The other day someone who I haven’t seen in a while saw me with my crutch. They have seen me with it many times as I am never in public without either my crutch or my wheelchair, and they have heard the whole story before too. But people forget, or they don’t digest the important part of the info, or whatever other reason, …and truly, that is ok. We all forget things and we all say stupid things when we forget and others can tell that we did. However, for these reasons and many more, chronic illness scares some people, or they don’t know what to with us or how to treat us and so their comments can not only come across as stupid or ignorant but they can hurt deeply as well. This person saw me and said hi with a big hug, then looked at my crutch with shock and his comment was to ask me if I am faking it to get attention!
Part of me was shocked of course but the other part of me is so used to it by now, both in my first hand experiences but also through the thousands of times in the last ten months that I have heard a version of this from others in the chronic and/or invisible illness community, that I am learning that this is just what happens in chromic illness life. His comment wasn’t funny but I am learning to not let it get to me, …but when it happens more than once or the other person simply no longer remembers how to be “normal” with me, then I am shocked to say that I am becoming less devastated by it and am able to let it go like water off a duck’s back…
Don’t get me wrong, it is frustrating and it does hurt, but I have realised that my illness pushes people to their poles. Those who are not interested or can’t cope (regardless of the reasoning) create a distance between us that was not there before, and those who are able to take my illness in their stride create a closer bond. People have clearly become more safe than they ever were, …or less safe, and it is being defined by their responses to my illness. Another person asked me today: “how’s your leg?” …um… I have explained to this person too many times that it is not my leg but every inch of my body that is broken so if they haven’t processed that, or digested that, or understood that yet, then they probably never will. I am learning how to respond to that, which is a discussion for another day.
Again, please don’t get me wrong, …I don’t expect people to remember everything, or even most of anything. I took weeks to be able to say Ehlers-Danlos even though since DDay (Diagnosis Day) I have said it almost every day and I see it in print many dozens of times every day, …whether through paperwork, medical appointments, online support networks that I am involved in or people asking me questions. But even if it wasn’t a mouthful I would still not expect the vast majority of people who I know to remember what the name is or most of the details. But truly, if they don’t understand the basics; that this affects my entire body and that I am in constant pain all the time and that the the things that I say I can’t do I genuinely can’t do …then they aren’t “seeing” me as I am, …all of me. When they see me and tell me not to worry I will get better soon, or ask me for the seventeenth time how my leg is going then I’m sorry, but they really don’t want to know how I really am. And this puts a wall between us.
The irony is that I don’t want to be defined by Mah Eeeds. I am not embarrassed and truly, anyone can ask me anything. But that is not the same as me wanting to talk about it all the time, and the last thing that I want is for it to be the main thing that we talk about. I would love my friends to be safe enough for me to cry on their shoulder when I need to or for me to tell them of a frustration or whatever, but for the most part I just want to be me as I am. I love it when people ask a completely normal “how are you?” and I can answer that I am fine, or not so fine, or whatever and then the next sentence is a completely different topic… like everyone else does. But I also deeply appreciate the friend a few weeks ago who sidled up beside me and put her arms around me and whispered in my ear “you aren’t ok today are you?” and she was spot on. I was fine when I arrived but had gone down hill quickly and was now in such bad shape that I couldn’t tell. I hadn’t dressed warmly enough and the cold was causing my muscles to spasm and sap my energy, and I was in such bad shape that the Brain Frog was blinding my ability to tell. I have only known her a few months and yet she could see and jumped to my rescue. Truly, I don’t expect everyone to be that insightful but if all my friends were the complete opposite and can’t even remember that it is my whole body that is affected then how can I feel safe when I am in public and go beyond my boundaries?
This morning I read this wonderful article on losing friends because of chronic illness and I spent the entire article nodding my head. I have lost more friends in the last ten months since diagnosis than the friends that I have truly kept. If someone had told me that a year ago I would not have believed them for a second. What shocked me even more than how many friends I would lose was the rate at which they fell away and the cruelty of people who I had always thought were wonderful. I spent a lot of time very angry, I was in a ton of physical pain and frustration and had so much to process and digest and now this on top was crippling to my soul. But now that I am somewhat used to it, and have gained a handful of AMAZING friends who fell into the category of people who not only did not run away and didn’t hurt me, but also who treated me with a combination of complete normalcy, and a healthy handful of interest and questions, has grown. My public world has expanded as I have taken on a role of creating awareness and understanding, but my personal world has shrunk to about a quarter of what it was! I am pleasantly unsurprised by some of whom fit into that safe category, and pleasantly surprised by others who have chosen to move closer rather than run away from me or attack me. But all three quarters of those who are running away have surprised me.
I am sure that it sounds awful but the sorting of the wheat from the chaff has been a blessing to me in the long run, and I am actually thankful that I am surrounded by a handful of wheat. The amazing goodness of some people is quite amazing and I get to have some of those angels as friends…