So You Know a Dyke with CFS...
This is my personal list of "do's" and "don't's" for my friends who might find some guidance helpful in relating to my CFS (Chronic Fatigue Syndrome):
DON'T expose me to your company if you believe CFS is psychosomatic, "yuppie flu," or anything less than one of the most frightening, tragic, and debilitating diseases of the 20th century. Because it is.
DON'T think you're being supportive by telling me how you get tired too sometimes after a hard day at work or a long bike ride. The fatigue (read "debilitation") experienced by people with CFS is unlike any kind of physical or emotional state experienced by able-bodied people, even after they've run a marathon. This kind of comparison is as offensive as discussing your experiences with dieting to someone with a wasting disease. Just don't. If you are able-bodied, you have no physical context for understanding my experience, so don't think you do.
DON'T suggest that my symptoms might not be so severe if I didn't dwell on them, cater to them, give them so much attention, let them run my life. In fact, that is the very philosophy that led to he collapse of my health in the first place. I maintain what vitality I do have by careful attention to even small changes in my body.
DON'T try to be helpful by suggesting other "normal" factors which might be causing my symptoms. Yes, no doubt there are other factors - there always are - but I am an expert on my disease and I am on intimate terms with my symptoms. It is arrogant for you to try to interpret them for me.
DON'T spend time with me unless you are grown-up enough to understand that the desires of an able-bodied person should not be weighed in the same balance with the needs of a disabled person. Forget your assertiveness training, your skills at compromise, or your "getting to yes" negotiating expertise. If I need to leave an environment because it is toxic to me and you want to stay, it is not a solution for us to stay fifteen more minutes. Those fifteen minutes may result in my spending the next two days in bed. I get my way, because the stakes are infinitely higher for me. If you think this is about my control issues or power tripping, get some help with your ableism.
DON'T say things to me like, "God, I don't know how you can stand to live without [your career, your home, swimming, running, eating favorite foods, being able to travel, being financially independent, etc.] ever again!" Don't say, "Boy, I could never give up [my career, my home, swimming, running, eating my favorite foods, being able to travel, being financially independent, etc.]" Our losses are our losses. They don't signal fortitude, sacrifice, or strength of character. We deal with them in healthy or unhealthy ways, and sometimes that changes every hour. They are our losses, and the only appropriate response is heartfelt sympathy and sincere offers of assistance. A little political activism would not be out of place either.
DON'T punish me with your frustrations at the inconveniences I cause you with my illness. Yes, in the short term, you may get me to "pass" as able-bodied or even take care of your bad mood, but in the long run, I will decide you are an ableist asshole. I have no choice but to live with these inconveniences and disruptions 24-hours a day. If you choose to be in my company, you can assume responsibility for temporarily accommodating my disability.
DON'T date me if you want to think of my illness as some footnote to my personhood. It is a central part of my identity now, just as being lesbian is. We all know how icky it is to be around straight people who tolerate our lesbianism, but who flinch every time we bring up the subject of our lover. It feels just as bad to be with friends who know I have CFS, but who become stiff and uncomfortable whenever I incorporate my experiences or needs into our interactions. If you can't take the heat, get out of my kitchen.
DON'T ever use the word "crazy" in relation to the confusion, seizures, extreme irritability, panic attacks, or periods of being emotionally overwhelmed which are part of the cognitive losses and neurological disturbances of this illness. I can identify and name these states and take responsibility for them. I have a whole battery of information and arsenal of strategies for coping with them. In fact, I see dykes acting out all the time from food allergies, blood sugar reactions, the effects of alcohol and caffeine in their systems - and in my experience, those of us with CFS are far more aware, more accountable, and more forthcoming about mood swings and emotional states than so-called able-bodied dykes who have the dubious privilege of still abusing their bodies.
DON'T persist in pressuring me about an activity once I have identified it as something I have reservations about because of my illness. We folks with CFS often question our reality because of the elusive, "moving target" nature of our symptoms. Because most of us are experiencing some degree of social isolation, we are especially vulnerable to pressure which is accompanied by even a subtle threat of further marginalization. And it's always tempting to see if we can pull off a "normal" activity. But the price of being mistaken can be months of relapse. It's not worth it. "No" means "no." Don't presume to know my limits. They change every day, anyway.
