyone with EDS will be like this.
Seeing people with similar diseases/disorders do things I can not do because it could end me makes me frustrated, I am happy they can experience it and happy they are not like me. It hurts when someone near and dear to you says, “I know someone with EDS to and she has children, that means you can do it to.” “Stop limiting yourself, you can do whatever you put your mind to.” I can simply put on my normie mask and agree, but the broken part of me that looks for understanding, yet feels lost and confused as to the lack of understanding. The lack of empathy, the lack of tact when life is ripped away from you by illness.
Understanding anyone with chronic illness means you must be open-minded. You must know that someone who is chronically ill is trying the best they can. They maybe stuck in depression and feeling abandoned by their loved ones. Don’t give up on them they still need someone to show them someone cares. Not everyone who is chronically ill gets to the place of acceptance. Don’t rush someone’s journey to get them through the grieving process, they need to come to their own realizations themselves.
Everyone’s disease is different, just like the same diseases can affect everyone differently. Please keep and open mind always. Please keep your heart open for those of your loved ones who are dealing with illness. Sometimes just offering an ear to hear can help. “To listen is to love.” -Nathan W. Bingham
Please feel free to check out my previous blog post about “Normie Guilt,” here https://annawerrunblog.wordpress.com/2017/06/04/normie-guilt/