[This piece was originally published in off our backs, Washington, DC.]

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 ME/CFS (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis):

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 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 able-bodied folks 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 people 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 women 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-hand, 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. Check out Solve ME/CFS.

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 share this link 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.

A FINAL WORD: For decades, the medical community has pretended that ME/CFS is a psychological disorder, even in the face of decades of discovery of biomarkers. There has been intense, ongoing pressure and lobbying from insurance companies to refuse to accept it as a disease, because treatment is expensive and lifelong.  Instead, patients have been  and still are "prescribed" CBT ("Cognitive Behavioral Therapy") and GET ("Graded Exercise Therapy"). Both of these degrading, so-called treatments have resulted in death. In fact, until very recently, these were the recommendations of the Center for Disease Control (CDC). Today, with rising numbers of Long Covid patients, whose symptoms are nearly identical to those of ME/CFS patients, our illness and disability are finally being taken seriously. We are finally getting apologies from the medical community, including the CDC, which refers to their history with ME/CFS as "shameful." Ironic how we were not allowed to donate blood, but it was "all in our heads."  How does that work? #theyknewtheyalwaysknew

In 1988, I flew to Buffalo to attend the first conference of International Women Playwrights, the organization that would later morph into the International Center for Women Playwrights (ICWP.)  I was thirty-six years old and had just come out publicly as a lesbian and as a playwright in 1986. At that time, I had officially given myself the name “Carolyn Gage,” naming myself after Suffragist Matilda Joslyn Gage, whose unwillingness to make compromises had resulted in her being written out of history. At this historic conference and so newly emerged from my chrysalis, I experienced one life-changing encounter after another with playwrights who seemed like goddesses to me.

This is a record of my impressions and my experiences of that conference, looking back from a distance of thirty-four years. I am autistic, the conference was overwhelming for me, and these memories are highly subjective. Whatever interpretations, inaccuracies, or projections this paper contains, they are my own.

At the first meeting of all the attendees, we were asked to stand up, one by one, and state our name and the location of our home. My heart pounding, I stood up and said, “Carolyn Gage, Lesbian Nation.” Lesbian Nation: The Feminist Solution was the title of a book written in 1973 by the radical-lesbian, feminist author and cultural critic Jill Johnston. Most Western lesbians in my age cohort would have been familiar with the phrase, if not the book. In announcing my sexual orientation as a homeland, I was not only making a statement about bonds of lesbianism transcending and transgressing boundaries of citizenship, but I was also putting out a challenge to the lesbians at the conference to identify ourselves so that we could find each other. If I am remembering rightly, there was some programming at the conference for lesbians, but it was not until the last day—which would be too late for us to socialize or organize. Other women began to claim lesbian status in their naming, but more to the point, when I sat down to eat lunch, my table began to fill up with the lesbians.

And what lesbians! Phyllis Jane Rose, Sandra Shotlander, and Eva Johnson were just a few who made a tremendous impression on me.
 

I remember a Russian woman who had a male interpreter, and what a stir that caused… a man sharing the podium and daring to translate the words of a woman! Separatism was in the air.  Eva Johnson, an out-and-proud, Aboriginal Australian playwright, performer, poet, theatre director and producer spoke about her work as a director in Australia. I remember her talking about producing a play about the colonization of her people. In her production, all the white male roles were performed by Aboriginal women. She told us that she had been challenged for this casting choice. I have never forgotten her explanation: She asked who better understood the mind of the white male colonizer than the Aboriginal woman. Within a year I had founded a lesbian theatre company named No To Men, where women would play all the male parts.

Eva changed my life in another way. She was a featured speaker, and I remember how, before she began her talk, she requested that all the men leave the auditorium. Many of the men at this historic women’s conference were from the press—international and national, and they could not believe that Eva was ordering them out! One of the men in the audience was the interpreter for the Russian playwright, and passionate pleas were made to allow him to stay. But Eva would not budge. I had never in my life seen a woman exercise so much authority. It took my breath away.

Eva belongs to the Malak Malak people of the Northern Territory, and she is a member of what is known as the “Stolen Generations” in Australia. Between 1910-1970, the Australian government forcibly removed indigenous children from their families as part of a policy of “assimilation.”  Some of the children were adopted by white families, and many remained in institutions. They were taught to reject their heritage and forced to adopt white culture. Eva was taken from her mother at the age of two and placed in a Methodist mission where she was kept for eight years. At the age of ten, she was transferred to an orphanage in Adelaide, and would not be reunited with her mother for three decades. As I remember, her mother was in a nursing home, and she saw her daughter on television and recognized her. This was the story she was going to tell. (She wrote a poem about her mother. You can read it here.)

That day, standing on the stage in front of hundreds of playwrights, academics, and members of the press, she stared down the protesters, declaring simply “This is women’s business.” I have never forgotten that. I can still hear her voice in my head. It had never occurred to me that women had a right to our own spaces, or that we had “business” that entitled us to that space. I was electrified.
 