DON'T attribute your lack of sympathy to my attitude. This is a standard defense of bigots. Racists are always sure that there are right ways to be African American and wrong ways. Sexists believe that harassment and discrimination only happen to women with bad attitudes. Ableists are always convinced that there is something in the attitude or the behavior of the disabled person which is causing their own irritation or aversion towards us. Nothing unmasks your ableism more than this point of view toward me. I have to fight my way through a toxic, apathetic, and even sadistic world every day. I am assertive to militant about my needs, and I haven't got the energy to coddle ableist people. You will not see me looking helpless, tearful, or pathetic. Someone suffering for a few weeks with a flu virus may be able to indulge or even luxuriate in their temporary helplessness, but those of us who are sentenced to chronic illness for the rest of our lives must make other adjustments - ones which should be valorized not excoriated. I need an ally, not a rescuer. If you can't feel empathy for an embattled warrior, it's your ableism and not my attitude. Period.
DON'T think I'm being manipulative when I have to excuse myself from a stressful dynamic. Most people will check out of an argument when it reaches the level of screaming and throwing objects. Because of this disease, I experience much lower grades of conflict as being that stressful and life-threatening, and I have to check out. I am accountable in my relationships to people, but sometimes it takes me longer, with more periods of time-out, in order to work through a difficult issue. Don't make me hang up on you.
DON'T suggest new supplements or treatments unless I have asked. Like most single dykes with the disease, I have experienced a drastic and terrifying reduction of resources. And like most women living on very low fixed income, I have had to evolve a highly refined and customized process for cost-benefit analysis. It has taken me years to fine-tune my regimen of supplements and foods. Yes, I am sure I would benefit from massage, blood tests, medical care, organic food, acupuncture, and chinese herbs, but I can't afford them. Unless, of course, you want to buy them for me. Classism and ableism go hand-in-glove, and in case you don't know, health care in this country is a privilege, not a right.
DON'T mistake my periods between relapses for recovery. I have plenty to deal with regarding my own ups and downs. Don't make me have to cope with your hopes and expectations for me. What I most need from you is the reassurance that I am a perfectly wonderful friend even at the lowest point in my health, and even if I never get any better.
DON'T accuse me of being jealous of your health when I confront your ableism. I wish that my able-bodied friends were more aware of how their able-bodied privilege translates into ignorance, arrogance, and bland sadism. The issue is not my envy of your privilege, but your abuse of it.
DON'T make me take care of you around cancelled plans. Yes, I'm sorry whenever that happens. I do try to know what my limitations are, and frequently I err on the side of conservatism just so that I won't have to change them or cancel later. But every now and then I will say I can do something that I can't. Too bad. But the whole life I had planned for myself - my career, my home, my family, my social life, my sports, my hobbies, my standard of living, my quality of life - have been permanently cancelled. I just can't get too into your pain about a picnic or a camping trip. And you know what? I'm not even going to try.
DON'T think I'm kidding when I talk about suicide. The depression that accompanies CFS has been likened to the depression that AIDS patients experience in the last two weeks of their lives. With CFS, it goes on for years. Ask me. I may have actually scavenged a piece of garden hose for the exhaust pipe. I may have stockpiled barbiturates. I will probably tell you, because I am hoping someone will help me. If you care about me and I am talking about suicide, consider stepping up your support. I'm not kidding. CFS patients do take our own lives, and we do it a lot. And part of it is because nobody seems to give a damn that we are losing or have already lost what we used to consider our lives. Give a damn.
DO make an effort to learn something about the disease on your own. There is a ton of information about CFS in the libraries and bookstores - first-person narratives, medical and alternative healing manuals, cookbooks. There are all kinds of websites on the Internet. There is a CFIDS Foundation and a CFIDS Institute, and they will send you free pamphlets.
