Misunderstandings about being chronically ill.
We already know it in the meantime, if people don't 'see' you're sick, you'll soon be labeled as, lazy, a profiteor or a postor. Being chronically and invisibly ill, is living with a condition that you fight for every day and often has little to nothing to do against. That's why I'd like to raise a few misunderstandings.
Medication:
Medication is often not a miracle cure for chronically ill patients. It is certainly not a cure, it only helps with relieving symptoms. I have also refused to take certain medications, not because I don't want to get better, but because they often have other side effects or because they have already been proven not to help. It's also terribly annoying, certain medications really need to be taken at the same time. So I have medication in the morning, which I have to take around the same hour every day.
Everything should be tried once:
Besides medication, many people think we should try everything to get better. from hypnosis, to accupuncture, diet or pain clinic. But it's not that simple, and alternates are sometimes worse than one estimates. If I had to heal by hypnosis, I would ask me to get rid of my chocolate addiction -) Many times we've tried a lot. Various diet,kiné, physiotherapy, osteopathy,. and it costs bombs full of money. Much is barely refunded to non-refundable and often we already have crab with our benefit, to survive in addition to all the hospital bills and medical costs.
We have to look bad:
I'm still trying to be independent. But many think we have to sit in a wheelchair completely abused to be really sick. Sorry, I'm 30 years old and although I'm beginning to feel that I need a stool for certain distances, I try to postpone this for as long as possible. The thing about chronically ill, you'll never see us when we're just on our own, we're invisibly ill. No one sees when it really doesn't work, we'd rather not buy it. But there are times when we are crying in pain, where the pain, we are urgently absorbed. Sometimes I sink through my legs and my husband doesn't know, because I don't tell. We try to live without you seeing that it has actually taken over a part of our lives and is gradually destroyed.
We always have to take into account you:
It's friendly, but no, mine, you don't have to 'take into account' me or my situation. I decide if I follow or not. We can compromise or just agree on certain issues. I'm just asking for some understanding and compassion. If you want to hike through the mountains, I'll be waiting for you at home with a hot chocolate milk and a nice bite to eat. If you take a few pictures of the view, I enjoy that too.
Het is al iets dat we niet de enigen zijn die met hetzelfde worstelen....