Yesterday I had a someone I don’t know extremely well, who is dealing with a chronic autoimmune, comment about how they appreciated that I was always comfortable talking about being sick, and how that was inspiring. I felt a little ashamed because that is something I struggle with. I was just told the day before, by someone who had known me for quite some time, that they had no idea I was sick. At other times I feel I share too much, go on and on. If someone asks me how I am, I do my best to answer fine. If someone asks me how I am feeling today, and I know they really want to KNOW (or maybe even need to know like my boss or husband), I have a harder time, Especially if I told that person for the last four days that I had a migraine, and things have gotten worse and not better.
I made this page specifically so I can share the worst of my illness and struggles, but I hardly use it. Instead my very worst days come and pass without most people knowing. If they last for weeks, months, maybe they get a posting here. Perhaps a Facebook post so people know why I have stopped communicating and don’t take it personally, but I am more likely to just withdraw like I have done over the last couple of years. I know I am not alone in this. If those of us with chronic pain and illness talked about ALL of symptoms we couldn’t help but sound like we were complaining, even if we did nothing but list them. We would totally bore ourselves and everyone else around us. Sometimes I feel like I do this even though I try so hard to avoid it.
On the other side of the coin, we do have limitations, and limits on energy, and our friends and family and co-workers won’t understand this if we don’t communicate. It’s particularly hard for those with invisible illnesses because we can appear healthy and most of us WANT to appear to healthy. We want people we love understand we are sick, but not think of us as sick.
I have a friend with the same illness who asked her mother for a cane as a gift, when she saw her mother gifted her brother a lovely cane. Her mother said “What do you need a cane for?”. What do you need a cane for? I hear those words all the time now, in my head, every time some relative says something similar to me. We talked about it, it’s our own fault, if we complained more, they would understand WHY we needed a cane. We don’t want to complain more. We want to live more. We don’t need to dwell in the negative.
There is a balance. Helping to create universal awareness of chronic illness. Helping myself by creating awareness in my world of my own illness and chronic pain. Just like there is working hard, and doing all we can, and working too hard and doing too much. I am hoping to find that balance between sharing enough, and sharing too much. Some days I know I cross too much in one direction, other days I probably don’t share nearly enough and some things just feel too heavy to share. I am sure there are two of you or so who get the bulk of my “sharing” and instead of sorry I will say “thank you”.
I know I am not the only one who walks this line. So this is to let you know your not alone. I haven’t found the balance yet, maybe I won’t, but it’s one of those things I can keep working on until I get it right.