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.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

woman pulling her hair

When People Closest to You Give Unwanted Opinions About Your Chronic Illness

There are so many people out there in the world who rush to give their opinions on what chronic illnesses are or aren’t and what they think will cure them. Usually, those opinions, more often than not, are based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated [...]
woman walking in a field in the evening

The 3 Words That Help Me Find the Positives About My Illnesses

“Be obsessively grateful.” It’s in my Twitter bio, pinned on my Pinterest account and is even my lock screen on my phone. Several people have asked me why this quote is so important to me. It’s strangely worded. Yes, the word “obsessive” can indicate a behavior that isn’t exactly positive, but I love how that [...]
Black door opening in a dark room with a bright light falling in showing the shadow of a person

When Being Sick Is Like Living in the Twilight Zone

Ever see the “Twilight Zone” TV show from the 1950s/’60s? I don’t watch much television, but it’s been one of my favorite shows since I was a kid. It’s spooky and often very profound, and it explores human fears and frailties. Quite often, protagonists find themselves thrust into different dimensions, post-apocalyptic worlds or situations where [...]
woman laying on couch under blanket

The Struggle to Balance Between Resting and Using Energy When You're Chronically Sick

Balance! How do we achieve it? I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. I wake up one day and feel actually pretty good. So I want to accomplish more than I usually can do, but I [...]