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Invisible Illness: What Would You Say If Someone Asks, "What's It Like to Be You?"

  [ 27 votes ]   [ 1 Comment ]
By Lisa J Copen* • • August 22, 2012

Lisa Copen, who lives with rheumatoid arthritis and fibromyalgia, is founder and director of, a nonprofit dedicated to practical and spiritual encouragement of persons coping with chronic illness or pain – and sponsor of (National Invisible Chronic Illness Week), Sep 10-16, 2012. This article, outlining one suggested activity for Invisible Illness Week, is reproduced with kind permission.*


Tell Me, What's It Like to be You for a Day?

Lisa J Copen

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 bed 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 whom 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 some ways 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

• Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

* * * *


1. The illness I live with is:

2. I was diagnosed with it in the year:

3. But I've had symptoms since:

4. The biggest adjustment I’ve had to make is:

5. Most people assume:

6. The hardest part about mornings is:

7. My favorite medical TV show is:

8. A gadget I couldn’t live without is:

9. The hardest part about nights is:

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:

14. People would be surprised to know:

15. The hardest thing to accept about my new reality has been:

16. Something I never thought I could do with my illness that I did was:

17. The commercials about my illness:

18. Something I really miss doing since I was diagnosed is:

19. It was really hard to have to give up:

20. A new hobby I have taken up since my diagnosis is:

21. If I could have one day of feeling normal again I would:

22. My illness has taught me:

23. Want to know a secret? One thing people say that gets under my skin is:

24. But I love it when people:

25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them:

27. Something that has surprised me about living with an illness is:

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week ( because:

30. The fact that you read this list makes me feel:


See also:

• The results of a 2008 Invisible Chronic Illness Awareness Week survey - 55 ways chronically ill people said they respond when told "You Look So Good.” Selected from the responses of more than 1,200 people.

“You Are Too Young to Look That Sick! Invisible Illness Challenges,” by Lisa Copen.

* This article, first published Aug 3, 2012 on, is reproduced with kind permission of Lisa Copen.©Rest Ministries, Inc. 2012. All Rights Reserved. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why, at the Rest Ministries shop.

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Article Comments Post a Comment

Good and Bad just like you
Posted by: Karob
Sep 2, 2012
I have had an immune related illness since I was a teenager, and been sick on and off since then. Aren't all chronic illnesses and chronic mental health issues essentially invisible?

I am not sure I understand what the significance is of making a deal about it being invisible. Isn't that the nature of it? And doesn't that make it better than having to "wear" a disability like some people have to?

Yes, I have to take charge of my health more than most people and there are many many things I cant do, but I don't have to make excuses for it either. Having chronic health problems has given me a lot of empathy for others and I think all humans who have lived long enough have some sort painful invisible something that they live with.

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