For me, being in my almost twentieth year of having this disease, I have yet to find another illness as disabling and devastating as severe CFIDS/ME. I've met many people over the years with all kinds of disabilities, not one of them is as bad as having severe CFIDS/ME. I've met people in wheelchairs who lead full lives. I've met mentally ill people with full lives. I've met blind and deaf people with full lives. They all travel, get married, have a life. I am the most disabled person in the disabled/elderly apartment building I live in. Everyone else goes out every day. They do a million things, go to classes, social functions. Everything I can't do. Some of them work part time, too. Alot of them like to go on long walks. Basically, not much stops them from having a life. But CFIDS/ME has stopped me for just about twenty years.
Every day with this disease is a new hell. I never know what organ system will be hit on what day or for how long. Will it be cognitive symptoms hitting my brain today? Stomach problems? Allergies? Autoimmune, attacking my spleen or thyroid again? POTS flare? Maybe I won't be able to stand up today? Central nervous system attack with inflamed nerves? Another yeast infection? The fevers, the chills? Oh, the list goes on and on.
The level of fatigue is beyond devastating. It's something you have to experience to believe. Every little task of the day is huge and monumental. Small things that people take for granted every day are so incredibly hard for me to do. I have to rest up between doing anything and then rest again.
This disease is like no other. This isn't something where you can just ignore the symptoms and push on. Try it and it beats you so badly, you might be down for months. This isn't like a broken bone where you can just take a pain pill and still sit at your desk at work. This isn't like being deaf, where you are just missing one sense, but can still compensate and have a life. There is no life with severe CFIDS/ME. It won't let you have one.
I can never make plans because I never know how I'll be. And anytime I do anything normal, I pay for it in spades. And the pain and suffering is never worth it.
Yeah, there are other things people have in life, but this disease destroys your whole world. It takes everything away from you, friends, family, work, school, social activities, religious activities, money since you end up poor cause you can't work anymore, you might lose your home, too. Basically, anything that makes life worth living, this disease takes away. The freedom to choose what you want to do with your life or even what you want to eat or do in a day. Everything is taken away.
So really, in my mind, I haven't found another disease that does all this and still forces you to live while you watch your entire life pass you by and everyone you ever knew goes on with their lives while yours is at a stand still for decades.