Why This Question From My Friends Is So Important for My Chronic Illness

Asking the question, “What do you need to do for you, right now?” seems like such a simple question, but it can change the entire experience for me since I have a chronic illness.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

First and foremost, asking this question of myself is the first step to self-advocacy. I can’t communicate with others about what I need when I’m trying to manage all of the different signals I’m receiving, while trying to also participate in whatever activity my family and friends have chosen, until I know what I need. And the reality is, I might not know what I need, but asking that question of myself is always the first step to find that out and working through it.

Trying to figure out what symptom is bothering me the most and what may be triggering it is a challenging process, and it takes a lot of practice. It takes a lot of frustrating days, along with trial and error. And sometimes, even when I’ve done everything right, I’ll still be just plain wrong. But asking myself “What do I need to do for me, right now?” reminds me to experience things with my whole self. I can have fun out on New Year’s Eve or during spring break with my friends, even with my chronic illness, if I allow my chronic illness to experience it too. It sounds odd to say it like that, but my chronic illness has a perspective and opinions about what I do just as much as I do — probably more so — like a young child in tantrum mode if I get it wrong. Which means that internal conversation and making sure it is heard is even more important.

But I noticed, asking myself those questions is a thousand times easier to do when someone else is asking me that question as well.

It’s part of inclusion, understanding and acceptance. I experienced this recently over my break between semesters, when I spent time with my brother and his girlfriend, along with friends from undergrad. We have all gone our various directions since we graduated, and in the past few months, I have been growing used to my new environment and new people. All people who didn’t come on my diagnosis journey with me, like everyone who I got to see over break. Those people know just about as much about my conditions as I do, and it shows in their interactions with me.

It was cold and we did a lot of walking, and I was asked every once in a while, “Do we need to go inside?” or “How are you feeling?”, and when a new destination was proposed it was always self-edited to accommodate my conditions (instead of walking, we take the bus; instead of going up all of these stairs to a building we’re not sure is the right one, someone goes ahead and checks first, and then lets the rest of us know).

It was small moments, ones I didn’t even need to suggest; they were just built into the planning, as it was expected as a result of my situation. We didn’t “not do” anything because “Majesta-Doré can’t do that” —  our plans were just edited to ensure that I could. It was true inclusion in a friend group without exposing my condition to the deepest of scrutiny.

It’s often difficult when out with a group of people because someone may suggest something that I can’t do, and I am left either having to subject myself to it, or having to say I don’t think I can do it exactly as proposed. Then I have to explain why — I have this condition. It affects me this way. I still want to participate, but can we change this one detail. And then it’s 50/50 whether the plan gets wholly abandoned, or adjusted.

Also, 8 times out of 10, I have to answer lots of questions about my condition I may or may not be entirely willing to answer. It’s not their fault; it’s new to them. But accommodation is made out to be a “big deal,” and it shouldn’t be so.

If every friend group planned things to be universally accessible, there would be less need for inappropriate questioning, vulnerability and much less social isolation of chronically ill and disabled folks.

Nobody wants their first, or even their second, conversation with someone they hope to befriend to be about their chronic illness, but some people are forced into it, and it’s uncomfortable, often gets cringey reactions and may deter future interactions.

Just asking the question of any friend — no matter if they have an illness or otherwise –“What do you need to do for you, right now?” will give us the opportunity to have more open, honest friendships that are actually inclusive while avoiding putting someone in the position of having to volunteer information that really isn’t anyone else’s business.