What People With Ehlers-Danlos Syndrome and POTS Would Like to Hear – Life Insurance Program

Two young woman sitting in the park and talking about something.

By Mary Kay O’Malley

As a person with a rare chronic illness, there are times when I feel like I’m living apart from most other people in my life. Even my close friends, family, and co-workers are living day-to-day lives so different from mine. But then I remember, all of our lives are different.

There have been many times when someone manages just the right words to bridge the divide and every time it happens, it touches my heart! If you’re living on either side of that divide — as a person with a chronic illness or as someone who loves them — you’ve probably had the same experience.

Here are a few of my favorites:

1. “How are you…really?” Many people dealing with pain and illness on a chronic basis have learned to put on a mask of “fine-ness.” They say they’re fine or feel fine even when they don’t. We don’t mean to be dishonest, though. For me, it just means, “I’m hanging in there! Things are OK.”

But sometimes I just like to have an acknowledgement that I don’t look quite right or something seems off. One friend says she can see it in my eyes. Another can tell when I walk more gingerly or search for words. I don’t need them to question me every day, but I do appreciate it when they notice a bad day and care enough to ask.

2. “I looked up Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) (or name your illness here) and I read about it.” The first time a friend said this to me, I was speechless! It never occurred to me anyone would take the time to look deeper into my disability. When someone says they care enough about my life to research my illness, I know they can see me as a whole person and they want to understand. A variation of this one was a time when I read an article on Pinterest about things to say to a friend with a chronic illness. I sent it to an empathetic friend to show her how much she had mastered all ten suggestions. When she replied she’d read the article months before and so she’d sort of “cheated,” I couldn’t have been more grateful. She had gone to the trouble of looking for my point of view.

3. The next one was a stunner. During a recent phone call with my brother, I was talking about a dislocation. His reaction? “What does that feel like?” It was tough to describe, but I tried! What a great question! All of a sudden it was clear to me how much he cared about me and about my experience with this specific pain. He’d gone beyond the idea of chronic illness and just reached in to understand how it actually felt to be inside this body. I made up my mind to try to remember to do that for other people, too.

4. Another personal favorite is being told to “Just do as much as you can.” In other words, your contribution matters, but it’s up to you to decide how you want to join. It’s hard to be told you don’t have to bring food to the potluck or clean up after the picnic, but it’s great to be given the freedom to determine how to be involved. I hear this all the time from a friend who happens to be my boss. When it’s a tough day or I feel like I’m not functioning at 100 percent, I can get really impatient with myself. She reminds me my best on that day is enough. That is a priceless gift.

5. Finally, from my experience, there are times when the best thing to say is nothing at all. There is a time for silence. Maybe I’d like to try to lift a bag of groceries you might think is too heavy. If it is, I’ll put it down or ask for help.

But if you tell me not to do it, you’re missing a try for independence I might really need. Friends will often offer to help, but sometimes I like to say no. It reminds me I’m capable.

Another time when I appreciate silence is if I’m having a hard time selecting the right words. The gift of silence allows me to find the words I want and to make my point in my own time. When a friend does that for me, I know my opinion matters to them. They think what I have to say is worth the wait!

Each of these conversations — and a hundred others — mean the world to me.

They give others a way to connect with me as an individual with value, opinions and a unique set of obstacles. It’s probably true that many people in my life have no idea how my rare chronic illness affects my days. I know there are people with whom I interact who have no idea about my EDS or POTS —and that makes me happy. Not everyone needs to know — just as I don’t know about the personal lives of everyone I meet. But I will work to be more like my friends who have had the wisdom to communicate these ideas and so many other empathetic thoughts. I, too, want to ask and say the things that will let them know I want to understand them better, too.

Source: TheMighty.com

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