Tell Me, What’s It Like To Be You For a Day?
When those of us who live with invisible illnesses think about things we would like others to ask us, does the question, “What is it like to be you?” ever come to mind? Perhaps not. And yet, think of the power behind this simple question.
If you live with an invisible illness you may feel like you live two separate lives. Perhaps you are one “self” at a job, where you rarely, if ever, talk of your illness or allow your peers to see your limitations. Maybe you even have a bit of a stubborn streak and refuse to even tell your loved ones that you are coping with an invisible illness. If this is the case, it would be pretty odd for them to ever ask, “What is it like to be you, to live with this disease?”
And then maybe you come home from work, or a dinner with relatives and you collapse. You may crawl into be with a heating pad and cry yourself to sleep.
Soon it is time for your doctor appointment. He or she likely doesn’t ask, “What is it like to be you?” yet the doctor may ask, “So, how are you doing?” And at this time you have to be as honest as possible. This is the person who is there to try to help you. Ignoring the pain and not talking about it to your doctor will only make it worse. And when you do tell him, he may believe you are overstating the pain because “you look so good.”
And yet, it is so hard to be both of these selves–to be the “healthy-looking” one and to be the patient.
We often feel very self-conscious about who we complain to and how much we say to our healthy friends. And yet, our lives are so very, very different than they were before illness entered our life. You can see a smidgen of just how different by reading a few of the memes here on 30 Things You May Not Know About My Invisible Illness.
By asking an ill friend, “What is it like to be you?” you are opening a conversation. You are allowing your friend to express what she is learning through it all, what she would do differently, how hard it is some days just to get up, get her kids breakfast, and get dressed. If your friend is a man, it may typically be even harder for him to share his challenges as men are supposed to be “strong” and providers for their families.
“I know it must be hard someways to be you, to live in a body that frustrates you. If you ever want to just share with me what it is like to be you, what your typical day is like, please know I am here and would love to just listen.”
Be an encourager today.
TWEET THIS: Things TO SAY to an ill person #14 Tell me what it is really like to be you for a day. I’d like 2 understand. #iiwk12
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