Invisible illness is part of the package in our house, where Charcot Marie Tooth Disease, Ehlers-Danlos Syndrome as well as the lovely symptoms of dysautinomia are part of life for us on a daily basis. It’s just how things are, it’s part of our back story.
So this one morning it’s sports day, my son gets up with pain in his shoulder and knee. We work really hard to get him ready for school. At points he can’t bear weight on his leg but by the time we leave (on time I would like to add), he can walk, slowly. I think that it is probably a good idea to deliver him to the school nurse for a hefty dose of pain relief and TLC. My daughter is starting to struggle with fatigue as it’s getting nearer to the end of the week but it is one of her planned half days so she only has to make it through till lunch time.
As I exit the car I can feel eyes on me, a mum, dressed smartly in blue, I know of her but I do not know her name. My focus quickly reverts back to my children particularly the one who needs much support and encouragement to get into school.
On the way out of the office after delivering one child to his place in the line, another to the nurse and the third to a TA, I wander out. It is at this point another lady tells me that a mum (I suspect the one whose eyes burned through me that morning) had expressed her opinions about me quite strongly and vocally as she passed, that I am a poor example to the school, parking on a yellow line for all the children and parents to see.
Parking with a valid disabled parking permit that is.
Quite frankly it tickles me, I find myself chuckling all day. That I am the topic of her annoyance first thing in the morning on the way to school. It’s nice to be so important in someone else’s life, to bother them so much that they will talk about me in such a judgemental and disapproving way. That she was more concerned with me and my children in the morning rather than taking the time to wish her own children a nice day as they walk into school or good luck in their races. As we walked along the path that morning my priorities were the well being of my children, hers were obviously me and my choice of parking spot.
Now I’m not naive, I can see how this mum got caught out. You can not, on first glance, see that we are affected by these conditions. My children are happy and they don’t look sick. I get up every morning paint on my smile and go. There are some days I can not pull up my knickers without dislocating my wrist or I wake up with my ankle joint subluxated and out for days but unless you know me well or spot something braced you probably won’t see these things happening. You will not know that when my husband holds me he sometimes dislocates a rib. You won’t see my children being physically sick because of fatigue or waking in the night in pain. You may not not know that one of my children can not manage full time school or that she is waiting for her shiny pink wheelchair to be delivered just so that we can have family days out again. I have a mask I put on and if I’m honest I like wearing it. My children are just that, children, and get on with it as best they know how for their young years.
Many disabilities are invisible, chronic illness often can’t be seen, mental health issues and grief rest quietly inside people. You don’t know what someone is going through unless you take the time to ask, to get to know their story. If you can’t see it, does it mean that it isn’t real?
The most valuable quality that I have gained out of living every day with Ehlers -Danlos syndrome and Charcot Marie Tooth Disease is not to judge others. I am proud that I am raising my children to accept and celebrate differences. Be it with other children’s achievements in the classroom, their abilities on the sports field or by appearances. Everyone is different and has their own unique strengths, it is important to play to them. I will always try to teach my children not to judge what they do not know and to value people.
Be kind. Always.
I feel your pain Sarah. I too suffer with Charcot Marie Tooth, and was hit by a drunk driver in April causing a lot of issues with my neck and back. Coping with an invisible disease daily is only something that makes us stronger. Others have no idea what we go through on a daily basis. Sometimes I want to wish this pain and suffering on others that's how angry I get. BUT, I don't, I just grin and bare it. HUGS to you and your children Sarah. God Bless
I was asked if I could be 'normal' for a day (whatever that is) what would I do? You know what, I don't know if I would like that, to go back to being me after that would really reinforce how much things are harder for me, and highlight the pain and difficulties. I don't want to do that, I work hard to adapt things and pretend that they aren't there ; ) I would much rather let someone else feel what it is like to walk in my shoes, just for a day! X