There comes a time when you have an invisible illness that you are sick to the back teeth of being told you don’t look ill. It’s even worse when your kids have invisible illnesses and you are told they don’t look ill. They have been seen outside playing so can’t be ill. There are more Children with an invisible illness than you thinks
Problem is with an invisible illness you learn to get on with things and when you can’t get on with things you aren’t normally out and about. But this doesn’t stop the comments.
Earlier this month I was told my daughter doesn’t look ill and is walking around ok. But what this person didn’t see was the hour earlier when she was in huge amounts of pain and right then she’s drugged up to her eye balls on codeine. I don’t want to drug my daughter up, no parent wouyld but needs must if she is to have anytime pain free and to have the luxury of a ‘normal’ life. To be able to do things ‘normal’ 12 year olds do.
People just don’t think that at your worst when you really do look ill that you are sat at home and unable to go out to show the world how ill you look. Because people don’t see this then you can’t be ill.
Where children are concerned this ignorance and it is sheer ignorance is unacceptable. It is so upsetting to watch the tears well up in your child’s eyes when somebody says there is nothing wrong with them.
Then there was last week. Another person said she was fine because she was smiling. This came from a person who knows about her illnesses and who gives her adult doses of codeine at times of need when I’m not there to give it to her.
The Girl usually walks unaided and 99% of the time with a slight limp. People who see her every day don’t notice it because she limps so often. It’s strangers who notice it more as those around her have become accustomed to it. But last week she was on crutches. Clearly she was not ‘fine’, she wouldn’t be on crutches if everything was fine. This person can’t see what they have said is wrong. It doesn’t matter to them that my daughter was crushed by that off the cuff remark. It doesn’t matter to them that my heart broke again because my child was upset.
I take copious amounts of pain killers too. To do normal things with an invisible illness like get out of bed and get dressed in a morning. To do normal things like get my children ready for school and go out to work to provide for them.
Family activities are getting fewer and fewer. Just look how many times of late I’ve linked up with Country Kids. We used to do plenty of things but lately living with an invisible illness has meant we’ve done nothing. None of us are well enough to go for a simple walk on the beach even of late. We did go for a short walk on the beach last Thursday but I then spent 2 days trying to build my spoons back up.
Come Monday when I’d built those spoons back up you could see people looking and thinking nothing is wrong. Even those who know there are issues think nothing is wrong.
But those people never see what happens behind closed doors. Perhaps it’s time society thought a little more before they spoke.