A Invisible illness is a illness that you have that can’t be seen, MS, SJorden’s, Cluster headaches, migraine headaches, gastroparesis, Huntington’s disease ,fibromyalgia,chronic fatigue, lupus,reflex sympathetic Dystrophy, Myalgic Encephalomuelitis, Crohn’s disease, cystic fibrosis, RA, Prinz Metals Variant Arigina, Asthma, Hypogamma-globulinemia, PTSD, concussion, post concussion syndrome, Hep C, Chronic Back injury, Diabetes, cancer, autonomic neuropathy, autonomic small tissue neuropathy, autonomic dysfunction, Autoimmune disease of the inner ear, AIED, Menieres, So many there isn’t enough pages to list all the invisible illnesses.
The key to Invisible Illness is yet the hardest thing to do is diagnose a invisible illness, but the sooner you get diagnosis, get the right treatment, most invisible illnesses don’t have a cure. just comfort measures.
I have a invisible illness, several to be exact and I can tell you the hardest thing is having to defend your illness to everyone, they don’t believe you, they think you are doing it for attention. Believe me I would do anything to have my old life back, be able to work, go for a walk, hike, go have vacations, go to the mail box, walk in a line, Sleep! Sleep is so important and as a patient with invisible illnesses, I feel like I can sleep all the time, my brain is working on over time every day, just to get out of bed, just to do my hair..
I call it payback, if I go do something fun, the energy it takes to get ready and get somewhere be normal for a few minutes and then go home and crash, the pay back! the more stress the more pay back. It can take hours to get ready just for a simple dinner but I can sleep 14 hours after. Any Dr appointments wipe me out, specially if testing is to be done. So I plan. everything has to be planned, If I can make dinner I have to make it early so I am not sleeping when it’s dinner time, If I clean up the laundry room, I have to sleep after, I will do 1 load of laundry and pay.
When you have to defend your illness, its hurts inside, when your family doesn’t believe you it breaks your heart, your always on the defense. Your friends disappear, family disappears whether its because they can’t handle it or because they don’t want to. That’s the killer. You become the scape goat for family issues because your crazy. Its a awful place to be, your not only alone but your alone with your disease, not knowing what tomorrow may bring or if tomorrow will come or if you even want it to. Having a invisible illness F g sucks! more bad days than good, never being able to make plans.
So If you take anything from this post today is we are telling the truth, we are sick, we need your support not your drama. We don’t need to explain our illness or defend it and if you can’t be supportive then let the person go. Just be honest, Just tell the person, write them a letter, e mail them, so they don’t have a false representation of what your intentions are. That’s kinder to a person than to hang on and be a fake friend. Or family member. Every Dr that I talk to says the same thing, the hardest thing is the lack of support from family and friends and there not believed. Those are the words of the Doctors, it’s the highest complaint. Very Sad, that amongst the illness we don’t get the recognition that we are even sick let alone support from the people in your life. So if you are a family member of someone with invisible illnesses, learn about the disease, learn how you can help, not behind the patients back but from the patient “What will make your life easier”? Its not science, it doesn’t cost you anything, but be there! Remember we all die some day, some have a longer illness or life than others, so instead of nit picking, being abusive verbally, be supportive. Nothing hurts worse then being sick alone.