Illnesses like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), Fibromyalgia and Lyme disease are extremely hard to understand. In fact, even when you’re the one experiencing it, it’s hard to get sometimes. And they’re relatively invisible, partly because people that aren’t our nearest and dearest are probably only going to see us on our better days, or because we’ve saved our energy and sacrificed other activities in order to do what brings us into contact with them. I say “relatively invisible” because I know the people close to me can tell by looking at me that I’m having a bad day, they can even notice sometimes that I’m tiring before I’ve allowed that into my awareness. But even on these days, if I do come into contact with someone who I haven’t’ seen for a while, I’ll still get those dreaded three little words: “You look well.”
Living with ME/CFS, Fibromyalgia, and Lyme disease
So why do these comments bother us so much? There are so many levels.
First of all, I don’t know one person with this kind of illness who hasn’t experienced some disbelief from somebody important to their well-being at some time or other (whether it was a health professional or a family member). Not being believed when your life has been snatched away from you because of ill health is crushing! It’s hard enough to deal with a chronic illness that has no cure, without feeling judged for faking it somehow. We’re desperate to be understood because we’re desperate to find a way out of our suffering — we really just want our life back.
Then, when we come to terms with the illness we realize that life can’t be put on hold until we’re better. We start adapting, pacing, managing, in order to squeeze a little bit of life out of our day. We do things despite the pain, fatigue and brain fog that would have a healthy person resting up in bed. It’s not easy, but it’s our only life. We need some kind of recognition for the heroic nature of what we achieve, despite all obstacles. At the very least, we don’t want our challenges to be minimized, ignored or disbelieved.
When what we’re dealing with isn’t recognized and acknowledged, we can find ourselves pushed into doing things that could involve a very severe payback. When our limitations aren’t acknowledged and understood our “no” can be mistaken as a personal rejection. There are so many unpleasant consequences of being misunderstood, as if life isn’t hard enough!
“You look well.” Three little words with the power to immediately put us on edge. So how I deal with them?
First of all, let me share that, even though I am really quite well now comparatively, those three little words still push my button and make me feel irritated and uncomfortable. However, I’ve learned to accept it, recognize it, and then carefully choose how to respond, instead of my initial impulse to react defensively.
This has come up for me so many times that I’ve had to think it through carefully and plan my possible responses. Now, they’re very well practiced. It helps me to consider the following three questions before I respond:
1. What is the intention behind the comment?
What I’ve come to realize with a little bit of distance is that most people say these words because they are worried about you and relieved to think you might be doing well. Illness scares people, especially when it’s chronic. They say these words to reassure themselves. Their intention is positive, a simple form of flattery. For the majority of people those words have no more meaning than that.
2. What meaning am I adding?
Because of unfortunate experience, we can be quick to add the meaning: “They’re going to judge me,” or “They don’t believe I’m really ill.” I have to recognize that I am creating the meaning that is making me feel uncomfortable right now. I tell myself that whether or not somebody judges me says more about them than about me. I choose not to waste my energy worrying about what the kind of people that are going to judge me are going to think. I choose to take this interaction as new and fresh and not pollute it with meaning from all the people I have encountered in the past.
3. How important is it that this person understands?
Subscribe to the World's Most Popular ME-CFS Newsletter (it's free!)
I then consider how much I need this person to understand. Are there going to be any consequences for me if this person misunderstands? I could waste a lot of energy trying to help everyone understand when, in fact, many people are just going to choose not to. Instead, I focus on what I need in order to be able to stay as well as possible. I’ll communicate more fully about my true well-being only on a need to know basis.
My standard responses:
When my parents’ friends, who I only see occasionally, say “You look well,” I realize they are just looking for reassurance. It doesn’t harm me in any way to give them some attention, so I’ll respond with an elusive:
“Yes, I’m having a relatively good day today,” or perhaps “It’s not one of my best days today, but I’m not bad. Thank you!”
With colleagues at my old part-time job, I used a similar response, but I’d add something along the lines of, “It takes a lot of careful management to be well enough to work, but I enjoy coming here.”
Those who wanted to judge would still judge, but others would ask what was involved.
If it’s a good friend, who hasn’t seen me for a while, and I want them to understand where I’m at, I’ll let them know how I’m feeling and all the work I put into my self-help in order to have enough energy to spend some time with them. If somebody who I see regularly repeatedly irritates me with that statement, I may say something like:
“The people closest to me can tell from looking at me how unwell I am, but generally, this is an invisible illness. It can get frustrating to be told you’re looking well all the time when you’re feeling dreadful. I prefer being asked how I’m feeling.”
With my nearest and dearest:
Although my nearest and dearest are unlikely to use those three little words, there is a fine balancing act between needing to be understood and not wanting to burden them. I always try to balance being clear about the ways I might be suffering, with the fact that I’ve got lots of ways of coping, and that I consider myself to be doing an excellent job of managing it all. That way, when I have a day when it’s all too much, I can share that too, because I know that my nearest and dearest respect that I can cope most of the time, and that it’s OK to have a blip.
Managing your own thoughts
For me, coping with these three little words is much more to do with managing my own thoughts than what to say to people or what people might be thinking. I need to accept that not everybody is going to understand. I need to shake off the harm that has been done in the past by disbelief and misunderstanding, and allow each new interaction to be only about the now. I need to focus on my boundaries and what I need to communicate to people to get my needs met. It’s good to have one or two people with whom I can fully share what I’m going through; it feels good to be understood. But in general, to quote the wise and wonderful Wayne Dyer:
“What other people think of me is none of my business.”
This article was first published on ProHealth.com on November 13, 2018 and was updated on June 17, 2020.
Julie Holliday, ProHealth’s Inspirational Editor, is a holistic life coach and writer committed to helping people take back control from energy-limiting chronic illness to live a more relaxed, balanced and fulfilling life. Julie loves spending time in nature, growing her own vegetables and spends as much of her day as possible in a comfortable pair of yoga pants. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter, Facebook and Google+.