I’ve been diagnosed with fibromyalgia and chronic fatigue for almost a year and a half. I deal with widespread chronic pain, perpetual exhaustion, executive dysfunction, and a handful of other delightful symptoms. I have good days where I can function reasonably well and present as able-bodied and healthy, and I have bad days where I can’t get out of bed and my symptoms render me thoroughly disabled. Usually, I fall somewhere in the middle of these two extremes. My physical and mental functioning is limited, unpredictable, and impacted by stress, emotions, weather, and my immediate environment. It’s frustrating to deal with, but I am trying to embrace the slow process of learning to live more slowly, disregard American societal expectations of productivity and self sufficiency, and focus my energy on what really matters to me.
At least once or twice a week, a well-meaning friend or relative tells me that they are praying for my body to be healed of fibromyalgia and chronic fatigue. I fully appreciate that these assurances come from a very real desire to encourage, and to see a loved one relieved from pain and limitations. However, while I’m living with pain, fatigue, limitations, and grief, constantly being told that my loved ones are hoping for a miracle to befall me can feel like a lot of pressure, and even a denial of or a detachment from my reality. The truth is, I am very likely to deal with my illness in some way, shape, or form for the rest of my life. Some people with chronic illnesses are eventually able to find medications, diets, routines, exercise, or supplements that help them manage their symptoms, sometimes well enough that they can do the same things non-ill, able-bodied people can do most of the time. Some people with chronic illnesses find that they develop new conditions and disabilities as they age, or they have progressive illnesses that shift and gain or change symptoms as time goes on. Many of us fall somewhere in the middle of this spectrum, we learn to manage our symptoms, which can be a long process, and we will likely have to keep managing them throughout our lives. That said, it is rare for people to make complete recoveries, so knowing that people I love are praying that I will be one of those few doesn’t necessarily feel good for several reasons:
- I feel pressured to seem more healthy because you’ve put faith in my healing. I’m still working out what I believe about God and suffering in light of all of this, so I don’t always feel equipped to help you understand my lack of healing or to comfort you about the chronic nature of my illness.
- I feel isolated by your choice to focus on my hypothetical future healing instead of choosing to be present to my pain and my life as it is now. It can feel like people are waiting for me to get well so we can have fun again, or so they can feel satisfied that I’m doing well and they don’t have to worry about me.
- It feels like you’re in denial about the chronic part of my chronic illness. It’s a lot of ongoing emotional work for me to make peace with the fact that I will be managing symptoms for the rest of my life (even though I do have hope it will get better than it is now). I am still grieving the loss of the life I hoped I’d have, and I welcome support and company in that process, but it only makes it harder when other people are so focused on their desire to see me ‘fixed’ that they can’t come alongside me and love me in my grief.
- These prayers for healing are often accompanied by the assertion that once healed I will be able to live out my purpose. This makes me uncomfortable for two main reasons. First, because implies that my life will not have purpose and meaning while I am disabled, which just isn’t true. Second, it makes me feel like you believe I deserve healing more than any of the other millions of people with illnesses and disabilities on the planet. Most people don’t become miraculously healed, so why should I be the exception? I have a great deal of privilege in other areas of my life, I have a supportive family, I am reasonably financially stable for a recent college graduate, I have enough education that I don’t have to find work that demands painful physical labor, etc. Yes, it’s still really difficult being chronically ill. But if someone gets a miracle, it shouldn’t be me.
- It upholds cultural standards of productivity and health as determinants of worth. While I am often frustrated by my chronic pain and fatigue, I do believe I can have a rich, fulfilling life while being disabled. So, it can feel like your wish for me to be healed denies the potential value of my future with my illness, like my life would be worth more if I was healthy, which is an incredibly harmful narrative that is unfortunately pervasive in American culture.
Of course, people who don’t pray or believe in miracles do other things that evoke similar emotions: like suggesting expensive (medically dubious) miracle cures, or assuming that treatments are one size fits all. However, I have found it especially challenging to communicate with my religious friends about how they can love me through this, while still respecting their earnest faith and desire for my well-being. Now that I’ve communicated about how prayers for healing don’t comfort or support me, here are some ways that anyone who wants to can love me and their other disabled/chronically ill friends, family, and neighbors:
- If praying is important to you, pray for me to have more good days than bad days this week, or pray for my community, family, and doctors to know how to support and care for me, whether or not I can be cured. I’d also suggest asking what I (or your neighbor/friend/family member) would like prayer for.
- Educate yourself a little about my illness/disability if you can, and do any emotional processing about it that you need to do with someone besides me. Having to teach and then comfort someone else about my illness is something that happens more often than you might expect. I don’t mind teaching people about my illness too much, but sometimes I don’t have the energy. It’s really hard for me to comfort someone else about my pain and fatigue. Please don’t make me do that. I know you want to show sympathy, but don’t make me reassure you that I’m okay, I’m dealing with a lot and it makes me feel like I can’t be honest with you about how I’m doing. (For more on this idea look up Circle of Grief/Ring Theory.)
- Take a little time to think about how you can come alongside me in my process and in my life as it is now. For many ill and disabled folks isolation and loneliness are huge frustrations, you can help with that by setting aside time for us, asking how we’re doing or if we want to process how we’re feeling, and do the work to sit with us wherever we’re at emotionally and physically without trying to fix us. Sometimes you can’t help, but you can always love.
- Remember that while my illness/disability impacts my whole life, I’m still a full person with inner and outer lives, who has valuable thoughts and ideas. Ask me what I’ve been thinking about, listening to, reading, etc. Sometimes your disabled friends’ outer lives are limited and we can’t work or get out much, so asking about our inner lives can be a good way to reassure us that that our lives are valuable, even when they aren’t materially productive.
- Think of us when you vote on issues that impact us. A major reason that life for people with illnesses and disabilities is so challenging is that American society largely isn’t inclusive or accessible to people who are not able-bodied. Advocating for inclusion and accessibility in our infrastructure, institutions, and cultural values is a huge way to support your disabled friends, family, and neighbors in living fulfilling lives with our disabilities (not in spite of them).
- Help us come up with fun ways to spend time with you within our limitations. Personally, I often worry that I’m not fun anymore, especially in particularly bad seasons of pain and fatigue. So I appreciate it anytime someone comes alongside me in the process of finding new ways to have fun together!
- Ask people what they need and how you can best support them. This list is obviously not exhaustive, everyone’s experiences of illness and disability are unique to them, so ask your loved ones how you can support them or what they need. It can be hard for me to ask people to do things for or with me that support me in my illness because I often worry about being a burden, but when people ask what I need and then offer support that meets those needs, I feel cared for and understood.
Dealing with grief and suffering, whether our own or someone else’s, isn’t something we’re very comfortable with in American culture. Many people have trouble connecting with others in grief, and don’t know what to say or do to offer support. So, well-meaning people fall back on generic platitudes, which aren’t necessarily wrong, but which can feel deeply isolating and simplistic when I’m living with the difficult reality of constant pain. Instead of relying only on hope, or prayer, or waiting-and-seeing to take care of your sick and disabled loved-ones, consider how you might couple your hopes and prayers for us with substantial action to make our lives a little better, easier, or brighter. Sometimes this action is as simple as being present and reminding your ill/disabled neighbors that the pain we deal with doesn’t detract from our personality, dignity, and value.