People judge, it is just a fact, it is what it is, even when we don’t meant to, we all judge each other all the time. I have found this to be extremely challenging while living with a rare invisible illness. I am now 40 years old, but probably look more like 30-something… and being that I am still somewhat mobile… (I do not need to always use my mobility aids)… if you simply look at me, you will have no idea that I am currently fighting a life-threatening illness.
This has made for very challenging times in my life, not only with friends, family, co-workers, but also with the medical professionals who treat me. I am forced to constantly be a rare disease advocate in nearly all situations in life. You can tall people you have a disease of your metabolism which leaves your body devoid of enough energy to properly sustain life and even your vital organs… but until someone really has a first-hand experience with it, they simply can’t understand. I had a unique experience with a new physical therapist last week for an initial on-boarding assessment my for another round of 6 weeks at-home PT. Like typical, at first he seemed surprised to see I was younger, and up walking and moving around without any assistance, however, within minutes of assessing me, he was able to see the true extent of my situation as I was struggling to complete even the most basic of muscle-strength tests, and massively struggled to complete a six minute walk test… having to stop and lean against the wall to avoid falling down.
Before he left, he actually said how inspired he was by me, because during this brief interaction he could see how hard I was struggling and fighting for my health, and how devastating this invisible illness truly is.
It is hard, there is no doubt, but we all healthy, or chronically ill, have to be our own advocates and know our own limits and be sure we honor those limits in ourselves so other’s will as well.
~Chronically_Unshakable
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