T.H.I.N.K.

::NOTE about this week's extra essay:: Today marks the day when some are responding to the call of M.E./CFS Blogger Nation to blog about M.E. Specifically, the theme for today is "What is ME/CFS doing to you, How are you affected day to day, and What are your hopes for the future?" This essay is a response to that call. If you're not in the mood for serious or don't want to hear the answer to the questions posed, please skip this essay.

Many of us in the ME community experience friend and family flight when we become disabled with M.E. Let’s face it: ME is difficult to understand. We struggle to comprehend what is going on with our bodies and to cope with the cognitive losses. Even the people who live with us and see its impact on a daily basis have a difficult time understanding the often-varying nature of the illness. And so perhaps it is unreasonable of us to expect people who do not live with us to take the time to learn about our diagnosis. (Heck, our partners themselves may not care enough to take the time to learn about our illness of possible treatment options.)

It would be nice, however, if people we care about had the common courtesy to ask us how having M.E. affects us before making pronouncements about why we are sick or whether we are truly as sick as we say we are. I’ve asked around and so far only one person with M.E. that I've spoken with has had anyone ask her about the impact of M.E. We’ve been reassured, however, many times over by people who, having learned of our illness, say, “Oh, I get tired too.” (Right, and you recover, but not because you are morally superior and we are morally inferior or psychologically crippled.) We have also received all sorts of unsolicited advice, most of which probably stems from a cursory glance at an article about some piece of crap research on M.E. (Meaning, research with serious flaws in sample selection and/or experimental design.) 

Rather than behave with common courtesy, it appears that people seem far more apt to blame the person who is ill with M.E. People also flee: friends, family, and partners alike. They flee for whatever reason they are able to muster, but flee they do. 

Social scientists and medical researchers report that social support is important for our health, but when we need our friends and family the most, most are nowhere to be found. Worse yet, rather than seeing that fleeing behavior as a short coming of their own to own, it appears that people sometimes palliate their conscience by reaching into their stores of information about the ill person and find a way to blame their fleeing on that person--that is, that person’s flaws as a person. Flaws that they readily accepted when the now disabled person was able to attend dances with them, meet for dinner and conversation, watch a ballgame, engage in small talk over coffee after church, help them move, babysit their kids, or pick out a new outfit at the mall. 

I have seen this “It’s not your illness, it’s you” theme recounted by so many M.E. sufferers that I cannot blame my own friend and partner flight on some gross flaw I possess as a person. None of us is perfect. We are all works in progress. And yet the reciprocity I thought existed—where friends accept each other’s flaws—appears to conveniently fly out the window the minute the realization that chronic, debilitating illness has walked through the door.

And it’s not just M.E. It’s any poorly understood illness that has no cure, no end in sight. A friend who has intracranial hypertension said that she has had people when they’ve learned of her illness say to her, “Oh I get headaches too,” when in fact intracranial hypertension is life threatening and their headaches are likely not. Most recently, she had a long-time friend end their friendship because supposedly she was not sufficiently excited for her friend when the friend announced that she was pregnant. My friend was in a tremendous amount of pain at the time she heard the news and tried to respond as best she could. It appears that people whose health is relatively good have little to no appreciation of what a seriously ill person, particularly one who “does not look sick” is going through.

I feel for my friend with intracranial hypertension because I understand the pain that comes about when friends make judgments based on their flawed perceptions of or misconceptions about a sick person’s behavior.

It’s sad to lose or have to let go of people who remained after friend flight because they cannot comprehend your reality and make unflattering and faulty assumptions about your behavior and your motivations. You use the energy to have a conversation with someone and, according to them and their imaginary medical or neuropsych degree, they witness that your cognition appears to be in great shape and your ability to weather human interactions and drama is not compromised. They see you out and about for a few minutes and assume those few moments represents what your life must be like: active. You look healthy and so you must be healthy. You are sick or as sick as you say you are only because of you believe you are.

However, when a mostly homebound disabled person, who has come to believe that most of the people she once knew are absent from her life because they are unable to deal with their own mortality and the discomfort they feel in the presence of someone with a debilitating illness or because they are operating under an “out of sight out of mind” mindset (common beliefs by ill people who choose to give friends the benefit of the doubt), learns that the same people have been talking smack behind her back, it is totally dispiriting. It wrecks your belief in the basic goodness of others. Based on what I’ve learned in the years since becoming disabled, it’s become clear to me that far fewer people THINK before speaking than I ever imagined. That is, people, particularly when it comes to talking about those of us with M.E., rarely ask themselves, “Is this True, is it Helpful, is it Inspiring, is it Necessary, is it Kind?”

