A few weeks ago I was speaking to someone. I complimented his flawless skin. (I have PCOS so my skin texture has never been what I desire.) He told me to get my doctor to prescribe me Doxycycline. I laughed and told him I've been on doxy for about 6 months for Lyme, as it is the only thing that gives me relief from my debilitating migraines. He looked at me so confused and said I should take half the dose of what I'm taking to help my skin. I'm here thinking, "what is it that he doesn't understand?" My skin at this point is the least of my worries. My brain swelling is the thing I would like to get rid of especially since it's been 11 year with this symptom. I told him about this issue and he was pretty much just like, "um oh okay." Like yes, I am aware you have absolutely no idea what I am talking about, which is fine, but at the same time the way people dismiss us never gets easier.
I titled this PTSD & Lyme because I feel as if every time I speak to someone who doesn't get it, which all sufferers and their caretakers know, are many, I go into fight or flight mode. My heart rate goes up and I want to just yell and tell them the whole story of what I've been through. It takes me back to when I was at my worst and I feel as though I relive those past experiences. Also every time I post about Lyme in any way here comes someone to tell me that I'll be fine soon and to not worry as if I haven't been dealing with this for over a decade. They seem to not understand it's not just the illness we are dealing with, it's the depression of losing your past self, the isolation of not being able to do as much as you once did, perhaps losing friends or even family or your spouse. The constant gaslighting by medical staff and the constant unknown of, "will I ever get better?" (Lyme & co infections are very complex to treat and we are basically guinea pigs trying multiple things) I understand this is one of those illnesses that you don't get it until you get it but I'm sure many of you understand after a while I'm ready to go the fuck off on anyone who questions, or denies my experience.
I don't know what my advice is in dealing with these people since they seem to be all around us but at least this community has given me a sense of comfort knowing I can turn to them and reach out anytime. The Lyme community has become my family. While my life has changed in ways I have never wanted it to, because honestly I wouldn't wish this suffering on anyone, it has given me a sense of purpose in life and for that I'm grateful. But, if you are reading this and you are not in this community in anyway please check yourself when denying someone else's experience. You don't know what anyone has been through. You don't know their full journey. You don't see them when they are suffering behind closed doors. People with chronic illness and chronic pain are the greatest at masking pain and symptoms because we would be sent to psychiatry if we screamed and yelled all day about the agony we are in.