How to Express Medical Severity to Healthy People

Hi everyone 🤍 Over the past few years as my disease has progressed and I have had permanent organ damage that becomes worse during flare ups and regular dysautonomia and CFS which my doctor has explicitly stated to me will likely not be able to get better if they get worse because of the nature of EDS and CFS, it has been difficult for me to express to people or maybe for them to understand the level of danger I might be in if I become medically vulnerable and how quickly that can happen. Some people in my life I think struggle with the trauma of me kind of losing my full independence in these moments as I used to be extremely functional and “successful”. I am 33 and look “healthy” because I have an athletic body type and GI symptoms that keep me from gaining weight. Most people look at me and are jealous of the way I look. That may sound vain but it has happened my whole life and has cut me off from the empathy and understanding from others that any person deserves. The people who work in my office essentially have expressed through their total apathy that they do not care at all about my medical problems though I am in a position I can take as much time off as I need (they don’t seem happy about it when it happens though they can’t say anything legally).

Sorry for the rant, but overall I have been struggling as I recently had to end a friendship because she could not intellectually or realistically understand how limited I am in my condition. She continued to push me physically and mentally in my capacity though I worked to set boundaries and explain my situation to her. I feel she has some issues in her life but she didn’t really acknowledge mine or have sympathy or understanding and would think I was sick because of other things but I was getting more sick because of how much energy our friendship was taking from me. I have a very limited energy budget and it is nothing personal to anyone. I feel like people I meet look for a best friend in me and I do my absolute best but I cannot be in situations with people I believe would leave me medically vulnerable when I have not much time to figure out what to do or how to get help or get help when I might really need it. This has happened before as you can tell and I do not want it to happen again. Thanks so much for taking your time and energy to read this. I am looking for any feedback, personal experiences, funny stories or ideas you guys might have.