It’s a sad, sad fact that chronic illness and friendships are a dubious combination. Particularly for those living with poorly understood, long-lasting conditions, ‘friends’ often show their true colors right when we need them most.
Our entire perception of reality takes an insidious turn as we watch this vital resource diminish in perfect disharmony with the ever-increasing need.
Recently, I had the experience of a friend getting overly enthusiastic about being on my side, claiming that she was on “team Bridget.”
No, she did not offer unsolicited advice — something I appreciated, and our friendship did not consist solely of conversations about my health. In fact, we had lots of good laughs together, probably because I mainly avoided the health topic with her.
As I had long suspected, this person knew nothing about ME/CFS even though I had given her the info to this blog and had asked her repeatedly to look up information and I even gave her specific terms to research such as “spoon theory” and “energy envelope.” She claimed to have looked this information up, but evidently it changed nothing.
Meanwhile, “team Bridget” continuously pushed me beyond my physical limitations and refused to learn anything new. When I had to cancel our plans last minute during a particularly bad spell over the Fourth of July weekend, she became aggravated with me, telling me I was having a ‘pity party,’ a terribly offensive thing to say. She went on to tell me to “pick my battles,” which made no sense. I told her I never “picked” the battle of untreatable illness.
I am still reeling from this blow. However, I unfortunately am not alone. Chronic illness can and will reveal the true nature of your friends and my recent experience is probably not all that unique.
I have tried so hard for so long to get people to understand this illness and I’ve found the endeavor mostly fruitless.
Another recent experience of mine: a woman asked me about my ME/CFS and I, being entirely fed up with attempting to educate others, told her to look it up. Her response?
“I want to hear all about it from you!”
The rage that burned deep within my core was downright homicidal.
“I want to hear all about it from you” is what you say to someone who has just gone on a trip somewhere interesting, NOT to someone who has suffered years of chronic, misunderstood, mislabeled and misdiagnosed illness. Let me also add that this came with no “gee, I’m sorry you’re sick” or anything like that. Just morbid curiosity at my cost.
Even the smallest morsel of sympathy can make a world of difference for someone suffering a misunderstood illness. It’s extremely discouraging to know that there is some good, accurate, readily available information out there and yet this disease is virtually unknown to the general population.
I think one of the most important and jarring pieces of information is that ME/CFS is an AIDS-like illness. This claim is backed by Dr. Nancy Klimas, who has worked with AIDS and ME/CFS patients since the 1980s.
Would you tell an AIDS or cancer patient, your hands clasped in anticipation, that you want to hear all about their illness from them?
Yeah, I didn’t think so.
That woman’s response was a disgusting example of the ongoing ignorance around ME/CFS. It was a stark reminder of how little has changed since the mid-1980s, when the illness was first discovered and given the detestable name of chronic fatigue syndrome.
Throughout my years with ME/CFS, I’ve often felt like I’ve reached out for gentle, helping hands and instead received a clobber over the head. If folks don’t want to read or hear about ME/CFS, I’d suggest researching the more prevalent Long Covid, as the two afflictions are virtually identical. Almost all of us know at least one person who suffers or has suffered with Long Covid. Getting hit with a prolonged illness does not mean we deserve to have our social circles shrink.
Fortunately, I do have some friends left over. Sometimes I need to remind them that I’m not well and maybe ask them if we could stop walking for a few minutes. This is ok with me. My illness is invisible, and I understand that it’s easy for others to see me out and about and lose sight of the fact that I am not in peak health.
The best thing that a friend can do is empathize. Not with “team Bridget” or any such nonsense, but instead with self-education and just simple empathy. In recent weeks, I have tried to stem my anger by thinking of it as ditching toxic people rather than as losing friends.
Nonetheless, it hurts. For me, it’s even more harmful than being dismissed and belittled by doctors, and most of us are familiar with how awful that experience can be.
If you have a friend with ME/CFS or any other poorly understood condition, please don’t be over-enthusiastic about jumping into a hero role. Rather, just listen, think of a time you had the flu, think about how it would impact your life if you felt that way every day for months on end, and empathize.
–Bridget O’Shea