Something that helped me with people who refused to understand my chronic illness, which is EDS and the comorbidities that come along with it, Is to make sure I understand for myself what boundaries I need to feel safe and comfortable with people, and then to state those boundaries clearly to people so that they know there is a threshold that I will not tolerate them crossing. Once boundaries have been clearly stated, if they get crossed I am done. No second chances, no questions, no arguments, get out. That’s my policy, and it’s not fun to have to uphold those boundaries but they are there for my safety and my health and if the person understood the consequences and cared more about how they felt in the situation than about my health and safety then they are not people that I want in my life. There are some people that I trust to talk about my illness with that I know will understand. There are people who I do not trust to talk about my illness because I know that they will try to create some plan to fix it so that they don’t have to care about it anymore. For those people I tell them, clearly and with no uncertain terms, that they are not welcome to comment on my illness and that if they do they will not be welcome in my life anymore. I do not owe anybody any kind of explanation or any of my time or very limited energy in order to pacify their anxiety about my health. That’s not my goddamn problem and if they don’t want to hear or respect that, they can leave.

That level of cutting decisiveness is not easy and it’s not comfortable but it did end up being what was necessary for me. You will find your own boundaries and systems that work for you. They may be significantly more permissive than mine, they may be more harsh than mine. Either way do what makes you safe and healthy. Because when it comes to chronic illness, we do not have the energy to waste on people who will not respect our boundaries.