Chronic illness has made me say no a lot.
I suspect I’ve lost a few friends to my chronic illness. These are people who used to invite me to things, but whose invitations petered out after my big health crisis in 2016.
In the year or two after my ulcerative colitis landed me in the hospital, these folks slowly slipped away, becoming vague or unresponsive whenever I reached out to them. Eventually, I got the message and stopped reaching out too.
It’s been saddening and frustrating. And I feared it would happen—even while I felt powerless to stop it.
In the aftermath of my crisis, I had to say no to a lot of invitations, or to cancel at the last minute when my energy crashed. I always warned people about my body’s fickleness, explaining that my energy could crash without warning and I might have to cancel. This had already been the case since my diagnosis two years earlier, but the problem had dramatically increased after my hospitalization.
But despite my efforts to explain my situation, I still worried that all my demurrals and cancelations would eventually wear out my welcome.
I’m getting really tired of saying no to people, I wrote back then in an unfinished blog post. (I left a lot of posts unfinished back then.)
For years, since I was diagnosed with colitis, I’ve had to say no so much more often than yes.
It takes energy to hang out with anyone besides myself alone, or just Ron. I have to budget, to ration.
It stresses me out that I have two or three social things planned for each of the next several weeks. That’s too much for me. One thing a week is about right, right now. That gives me time to also go to all my appointments and work 25-30 hours. I need to rest the rest of the time.
But what’s also a strain is saying no. I feel like a naysayer, a party pooper. I know I’m not, that I’m not doing it because it’s what I want. I want to see people. It partly takes energy to say no because I like all these people so much. I fret about hurting their feelings.
I’m afraid that all my noes are damaging my friendships with them. In the mainstream of American culture, we pressure each other to stretch ourselves beyond our limits, and to favor generosity, welcome, and giving over self-care. I fear that others may be judging me, consciously or unconsciously, for breaking from that mold.
I try to go over the top with apologies—but that, too, I’m finding exhausting. My fatigue makes it hard to think or write well.
So this illness puts me in a bind. It forces me to constantly rebel against social norms. I guess that’s what comes with being a minority; I’m not used to having to rebel against the mainstream just to be who I am. I suppose that if I were gay, or a different race, or transgender, or anything other than the dominant culture, then I would probably be used to feeling this way. It would probably be second nature to know that being myself means going against the grain. It’s been a privilege to not have to go against the grain until now. But now I do feel this subtle strain, and it’s interesting and hard.
Another lesson from this: How busy I must have been before! If I’m saying no so often now, think how often I used to say yes. As an introvert, every interaction takes energy for me, even when I’m not sick.
It’s been several years since I wrote that. Thankfully, my fatigue has greatly lessened, although I still need more rest than most people. But in a handful of cases, it seems that my worry about offending others came true.
Maybe this is for the best. After all, I can’t handle as many friendships as I had when I was healthy. Part of me wants to declare that if someone can’t forgive me for my illness and the inconvenience it causes, I don’t want them as my friend anyway. So there!
But it still hurts.
The invisible impact of low energy
The pain of losing friendships to fatigue has gotten me thinking about fatigue in general. In modern America, we pressure and judge tired people without meaning to—whether or not their fatigue is due to some diagnosed illness.
Before I became chronically ill, I myself had a lot of energy. I also had far less sympathy for people who didn’t. I automatically respected tired people who I knew were ill, because I placed them in a category that defaulted to respect, the same way I automatically respected the well-known fatigue of new parents. But when I wasn’t aware of any underlying health or family conditions, I think I vaguely and unconsciously judged a person’s fatigue, so that it edged closer to laziness in my mind.
I don’t remember ever thinking of my generally abundant energy as a form of privilege, which it was.
And it never occurred to me that expecting a tired person to do more than they can do is a form of ableism, which it is.
Now that I have my own chronic illness and the fatigue that comes with it, I want those around me to respect it as a form of disability. If I relied on a wheelchair, I would require accessible buildings, and no one would question that. The fatigue-related needs of the chronically ill should be recognized and honored too.
But also, I want everyone to be aware of “energy ableism” and to generally be more compassionate to tired people, even if they have no diagnosis. Perhaps when it comes to fatigue, we should see disability as more of a spectrum, with the line between “able” and “not able” more blurred.
It’s too common to feel irritated with colleagues or loved ones who aren’t reciprocating our contributions to work or to household chores. In many cases, people don’t reciprocate because they’re overwhelmed and simply don’t have the energy reserves to keep up.
Fatigue can too easily be mistaken for laziness. Instead of pressuring, in many cases, we should be adjusting our expectations.
This thinking is especially relevant now. As the world slowly reopens, then constricts again, then reopens again after pandemic shutdowns, and as we navigate the bustle of the 2021 holiday season, we can all use more compassion about fatigue. Modern society is exhausting, especially at the moment.
I want higher-energy people to recognize this form of privilege and cut tired people some extra slack. Sometimes, when someone says “no” to a chore or an invitation, it really isn’t laziness, and it’s nothing personal. It’s just fatigue!
The joy of being included, despite fatigue
The good news for me is, the vast majority of my friends have stuck around despite my limitations. Their understanding and support have meant the world to me. I can think of three specific things they’ve done to make me feel loved and included.
First, they’ve kept inviting me to things, even when I said no a lot. They did this, in part, because they respected my explanations of my behavior. When I said it was my illness that was making me say no, and that I really did want to hang out, they believed me!
Their continuing invitations have warmed my heart. Even when I have to decline, I love knowing they’re still thinking of me and wanting me around.
Second, they’ve made it easy for me to say no. The best invitations say something like this: “I would love for you to be there, but please don’t feel obligated—I totally understand if you have to stay home and rest.”
These words are always a great relief, because they remove my anxiety about hurting feelings if I say no. I try to use similar language whenever I send an invitation to someone who I know is struggling with fatigue or generally feeling overwhelmed, and I always hope that when I don’t say this explicitly, it’s understood by everyone.
And finally, some friends have gone out of their way to make me feel included when I can’t fully participate in social gatherings.
In pre-pandemic times, when Ron and I held potlucks at our house, I always told people not to worry about my dietary restrictions. I had so many of them that I didn’t want to burden everyone with catering to me. I just made my own food, resigning myself to eating differently from those around me.
But a few times, friends showed up with beautiful non-food gifts I could enjoy. They brought me flowers, or herbs, or potted plants, or books they thought I might like. Each time this happened, I was always deeply moved by their thoughtfulness. It felt wonderful to know that my friends recognized that I might feel left out.
(I’m also always impressed and touched by friends who offer to cook for me, earnestly asking for lists of all my restrictions. When you experience the loneliness of food isolation, it’s such an amazing gift to be cooked for and to share food with other people!)
Most of all, what means a lot is sensing my friends’ forgiveness. Not that my condition is something to forgive. But my friends understand that my body doesn’t allow me to do everything I’d like to do, and that when I can’t show up as often or as vibrantly as others can, it’s not for lack of caring. I know they know I’m doing the best I can.
This is a form of compassion I hope more and more of us can bring to others, especially in this strange pandemic world. You just never know what someone else is dealing with.
The benefit of the doubt is such a powerful gift.
