How Do We Talk About Our Illnesses in Social Settings?


As we gather around family and friends, have you thought about what are you planning on sharing about your medical condition? I have struggled with this topic for years. Living with two invisible illnesses, I am constantly told I look great, many times after having a terrible night with breathing and trying to hold on to life. So, what do I say? Do I correct them and let them know how scary life really is and the pain I have had to endure, or do I smile and say thank you?

What I have learned through the years is:

1. We can whine and complain, but who wants to hear this negativity? All people have things to cope with in life; this just happens to be ours. So when people ask how I am, I usually respond by saying, “I could whine but who wants to listen?” and it seems to lighten the air.  Then, the person who really wants to know the truth will encourage more out of me. I am very careful who I open up to and want to share only with those who truly want to know. I also have found a good line for me is to say, “Yesterday was a good day” and not getting into detail about what is going on that is tough on the day they ask me.

2. After spending four years in and out of the wheelchair, it became clear to me that it made some people uncomfortable looking at me like this. So, I learned that part of my new reality was to help make people comfortable around me. Give it a try and see if you can help make them more comfortable with what you have to cope with. Help educate those who want to learn more without boring them with every gory detail.

3. Although your smile will get misinterpreted by others that all is wonderful, I have made a decision that I would rather be remembered as someone who is trying than that person who is angry, resentful, and feeling cheated with life. It is not an easy process to work with at times, but I believe being positive is much more productive than getting stuck in the negative.

4. We all have one life to live, so try to find the good in what you do have and be grateful for those positives in your life. No one wants to be dealing with medical issues, but we are human and the body has to cope with so many environmental exposures and genetic makeup that we are destined to live with.

Living with a chronic condition takes time to learn to adjust to. Don’t beat yourself up as you first learn to accept and adjust to your new reality. But, as time moves on, also learn to live with your body as it is and help others to get educated about what you face, if they seem to really want to know. Also, sharing your truth to another also struggling can be so freeing for you and encouraging for the one just learning to accept and cope.

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