Health and wellness touch everyone’s life differently. This is one person’s story.
A few months ago, when the cold air hit Boston at the beginning of fall, I started to feel more severe symptoms of my genetic connective tissue disorder, Ehlers-Danlos syndrome (EDS).
Pain all over my body, especially in my joints. Fatigue that was sometimes so sudden and so overwhelming that I’d fall asleep even after getting 10 hours of quality rest the night before. Cognitive problems that left me struggling to remember basic things, like the rules of the road and how to send an email.
I was telling a friend about it and she said, “I hope you feel better soon!”
“Feel better” is a well-meaning statement. For many people who don’t have Ehlers-Danlos syndrome or another chronic disability, it’s hard to imagine that I won’t just get better.
But it is a lifelong condition, and many people experience symptoms that worsen with age as collagen and connective tissue in the body weakens.
The reality is that I’m not going to get any better. I may find treatment and lifestyle changes that improve my quality of life, and I’ll have good and bad days.
But my disability is lifelong — it isn’t at all like recovering from the flu or a broken leg. “Feel better,” then, just doesn’t ring true.
I know it can be challenging to navigate conversations with someone close to you who has a disability or chronic illness. You want to wish them well, because that’s what we’re taught is the polite thing to say. And you sincerely hope that they get “better,” because you care about them.
Not to mention, our social scripts are filled with get well messages.
There are entire sections of greeting cards for sending someone the message that you hope they’ll “feel better” soon.
These messages work really well in acute situations, when someone is temporarily sick or injured and expects to completely recover in weeks, months, or even years.
But for those of us who aren’t in that situation, hearing “get well soon” can do more harm than good.
This social message is so common that when I was a kid, I truly believed that when I became an adult I would magically get better.
I knew that my disabilities were lifelong but I’d internalized the “get well” script so deeply that I imagined I’d wake up someday — at 22 or 26 or 30 — and be able to do all the things my friends and peers could do easily.
I’d work 40 hours or more in an office without needing to take long breaks or getting sick regularly. I’d race down a crowded staircase to catch the subway without even holding the handrails. I’d be able to eat whatever I wanted without worrying about the ramifications of being horribly ill for days after.
When I was out of college, I quickly realized this wasn’t true. I still struggled to work in an office, and needed to leave my dream job in Boston to work from home.
I still had a disability — and I know now that I always will.
Once I realized I wasn’t going to get better, I could finally work toward accepting that — living my best life within my body’s limits.
Accepting those limits, though, is a grieving process for most of us. But it’s one that’s made easier when we have supportive friends and family by our side.
Sometimes it can be easier to throw positive platitudes and well wishes at a situation. Truly empathizing with someone who’s going through a really difficult time — whether that’s a disability or the loss of a loved one or surviving trauma — is hard to do.
Empathizing requires us to sit with someone where they are, even if the place they are is dark and terrifying. Sometimes, it means sitting with the discomfort of knowing you can’t “fix” things.
But truly hearing someone can be more meaningful than you’d think.
When someone listens to my fears — like how I worry about my disability getting worse and all the things I might not be able to do anymore — being witnessed in that moment is a powerful reminder that I’m seen and loved.
I don’t want someone to try and cover up the messiness and the vulnerability of the situation or my emotions by telling me that things will be okay. I want them to tell me that even when things aren’t okay, they’re still there for me.
Too many people believe that the best way to be supportive is to ‘solve’ the problem, without ever asking me what it is I needed from them in the first place.
What do I really want?
I want them to let me explain the challenges I’ve had receiving treatment without offering me unsolicited advice.
Offering me advice when I haven’t asked for it just sounds like you’re saying, “I don’t want to hear about your pain. I want you to do more work to make it better so we don’t have to talk about this anymore.”
I want them to tell me that I’m not a burden if my symptoms get worse and I have to cancel plans, or use my cane more. I want them to say that they’ll support me by making sure our plans are accessible — by always being there for me even if I can’t do the same things I used to do.
People with disabilities and chronic illnesses are constantly reframing our definitions of wellness and what it means to feel better. It helps when the people around us are willing to do the same thing.
If you’re wondering what to say when your friend won’t feel any better, start by talking to (not at) them
Normalize asking the question: “How can I support you right now?” And check in about what approach makes the most sense in a given moment.
“Would you like me to just listen? Do you want me to empathize? Are you looking for advice? Would it help if I were also mad about the same things you are?”
As an example, my friends and I will often make designated time where all of us can just get our feelings out — no one will offer advice unless it’s asked for, and we’ll all empathize instead of offering platitudes like “Just keep looking on the bright side!”
Setting aside the time to talk about our hardest emotions also helps us stay connected on a deeper level, because it gives us a dedicated space to be honest and raw about our feelings without worrying that we’ll be dismissed.
This question — “what do you need from me?” — is one we could all benefit from asking each other more often.
That’s why when my fiancée comes home from work after a rough day, for example, I make sure I ask her exactly that.
Sometimes we open up a space for her to vent about what was hard, and I just listen. Sometimes I’ll echo her anger or discouragement, offering the affirmation she needs.
Other times, we ignore the entire world, make a blanket fort, and watch “Deadpool.”
If I’m sad, whether it’s because of my disability or just because my cat is ignoring me, that’s all I want — and all anyone wants, really: To be heard and supported in a way that says, “I see you, I love you, and I’m here for you.”
Alaina Leary is an editor, social media manager, and writer from Boston, Massachusetts. She's currently the assistant editor of Equally Wed Magazine and a social media editor for the nonprofit We Need Diverse Books.