Eva Johnson’s work reflects her identity as part of the “Stolen Generation,” and it also addresses cultural identity, Aboriginal Australian women’s rights, land rights, slavery, sexism and homophobia. She lit up the conference with her joy and her exuberance, which were inextricably connected to her awareness of her history. She is a living embodiment of Alice Walker’s affirmation, “Resistance is the secret of joy.”

I remember eating breakfast with Nigerian playwright, Onuekwuke Nwazulu Sofola (aka Zulu Sofola), who was teaching for a year at the State University at Buffalo. She wanted to talk with me about lesbianism, and I remember that she asked an unusual question. At this point in my life, I was very focused on the ways in which lesbianism was, in the words of Jill Johnston, the “feminist solution” to patriarchy and its abuses. Onuekwuke’s work was deeply engaged with issues of women’s subordination and violence against women, and I remember thinking that her questions reflected her engagement with this issue of “feminist solutions.” She told me she had been thinking all night about what she had heard about lesbianism at the conference. Suddenly she leaned toward me and asked me, “But when the women break up, it must be terrible…?” I affirmed that it was, and in my (vastly limited) experience, this was because the potential for intimacy between women was so much greater than that between a man and a woman. I remember she nodded and sat back. Something had been resolved in her mind. I remember thinking “This woman must love women so much, that she would see this pain of separation as the central issue associated with lesbianism.” I felt profoundly chastened and also deeply moved, and I never forgot that exchange.  

And then there was Toni Cade Bambara. Wearing a bright red, leather kufi hat and African print pants, she burst into the room, swung up to the podium, and delivered a dramatic and refreshingly non-academic presentation. I remember she opened her talk with a vivid and affectionate tribute to the women who had been influential in her life, the “ladies in the black slips,” as she described them—the African American women in her family who would hold forth in the kitchen on Sunday mornings. At that time, I was not familiar with her work. I went home from the conference and read everything she had written that I could get my hands on. Twenty years before “diversity” and “inclusion” became buzzwords, she was writing “One’s got to see what the factory worker sees, what the prisoner sees, what the welfare children see, what the scholar sees, got to see what the ruling-class mythmakers see as well, in order to tell the truth and not get trapped.”

Toni had edited one of the first collections of essays, poetry, and short stories by African American women, The Black Woman: An Anthology.  It was a response to the male “experts,” both black and white, whose sweeping generalizations about Black women made no allowances for the voices of those women themselves. In her second anthology, Tales and Stories for Black Folks, Toni included selections written by freshman composition students along with works by Alice Walker and Langston Hughes. The point I want to make is that the opening of her talk was just a glimpse into her radical approach to art and to activism—an activism that perpetually widened the circle of community as she defined it.

On the second day of the conference, the lesbians had organized a gathering, and Toni showed up for it. One of the orders of business was to collect signatures for a conference resolution condemning Section 28, which was the legislative designation for a series of laws across Britain that prohibited the “promotion of homosexuality” by local authorities. It had been introduced by Margaret Thatcher’s conservative government and had gone into effect earlier in the year. The vague and hateful language of the bill translated to widespread censorship and paranoia across the UK, especially among educators. I remember that Toni took on a leadership role, educating us about the most effective way to go about achieving our goals, and she did this with mind-blowing humility and respect for egalitarian process, never once pulling rank, even though she was clearly the most experienced activist in the room, and possibly one of the most experienced in the world.

Toni left an indelible impression on me. She personified a level of authenticity and integrity that I had never experienced personally. She was present… I mean, 100% in mind, body, and spirit. She had a power that was palpable. When she stepped up to that podium, I felt as if the room had gone from grey to technicolor, that we had all been half-asleep and now were fully awake. In her essay “What It Is I Think I Am Doing,” she had written:
 
…when I look back on the body of book reviews I’ve produced in the past fifteen years, for all their socioideolitero brilliant somethingorother, the underlying standard always seemed to be—Does this author here genuinely love his/her community?
 
She walked her talk, and I feel very grateful to have had the opportunity to meet her and hear her in person. And I appreciate the opportunity to revisit my memories from this conference now as an old woman, and to be able to see so clearly how the influence from these remarkable women was taken up in my bones and how my desire to emulate them laid the foundation for my lifework.

International Women Playwrights: Voices of Identity and Transformation- Proceedings of The First International Women Playwrights Conference, October 18-23, 1988
by Anna Kay France (Editor), P.J. Corso (Editor)

Records held by former University Professor at Buffalo, Anna Kay France, as related to her involvement in the 1st International Women Playwrights Conference(IWPC) held at the University at Buffalo, October 14-23, 1988. Includes correspondence with national and international playwrights, session transcripts, and papers from the International Center for Women Playwrights.
https://findingaids.lib.buffalo.edu/repositories/2/resources/737
https://dspace.flinders.edu.au/xmlui/handle/2328/7978