DO acknowledge frequently that I am disabled. I have to run as fast as I can to stay in place, or even just to fall back at a manageable rate. I like to have that acknowledged. Whenever I do participate at a "normal" level in an able-bodied event, it has probably taken a lot of advance planning. Acknowledge that. Appreciate it. I pay higher dues, and I like to be credited for it. Even though I may look like a slacker to the able-bodied world, remember this: I am operating at the absolute top of my physical bent all the time. I am probably working harder than any able-bodied person you know. Just because I don't mention it, doesn't mean I'm not struggling.
DO ask me how I am when we get together for an activity. That lets me know that you are willing to be my ally in confronting the challenges I am meeting during the time we are together. I have come to learn that when you don't ask, it means you don't want to know. It means that your plan is to grant me the "privilege" of being considered your able-bodied peer for the duration of our activity. In other words, my illness will only be real for you if I bring it up. Experience has taught me that this attitude results in your equating my mentioning of symptoms with my causing those symptoms. And you will oppress me accordingly.
DO adopt a CFS awareness when you are in my company. No, it's not codependent. It's supportive. And courteous. Why should the member of an ethnic minority be the one to confront the racism all the time? Well, it's her survival issue, but frankly, that's no excuse for her white friends to let her do all the work. A racist world hurts us all. And so does an ableist one. And a toxic one. I love it when my companions allow me to shift some of the burden of my chemical sensitivity vigilance onto their shoulders, even for just an hour or two. The analogy I use is that of traveling with a disabled child. If you want to make it clear that the child is my child and therefore my problem, because you're only interested in my company... well, it makes me choose between my allegiance to my child (myself) or you. Guess who's going to win.
DO confront your superstitions about denial and immunity. If you are afraid to imagine yourself in my shoes, to really hear my experience, or to adopt a CFS consciousness about toxins and stress levels when you are in my company - look at the reason why. Are you afraid that you might become vulnerable to the illness if you let too much of its reality into your consciousness? That is a very human response, but also a very ableist one. If this is your truth, then stick to the company of other able-bodied people. Don't make me deal with it.
DO make it easy for me to say, "I need to leave" or "I need to lie down" or "I need to pull off the road/ trail and take a nap." When the plan changes abruptly like that, see how fast you can get behind it, instead of seeing how guilty or ashamed you can make me feel or how difficult you can make it for me. These disruptions are normal for me, and I love it when my companions work together to minimize the social stigmatization that results from my meeting my needs.
DO offer support. Offer whatever you can. The gesture is often the most therapeutic part. I don't have a bathtub, but I experience chronic muscle pain and I love it when friends invite me to come over and take a bath. Can you cook a meal on a really bad night? Can you be there for 20-minute support phone calls? Ask me what kind of support I would like. I understand that doesn't mean you can give it. I'll just be stunned that you asked. In seven years, no one ever has, but I do keep hoping.
DO clean up your car/ apartment/ clothing. Remember what I have told you about my allergies: fabric softener, essential oils, perfumes, bleach, any and all pesticides. When you keep "forgetting," I get one of two messages: Either you don't believe I'm really sick or you don't care. I never get the message you just forgot. That's your fantasy... and a function of your able-bodied privilege.
DO tell me how amazing I am. Tell me a lot. Praise my coping skills, my achievements, whatever I am proud of. Praise my ingenuity, my resourcefulness, my optimism (I'm still alive, aren't I?), my courage. Believe me, people with CFS hear "slacker," "whiner," "nutcase," "drama queen," "control freak" a dozen times a day in a dozen subtle and not-so-subtle ways. No matter how much you praise me, it can never be too much.
DO stand up for me when I'm not around. You will probably have more credibility than I do. Spread the word about CFS. Confront others on their ableism. Talk about the crying need for support services similar to those offered by the AIDS networks in our communities. Stop others from blaming the victims. When you hear charges that I am exaggerating my symptoms, set the record straight. The symptoms that show, the ones that I talk about, are just the tip of an iceberg.
DO clip this article and copy it and pass it around your workplace.
And if all of this seems too overwhelming to remember, then try this simple formula:
Pretend it's happened to you.
This piece was orginally published in off our backs, Washington, DC.
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- Myalgic Encephalomyelitis