“How are you feeling?”

Dear so and so,

We’ve never done this before. We’re not supposed to know how to do this illness thing. This will take learning and changing and those things aren’t always easy. We’ll have to keep bumbling along and making mistakes as we go. We’ll have to remember to reflect, unlearn, and make our needs known. And we will need to learn about ableism. So, in the spirit of reflective bumbling, I need to tell you an important, hard truth: I’m tired of answering “How are you feeling?”

My life is defined by illness – symptom tracking, activity planning and pacing, and repeatedly explaining myself to others. Illness has become part of my identity and that is a necessary thing. Yet, it’s not all of who I am. My existence is often reduced to symptoms, improvements – or lack thereof – and an occasional side of “You’re inspiring!” I miss sharing other parts of myself with you. Lately, my few and far between interactions are characterized by asking after illness specifics. But you will eventually tire of asking. And I’m already tired of answering. It’s clear to me that our connections need reimagining. First, you must remember: I am more than the status of my illness.

I love that you’re trying. Thank you for trying. I’m glad you are not avoiding (that’s a letter for someone else), but you should know that “How are you feeling?” is not a simple question. This question makes my mind freeze with immediate overwhelm since an honest and concise answer does not often exist. I cannot easily or honestly reply with “I’m fine” – especially when you’re looking for specifics. With this comes pressure to manage expectations. It is emotional labour to assuage fears and anxieties when you’re asking because of worry or sadness. If I truthfully answer that I’m not well, I risk pity, awkwardness, or toxic positivity. On the other hand, an announcement of good news brings its own dread since what follows are expectations of a continuing trend. So while you hang on each thread of “progress” and prayers answered, I’m left wondering “Do they only see my illness and disability?”

Emily Ladau says it well in her book, Demystifying Disability: “I don’t want people to think that engaging with me or any disabled person requires learning a comprehensive set of rules and regulations…You don’t need to start overthinking everything you say or do. That just makes things weird. It isn’t about tiptoeing around us and treating us like strange, delicate flowers. It’s about treating us like full and equal human beings.” So, let us recall and revive our shared humanness. Let’s laugh and cry together about more than a symptom list, because I want to share other things with you, too. Illness vastly changes relationships, but I remain a person with dreams, interests and skills. Ask about my advocacy work. Ask what I’ve learned or what I’ve been thinking on lately. Ask me whether I need support for anything. Ask if I’ve been outside or what I’ve enjoyed this week. Curiosity about illness and disability is good, but difficult questions can put me on the spot. It might help to ask for permission, first (“Can I ask you a question about your illness?) Or by asking a more specific question and giving me a heads up on the topic (“I’m curious about your [sleep/post exertional symptoms/cognitive fatigue/headaches, etc.] Are you okay to talk about that?) If I want to explain, I will – and by all means follow up if I’ve given you details – but I’m asking for more thought around how we communicate. Perhaps it will help to ask some questions of yourself:

“Am I trying to acknowledge the illness or disability? Why do I feel the need to acknowledge in this way/at this moment? Am I curious to learn about the illness itself? Why am I asking this question?”

Maybe the answer is “I’m concerned about them and I want to know.” Well, here’s another filed under Hard Truths: Caring doesn’t entitle you to details. Concern, love, and prayer are not tickets to the no-boundaries party. The reality is, sometimes I won’t want to talk about it, and sometimes I will. No matter how good the intentions or how badly you want to know, I may not want to share. This isn’t a concept reserved only for me. You are allowed to have boundaries, too! And it’s ok to feel grief or loss – change like this is can be hard for families and friends. Consider finding a space where you can process. Consider learning more about ableism, too. Boundaries don’t mean we won’t ever share in my illness experience or that you can’t be curious, but keep thinking on other questions to ask, too.

Hard Truth number three goes like this: Acceptance is key. I am likely to continue living with illness. It is a central theme of my life. Maybe you haven’t accepted that, yet. Contrary to seemingly popular belief, acceptance is not giving up. It is healthy, necessary, and goes hand in hand with hope. I find hope is intertwined with acceptance. Hope becomes present when I accept unknowns. Hope and acceptance mean less resistance and more peace. Acceptance is looking reality in the face and dealing with it. Illness centrality in my life is necessary and to be expected. It will define much of me because it must. So, I’m not saying we can or should avoid that my illness exists – in fact we need to accept that it does. I am saying that “How are you feeling?” can be a complex and difficult question. I am saying curiosity is welcomed, but more thought around why and how questions are asked is helpful. I’m asking you to remember the other things that make me who I am, because often other parts of me become less visible, less valid, or less important to others. We are changed by this illness experience – there’s no going back – but remember there is more to me than a symptom list. I will always be far more than the status of my illness.

Most sincerely,

Your loved one living with illness and disability