Tell Me, What’s It Like To Be You For a Day?
What is it like to be you? How rarely we ask one another this question.
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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-ljc
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I don’t know how many times I’ve felt like a hypochondriac at the doctors. Even more diff when most look at you like they can’t wait to get you out of the office.
I also don’t work so people automatically assume it’s one big holiday. Hardly anyone asks how I am doing. It is worth noting that most people don’t ask about your pain cause their so busy dealing with their own.
True. People have no concept that it can be that my life as I’ve known it has come to an end. I have been mourning the loss of my life… and trying to figure out a new life. All while having pain breathing, lying in bed, showering, bending my neck to look at the ceiling, talking on the phone… there is no escape at any moment. And my body doesn’t tolerate pain meds… so I isolate myself and only talk to a friend like once/month because it takes so much energy to pretend that I’m the same person.
Mourning the loss of your life. I can identify with that. I think we assume that at a certain age we will be married with a job and have kids and if that doesnt happen we experience a real loss. I don’t try to pretend I was the same person I was. But I have lost A LOT of friends because I can’t go out often and I don’t drink. I often think people are judging me based on my condition and unemployment and maybe this is not always the case but it makes me isolate myself so I don’t have to deal. I think it’s diff for people to accept that things aren’t ok when you look fine.
I hope your situation improves Tina. Sounds like you have a lot to deal with. We are prolly on the other sides of the planet but if u want to add friend…
I THINK I WOULD FALL OVER DEAD IF ANYONE CARED ENOUGH ABOUT ME TO ASK ME THIS!!!!!!!!!! so funny
As mine are all congenital bar a few my answer is ‘i dont know any different, it is confusing and overloading for me’
I have struggled with self-centeredness most of my life and denial blinded me from this. Now as I live with Psoriatic arthritis at 35, I don’t want to at anything. Yep, I’m hurting, but am I being self-centered, complaining, God had a mess when I came to Him. If someone asked me the above question, I’d grab my snow gear. Maybe those around me are struggling to process it all themselves. I can’t see anyone dare ask that of me, expecting an answer. I’m a mess. I can smile today. :) Thanks God, for this ministry You directed me to at 3am last year.
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