On a September morning two and a half years ago, I stumbled into a room marked “23,” yanked my suitcase across the lip of the doorframe, and said, “Hi, are you Maddie?” Yes, she was Maddie. She was to be my roommate for a semester in Oxford, England, and we were fast friends within 24 hours, friends for life within the month.
Maddie had been diagnosed with Lyme Disease weeks before we met. As our friendship began, she was starting her treatment and learning how to integrate her new knowledge of her illness into her self-understanding. I had the amazing opportunity to know her through this process, to see her strength and resilience as she learned about her illness, and to begin learning myself. Having not experienced chronic illness or disability in my own body, I had a lot to learn about living alongside illness and loving a friend whose experience I could not completely share.
Chronic illness affects at least half of adults, and autoimmune diseases are disproportionately more common among women than men. But our society doesn’t talk a lot about chronic illness or disability, which means many women feel isolated, fighting not only their own body but other people’s criticism and assumptions. As I’ve grown with Maddie, and as I’ve watched her interact with other friends in both positive and frustrating ways, I’ve seen some themes in the kinds of approaches that make a successful friendship when illness and/or disability are in the mix. I hope my experiences will help you as you interact with the amazing vinas in your life for whom every day brings extra challenges.
ACCEPT THAT YOU CAN’T FULLY RELATE
No matter how many times you read about an illness, no matter how many times you ask your vina what she’s feeling today, you can never safely assume you know what’s going on in her body. Chronic illnesses and disability affect everyone differently, and no two days are the same. Symptoms come and go for what seems like no reason at all. One day, she might be doing really well, and the next day could be awful. Don’t be surprised by sudden changes in her pain or energy level; she might not always be able to do what she planned, or what you hoped for, or what it seems like she should be able to do. Be patient, be supportive, and give your vina the benefit of the doubt. Let her set your expectations. Better yet, let go of expectations altogether, because chronic illness and disability are in the business of defying them.
You’re probably not an expert in your friend’s condition. Even if you known others with the same illness, or if you’ve fought it yourself, your vina may have a very different experience than what you’ve been used to. Either way, if you’re going to be part of her life, you’ve got to start learning what she’s going through. Chronic illness and disability leave no room for staying in your comfort zone. Be honest, ask questions, research. Learn the medical side and the day-to-day feeling-like-crap side. Show your support by taking action, even if it’s not something you normally do (5k/walk? Special photo shoot? T-shirt? donation to an organization that researches the illness?). The entire internet is yours to explore: learn more about how chronic illness and disability affect women at womenshealth.org, and read how the UN is supporting women with disabilities. Find blogs by women who have your vina’s illness or disability. Ask your vina if she’s found helpful online communities, and check them out yourself – that’s how I learned about More Than Lyme and The Gallery of Us. Ask her what resources she likes that could help you learn more.
Expend some effort here – your vina puts energy toward this every day. Know your limits, and respect hers. But do get out there.
When getting clean and dressed claims most of her energy, or when she has to say “no” to activities she truly loves, it can be really hard for a vina to fend off feelings of deep discouragement, and you might start to see that soon into your friendship. Encourage her! Celebrate her existence, because she is beautiful and valuable and she’s doing everything she can. Surprise her with breakfast, or write a note to remind her how much she means to you. Stay up on her involvements, take part in her victory dances, and affirm the value of her accomplishments in whatever way you can. Most importantly, learn what makes your vina feel genuinely loved and encouraged. (But be sensitive when she needs her space.)
REMEMBER THIS IS HARDEST ON HER
As you deepen your friendship with a vina who lives with chronic illness or disability, you’ll learn and grow and appreciate her in new ways. There may be times when you feel frustrated watching her struggle, or when you’ll feel like giving up trying to make things better. Illness and disability isn’t easy for anyone. But no matter how much you might want to take out your frustrations, no matter how badly you want to lay blame somewhere, no matter how angry or hurt or disappointed you feel, remember: she feels all this too, and more. It’s painful to watch her illness or disability pull her down, but more difficult than watching is what she feels as she watches hopes and expectations crack, senses her body’s war, and sinks beneath the weight of society’s misunderstanding and scrutiny. You do need to pay attention to your energy, and to find space for yourself if you need it; as you do so, be mindful of the fact that your feelings reflect her struggle. Let your own emotions about the illness and disability lead you to greater empathy with her. Be patient. Persist. Love. You’re friends with a woman, not a disease or disability.
And that’s just it – on the other side of the illness, the other side of your vina’s disability, is a woman like you. You’ll make amazing memories with her, you’ll laugh, you’ll have fun, you’ll argue, you’ll cry together and reminisce and walk through life side by side.
(Featured image via @globerollers_)