Along with the pain and illness of having autoimmune diseases such as Lupus, Mixed Connective Tissue Disease, Myofascial Pain Syndrome, Sjogrens, Fibromyalgia, Diabetes, and dozens of others; there is the pain, scorn and hurtful things family, friends, colleagues and even strangers say and do to people with these diseases.
First off, most of these diseases are called “invisible” diseases. They are not readily visible to outsiders. Other people cannot see the disease and often even doctors can’t find definitive tests to diagnose them. Many are simply diagnosed through a combination of symptoms and common denominators in tests that are not necessarily unique to that one disease. So sometimes certain doctors don’t “see” the disease unless you have had the right tests, and family and friends don’t see the disease because you are suffering internally.
Over the years some diseases, such as Fibromyalgia; have had their existence question. Only recently have scientists been able to prove the actual existence of Fibromyalgia through brain function tests. Therefore there are many people, including doctors, that still don’t believe it is a real disease. Many of those take it upon themselves to berate people diagnosed with the disease as fakers or hypochondriacs looking for attention. (If they were hypochondriacs, they would still need medical attention and deserve compassion.)
To give an idea of some of the things said, I’ve collected comments from a support group of people afflicted with autoimmune diseases. The hurtful things they’ve been told range widely. Occasionally, it makes them mad; but more often it brings them to tears. Men and women alike are submitted to this kind of verbal abuse; anyone that is afflicted with one of these invisible diseases is subjected to these thoughtless, harsh remarks;
“You sleep too much” ; “You don’t want to go anywhere anymore”; “All you do is lie around” ; “If you’d get up you would feel better.” ; “Take vitamins” or Echinacea, vitamin C, D, coffee, eat healthy, orange juice, etc (most of these things are NOT to be taken by autoimmune patients); “Be the mom you used to be”; “You have given up”;
Then it starts to get really painful;
“It’s all in your head”; “Other people worse off than you still work”; “You are lazy and a quitter, and that’s why you can’t do as much as before.”; From a financial aid person at a college; “why do you want to go to school when you are just going to die?”; “Snap out of it!”; “Get out of that handicapped parking space immediately!!”; “but you look so good”; “next excuse please.”; “Mom I have decided not to come see you this summer because I cannot take the drama of you being sick, so call me when you get over your drama.”; “Why don’t you get off your lazy, fat ass and do something.”
Some just fall under the category of the clueless and good riddance;
“The problem with patients today is they do a little research on the internet and think they are Dr.s, I think you need to find another Rheumatologist.”; “your illness isn’t that serious, you just use it as an excuse not to have sex.”; “Mom is in ICU, she does it for attention.”; “You need to get a life”; “you should really consider seeing a shrink”; “You should start dating”;
The rest are sort of incredulous, they had to be shared because they were so surprising;
“You know what’s really wrong with you is all that Diet soda you drink.”; “You should have gotten married when you were younger, now no one will want you.”; “Now don’t you wish you stayed married to your ex?”; “Why haven’t you quit working since you don’t have much longer to live?”; “Is Lupus even real?”; “When are you going to go to a doctor and get rid of that damn rash?”; “God, What is wrong with your face?”; “I don’t want to hear it because all you do it complain.”; “You don’t need to go to the doctor for every little thing”; “you’re so lucky, it could be so much worse”; “do you think if you got HIV it would counteract the Lupus?”; “You are lucky, you are living the life of luxury and don’t have to work anymore. ” (on disability, broke and sick all the time?); “WOW, a blood transfusion, you must feel good getting all that fresh blood”; “do you know who the blood came from”; “do you think they screened the blood right? You’d hate to come down with something else.”; “you’re so lucky, with all those medications, you don’t have trouble sleeping”; “you’re just a baby”; “You don’t know what real pain is”; “Why do you hurt today when you were fine yesterday?”; “You look healthy enough”; “You don’t look sick”
Sometimes you get direct, repeated attacks, sometimes you overhear comments; sometimes even other parts of your life are attacked. It seems as though your entire life is open season for anything people want to say when you are sick. There is no “politically correct” rules anymore. People say what they want about any aspect of your life. They don’t advise, they judge, criticize, berate. It’s very sad that people go to such lengths to make someone who is already so gravely ill feel even worse. People who are close to them and supposed to care for them, supposed to help them. Yet it happens every day, spouses, children, siblings, parents, friends, family, bosses, coworkers, doctors, nurses, you name it; they do it. It’s hard to know where to turn for support. Here are the last of the phrases shared by the support group;
“You look good”; “Why are you acting this way?”; “You are a complicated person.”; “Well if you dated men you wouldn’t be sick, you are sick because you are gay.”; “Well I think you are just addicted to pain killers and depressed.” (4 advil a day); “There is nothing wrong with you, you just need more fiber”; “You would feel better if you would lose weight”; “She’s not sick, she’s just lazy”; “We were so happy to find out something was really wrong with you, we thought you were being lazy and making excuses.”; “My God, you are such a flake.”; “You need to start looking at nursing homes, no man is going to want you now.”; “God did this to you because you left the church.”; “The sun is good for you, you need to get out more.”; “You don’t look like you are in pain.”; “On the hypochondria scale you would rate a 10”
It doesn’t stop with words either. There is always the trick with making noise when they are trying to rest or take a nap. Purposely coming in the room and slamming things so they wake up. Refusing to let them sit in the more comfortable chair, just because they won’t acknowledge they are in pain. Hiding the crutches or cane. Hiding, flushing, or refusing to let them refill medications. Refusing medical care. Manager’s ordering a supervisor to “start the process to get rid of” an employee with autoimmune diseases. A doctor that yelled at a patient because she asked for the music to be lowered in the exam room because she couldn’t differentiate sounds. People yell at someone using the driving carts at Walmart because they think they don’t need it.
You know what; no one says a word when someone’s kid screams their head off in a restaurant while everyone is trying to have a nice quiet meal. So when did sick people become open season? You don’t know what kind of pain and suffering goes with these diseases; and hopefully you never will. A simple thing my Grandmother used to tell me when I was a child. “Mind your own business. Show some compassion for other people.”