Knowing what to say and how to act around someone with a chronic illness is a riddle. The “right” thing to say or do is as subjective as beauty. Unfortunately, it’s a cross that friends and family of a spoonie bear.
While I empathize with the game of Mindsweeper (who remembers that game?) that is navigating relationships with spoonies, let me tell you as a person with a chronic illness, going to gatherings or being around people in general brings a new level of anxiety and stress.
It’s like I’m forced to transform into this puppet or stepford wife spokesperson for chronic illness. I give PC answers for the most part but there are a tons of things unsaid to friends and family about chronic illness life.
Here are a few tips to help guide you in supporting your friend or family member with chronic illness
1. Acknowledge but don’t obsess
I’ve found that I have 2 categories of friends and family.
The first group totally ignores the fact that I have an illness. They don’t acknowledge it, don’t ask about my health or me at all. Maybe it’s because they don’t know WHAT to say.
But hey, would it kill you to recognize the elephant in the room?
The second group are completely obsessed with my health. These are the people that make gatherings the most uncomfortable.
It’s all they want to talk about but the questions feel more like interrogation than concern. They have their medical degrees from WebMD or Google University and have boatloads advice.
Listen, I have an awesome team of doctors who have things under control. Relax please.
There may be a third group that falls in the middle but there aren’t enough people to say for sure.
2. Silence speaks louder than words
Don’t be concerned at the gathering (when you have an audience) if you don’t check in on me one on one. That’s just fake and I really don’t have time for that.
Now I know that the phone works both ways and I’ve spoken about the loneliness of chronic illness before. But I’m quite a few years in the game and if you as my friend or family member don’t have some of the basics down by now that clearly shows you’re not truly interested.
3. No comparisons please
Friends and family without chronic illnesses, please stop the comparisons.
I don’t want to hear the stories about a friend of yours with migraines and what they did. Nor do I want to talk about how someone else is in remission thanks to some miracle drug.
And for the last time: my tired is not the same as your tired. When I say I’m tired, don’t remind me of my age and say I’m too young for that or how I’m not a mom so I don’t know real tired. Don’t downgrade my symptoms!
4. Believe half of what you see
Contrary to what you believe “well you don’t look sick” or “well you look good” is NOT really a compliment. You say I look good, but the truth is I’m just good at hiding my pain and my anguish.
I am basically an Emmy-deserving actress in the role of “healthy” person. It’s not that I want to pretend. I just don’t want to bring down the vibes of the room by allowing my outside to truly represent how I’m truly feeling.
5. My life isn’t my own
You know how when you have a baby, it’s no longer about you? The same goes for when you have a chronic illness. It’s dumb expensive to take care of and I will have it until I die.
My illness is the boss. Some days its on its best behavior, others not so much. It deprives me of sleep and is constantly something I have to think about.
6. At the Same D@mn Time
I’m allowed to live life and be ill. Can’t believe people think I’m just supposed to be sick and shut in all the time.
First and foremost, it’s seldom that I do exciting things anymore. And on the rare occasion that I go out and have a little fun, don’t be the fun police telling me what I should and should not be doing or think I’m faking because I went out and enjoyed myself.
I mean my God. Since when is fun a capital crime? Oh and please know that anytime I go out, my chronic illness will make me pay for it later.
7. No guilt zone
I’m doing the best I can on all accords. If I miss a function that I said I want to go to, it’s because I couldn’t make it.
I didn’t feel up to it that day. I’m taking my meds and going to my doctor appointments.
The expectations you place on me and the potential to disappoint cause stress and stress is a trigger for me.
8. KTSE: Keep the same energy
Can we be normal? Treat me the same way you did before my diagnosis. Call me to chat. Invite me to hang out.
Chronic Illness life is a lonely life man. If you want to help me in any way, just be normal with slight modification for my chronic illness.
Now I know I probably won’t really say these things to my friends and family because I don’t want to hurt their feelings. But I want to.
Maybe the reason I get so frustrated at the functions is because I haven’t said these things. I’ve always been better at written expression than verbal expression (hence why I started blogging).
But part of good self care is implementing boundaries and articulating needs. So I’m hoping to take my own advice this coming year and letting my friends and family know how I feel.