Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
4 Essential Limitations to Set When You're Chronically Ill
For many years after I became chronically ill, I was in denial about the need to set limitations in order to keep my symptoms as manageable as possible. I refused to believe that I might not recover my health. I thought: “You get sick; you get better. It’s as simple as that.” But that’s not the case for millions of people across the globe.
One example of my refusal to set limitations is that, six months after becoming ill, I forced myself to return to my teaching career. Even though I only taught part-time, I was too sick to be working. I write about this in the second chapter of my first book, “ How to Be Sick ” – how my life consisted of either lying in bed at home, lying on a couch in my office or sitting on a chair while I taught my class.
When I finally realized I had to stop working (trading the classroom for the bedroom), I still didn’t set limitations. Why? Because I blamed myself for failing to recover my health. I also felt guilty because I had a newborn granddaughter, Malia, who lived in Los Angeles (about 600 miles from me) but couldn’t spend time with her the way I’d imagined I would when I had grandchildren.
That brings me to a second example of how I refused to set limitations. I forced myself to take a plane from Sacramento to Burbank several times to visit Malia and her family. Those trips are a blur in my memory except for one thing: I vividly remember the bed my daughter would show me to as soon as I got to their apartment.
And, as a final example, we also had family traditions that were now outside my limitations, but I refused acknowledge that and wouldn’t let them go. (I also write about this in “How to Be Sick,” in the chapter on self-compassion.) I forced myself to go to Escondido (near San Diego) so that I wouldn’t miss a Thanksgiving tradition we’d established with my son’s wife and her family. I spent almost the whole entire holiday on my daughter-in-law’s parents’ bed.
That trip was one of the lowest points I’ve experienced during these almost 18 years of chronic illness. Their bedroom had a big window that enabled me to see across the backyard and into the family room. I lay on their bed, watching my entire family together, chatting and having a good time. I watched and I cried.
Learning to Set Limitations
Confined mostly to my bed at home, I started hanging out online, using my laptop. I found other people who were chronically ill (chronic illness includes chronic pain). Even if we had different diagnoses, their day-to-day life experiences were strikingly similar to mine. I began to think that maybe it wasn’t that unusual to be chronically ill, which would mean it was not my fault that this had happened to me.
I also have a background in Buddhism (which I practice as a practical path, not a religion). I remembered that in the first noble truth, the Buddha provided us with a list of unpleasant experiences we can all expect to encounter at some time in life. I’d read that list many times but had never paid attention to this one word that was on it: illness.
I put together what I was learning online and this statement from the Buddha and realized that illness was not an aberration. It was a normal part of the human life cycle. It can happen at any time (as I’ve learned so well from the emails I get from people who are in their 20s, sometimes their teens).
When I began to accept that chronic illness was simply what had happened to me along life’s path, I decided to take chronic illness as my starting point and build a new life from there. And that’s when I started to set limitations, thinking long and hard about what I could do, what I couldn’t do, and what I could do within limitations.
Here are the limitations that I’ve found to be essential. I think of them as rules to live by.
1. Limit the number of things you commit to in a row.
I have an online calendar. When I make a doctor’s appointment or agree to an interview or a visit from a friend, I do everything I can to make sure that, on the day before and the day after the commitment, my calendar is empty.
Of course, I can’t always pull this off because, as John Lennon famously said, “Life is what happens to you while you’re busy making other plans.” In other words, some weeks get away from me. My calendar might be empty on a day that I’ve purposefully left blank, but if the plumbing backs up, I’m going to call – and then “host” – the plumber.
(If you’re still working, you can apply this limitation by leaving your calendar blank on days that are before and after a non-work commitment.)
2. Limit your activities to what you can handle without causing a flare in your symptoms.
What constitutes “too much” varies with each person. Some people who are chronically ill can travel, so long as they schedule rest periods each day. Other people, like me, are mostly housebound and traveling is out of the question. I’ve found that enforcing this limitation is much harder than making sure my calendar has commitments spread out across the week. Limiting activities to what I can reasonably handle takes discipline, and I have to work at it every day.
I’ve gotten better at it since I’ve seen time and time again the consequence of not limiting myself. I vividly remember the day when my son and family came up from Berkeley with my grandchild, Cam, who was still a toddler then. We’re fortunate to live next door to a park with lots of play equipment for little kids. I wanted to take Cam so badly that I insisted on going and told everyone to stay at the house. I could have handled a short play period, but I was in a defiant mood: “I’m tired of being so restricted by this illness; I’m going to stay at the park as long as Cam wants to.”
And so I did – pushing her on the swings, going on the slides with her. I stayed until she was ready to come home. Not surprisingly, I paid dearly for my defiance. It landed me in bed for days. And it had all been unnecessary. Anyone in the family would have been happy to come with us so that I could leave after a while. But I’d insisted on taking her by myself.
I learned my lesson and have stopped pretending that I’m not limited by my illness. I still go over my limits but nowhere near to the extent I did on that day.
When an important event comes up, such as a wedding or holiday festivities, each of us has to decide if the exacerbation of symptoms will be worth going over our limitations. Sometimes it is. I recently accompanied my husband to a wedding of two good friends. It was a 30-minute drive from home and we only stayed for the ceremony. I was sad to leave before the party started, but I was already over my limit and knew there would be payback. There was, but it was worth it to me. That said, there are some limitations I do not have the option to ignore, such as my inability to travel very far from home.
3. Limit what you agree to contribute to events and family gatherings.
This is related to #2. I’m addressing it separately because it tends to be such a challenge. This is because it often involves having to say “no” to loved ones. I suggest that, before the conversations start about who will bring what and who will be responsible for this or that, you already have in mind what you can comfortably contribute. Perhaps you can bake one pie but can’t do more. Perhaps you can help set the table for a holiday dinner, but can’t help with the clean-up.
It can be hard to say “no,” but it gets easier with practice. Let your sense of obligation and any feelings of guilt give way to your need for self-care. If your loved ones don’t understand, try to educate them about your limitations. If they still don’t understand, file it away as yet another instance of those who, not being chronically ill themselves, are ignorant of the effect it has on a person’s life.
4. Limit your negative self-talk.
I hear from so many people who believe that being chronically ill is proof of some personal failure on their part. As a result, they become extremely self-critical. Sometimes this negative self-talk comes about because of comments we’re subjected to, such as: “I’m tired too” or “You’re too young to be in pain.” One way to limit negative self-talk when this happens is to resolve (and I mean resolve) never to side with others against yourself no matter what they say to you. Their comments reflect their ignorance about chronic pain and illness, so don’t take those comments personally. Trust your own judgment.
I wrote an article for The Mighty about how pacing is the single best treatment I’ve found for my illness. Well, pacing won’t work if you don’t set limitations. If you’re not already doing so, I hope you’ll start today.
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Lead photo: Painting by Maximilien Kurzweil, 1902