Living with it, when it is invisible, requires a certain amount diplomatic skill, and, self restraint. Dr. Sharma mentions giving the common greeting of “you look great” may rub the chronically ill person the wrong way. It could. But, after the first year, you just start saying, “thanks.” If they are lucky. If they are not so lucky, you are on day 3 of Prednisone and Levaquin, can’t remember the last time you slept, and, you not so politely inform them that they lack the requisite observational powers to know their posterior from an orifice in the earth.
However, as anyone who does not look sick knows, the usual response is a smile, followed by a cough, and ”I have good days, and bad.” But, it seems they never hear that part. Does it?
When You Feel Disabled But Look All Right
Vijai P. Sharma, Ph.D
People who have an invisible illness may at times wish others could see how much they’re really hurting inside. During those moments even a well intended comment, “You look great!” may rub them the wrong way.
People who are visibly impaired or in pain may at times feel everybody is watching them with amusement or pity. They often struggle with feelings of shame or embarrassment. During those moments they may not even want to go out in public, visit friends and family, or want anyone to visit them.
Most people with chronically a severe and disabling condition have major work to do with regard to how they feel about themselves and how they should manage their relationship with others.
Properly sorting out their feelings related to self and others can make a big difference in their ability to cope with their illness and enjoy a better quality of life.
Here are some of the problematic thoughts and feelings related to self:
“I am becoming unattractive (or too fat or too skinny)”
“As I get sicker, I will lose my… (partner, children, friends or family)”
“Why would anyone want to come around me?”
“I am useless and a burden to them (I am of no help to my family, don’t earn a single cent and cost too much, etc).”
“I have totally lost control over my life.”
Here are some of the problematic thoughts and feelings related to others:
“I must explain or defend my condition or justify my limitations/disability to others”
“In their head, they really think I brought it (my illness) upon myself”
“When they look at how fat I look now, they think I sit all day, do nothing and eating all the time.”
“They don’t understand (or don’t want to understand) what I go through every day.”
“My doctor thinks I am making too much of my symptoms (or doesn’t take my concerns seriously or will get upset with me).”
Be absolutely clear about one thing: you are not responsible for causing your illness, but you are one hundred percent responsible for what you do with it.
Despite long moments of pain and discomfort, you can have moments of joy, pride and happiness.
The increase in your symptoms despite treatment and self-care does not amount to losing total control over your life. Take an inventory of all the things over which you can exercise control even now. For example, you have lot of control over how you think about yourself and your limitations and how you feel about others.
Don’t feel compelled to defend your inability to function as everyone does. What they think about you can’t directly hurt you. But, getting upset about what you think they’re really thinking about you can directly hurt you. Even if someone says something unkind to you out loud, allow yourself to get annoyed, but not angry or depressed. If you do get angry or depressed, disengage from those emotions right away.
Think about what you need to do to reach out to more people and make new friends.
It is more empowering to say to yourself, “I am strong and I can handle it” than “I am weak. I can’t through this ever again.”
Leave no room in your heart for envy, jealousy or self-pity. Such thoughts occur with regularity to even the most altruistic people. Smile at these thoughts and let them pass without reacting to them. Keep the emotion of love alive and green. Love the whole world and some people will respond accordingly.
The moment you begin to feel sad, think of others having fun and good times and share their joy. When you can smile and feel happy seeing others happy and smiling, you are tapping into a powerful source of unending joy. When you see bad news on TV or read in the paper about people hurting and suffering, don’t let that turn into your own sorrow, pray for them and wish them well, instead.
In the final analysis, others really can’t make you feel worthy or worthless about the loss of our abilities and our old self. It’s really up to us.
Stacy Taylor and Robert Epstein in Living Well with a Hidden Disability say, “…love yourself no matter how you look or feel. Believe in yourself even if people question your symptoms. Trust that you have the inner strength and perseverance to survive whatever life hands you.” That says it all! Doesn’t it?