When people diminish you because of your health or the treatment options you’ve chosen, when people use armchair psychology to make light of your physical reality, when people abandon you (even while keeping up some appearances), a disabled person’s partner also feels the impact. A disabled person’s partner is already grieving the loss of the life they once had, is already having to cope with watching a partner suffer day in and day out, and on top of that they must also bear the behaviors and attitudes of others. Yet, I wonder: Do people who make these sorts of pronouncements consider the possibility that they might have helped cause stress fractures in a relationship already stressed by the onset of disability? I think not. 

Indeed, right before I learned four years into total disability that a couple of dear friends were telling people that my M.E. was all in my head and they were choosing not to visit me because they didn't want to enable me (and if people didn't visit me, I'd get over my self-imposed illness and reenter the world), my partner came home and asked me, “Do you think your illness might be in large part psychological?” She could somehow ask this question even though she had seen me through some of the worst of times. (Times where I had to eat two out of three meals lying flat on my back. Times when even a pillow represented too much of an incline and left me feeling oxygen deprived.) She had seen me bounce back a bit from how sick I’d become when first disabled, and then she saw me go quickly down hill after helping my mother move to a new home near us after my brother died. (I’d pushed myself too much and was sicker than I’d been before.) 


My partner asked this question about five months before she left me for her healthy best friend. Given her real life experience of my illness, I have had to ask myself, "How could her question not reflect her need to flee a painful reality?" And “Would she have come up with that question on her own without a little help from her friends?” Well, luckily for her, but devastating for me, I've since learned she had some family and plenty of our former friends, people who could now be considered her “friends” only, to help her ignore her experience of me and to encourage her to use the “get out of jail free” card--i.e., writing me off for someone else--that she was looking for to alleviate her suffering. (I'm speaking of the suffering that comes with watching a loved one suffer. Something I unfortunately understand all too well having watched my brother suffer from and eventually die from AIDS complications and from watching my mother suffer with chronic illness in the last 10 years.) 

I'm not excusing her behavior nor am I trying to blame her choices on anyone else. (I feel compassion for her because of what she experienced.) I am, however, pointing out that talking smack about someone who is ill just might add to the suffering of both the disabled person and her partner. 

So, “What is M.E. doing to me?” In addition to severely limiting my function, M.E. (or people's reaction to it) isolates me and deprives me of not only in person communication and support, but the human touch and hugs most of us need to thrive.

“How is M.E. affecting me day to day?” In addition to feeling ill and struggling just to meet my basic daily living requirements (e.g., getting groceries, making meals, bathing, doing laundry, etc.), the fall out from how people react to M.E. leaves me feeling isolated and alone. For the first time in my life, I feel profoundly lonely at times (and I also thank God for the ability to snatch joy from my life).

“What are your hopes for the future?” When it comes to friendship and a love partnership, I am at a loss. While in the past, I’ve been accused of liking everyone, of being very naïve, of lacking discernment, I thought I was doing a good job of surrounding myself with good people. The friend, partner, and family flight experienced by so many people with M.E. suggests to me that the friend and partner flight I experienced is not all about me, not all about my flaws, and not all about my inability to discern. While I can’t imagine ever again trusting 3D people to be true friends (at least, I can't imagine ever trusting someone who has not experienced debilitating chronic illness), what would be worse than the isolation brought on by others reaction to M.E. would be my inability to trust again if ever well. So my hope for the future is for all of us suffering with M.E. to regain our health, and for those of us who have experienced friend, partner, and family flight, to learn to trust in people once again. Without trust, our 3D isolation would continue.  

Life graces us with life lessons, and I keep looking for the pony in the pile of relationship shit. And aside from learning to accept fleeing friends, partners, and family for who they are and where they are, I have yet to figure out how being profoundly disappointed in people, how learning that so many people are nowhere near as kindhearted as I once thought, could be of benefit in life. It makes no sense, particularly because we are social animals. The only future that makes sense to me now is one where I get well and help and/or befriend 3D people who are disabled and isolated.  

I know what I've written is True; I hope it is Helpful to people with M.E. who may be blaming themselves for friend and family flight; I also hope what I've written Inspires some people to be kinder in the future; I believe it is Necessary to write about our marginalization and abandonment so that people have an opportunity to wake up to the additional and unnecessary suffering that many people with M.E. endure; and I have faith that speaking the truth about this phenomena (while not naming names) is a Kindness. Sometimes, it's important to shine a light on unpleasant aspects of human nature. I feel concern for the people who treated me so dispassionately when they were ignorant of my reality because I can't imagine that they would want people to undermine them and their relationships if they were very ill and in need of a partner's support. 


If you are a relatively healthy person reading this essay, I hope you will remember that partner, relative, and friend flight is a common experience for people who have poorly understood illnesses, and if a partner, relative, or friend of yours becomes ill, I hope this essay inspires you to reach deep within yourself so that you will be a true partner, a true relative, and a true friend to the people you call friend.