One Friday morning I woke up and my eyes couldn’t open. Through narrow slits all I could see were the rosy mountains of my cheeks. The skin covering my face stretched tightly and my whole body itched, even my bones. I already knew I was sick. For over a month, twice a day I hooked up to an infuser and pumped an antibiotic (Rocephin) through the PICC line inserted into my wrist and threaded up a vein to near my heart. My heart then sent the drug racing through my body to destroy spirochetes. Puffy cheeks, tight itchy skin, and a sensation like poison oak on my bones, however, were new and Clearly Not Right. After looking in the mirror (ghastly shock), I called a taxi to take me to the medical clinic where I was told my doctor had just been called to the hospital on an emergency. The clinic’s Nurse Practitioner would see me. “So, why are you here today?” Her first question caught me off guard. With my red puffed face, I looked like a balloon on a stick. Why the hell was she asking? During the past 18 months my weight had dropped to 96 pounds and people remarked I was lucky to have kept my hair, thinking I was on cancer treatments. I have Lyme disease and other assorted tick-born pathogens. The IV antibiotic was the most recent attempt to kill them.
Glaring at her best as I could with grossly swollen eyelids, I described the obvious symptoms she could easily see herself and concluded, “I’m concerned this is another drug allergy as I’ve had allergic reactions to . . . “ and I recited the long list of drugs I’d already tried with similar but less alarming allergic reactions (some in the same drug category as Rocephin). All these past allergic reactions were written in my medical chart that she held in her hands. “It’s an allergy, but half the people in town have it this year; the pollen count is high. You should stop by the drugstore on your way home and buy some Benadryl.”
Her breezy reply stunned me. My symptoms, I asserted, were extreme and I’d had spring allergies before without such dramatic results and besides, SEE THIS PICC LINE? See my recent history, the list of drugs I can’t tolerate? (Benadryl was listed in the chart as one of my drug allergies.) But none of that concerned the NP. She repeated the Benadryl advice, dismissed me by walking out, and (I learned later from my doctor) wrote in the chart that I was hysterical, probably drug seeking, and had COPD and asthma (without ever examining me and untrue).
I ignored her advice, didn’t buy Benadryl, stopped infusing Rocephin for three days until my doctor was in the office again, and was told that saved my life. Next up in the allergic response was my throat swelling closed; the COPD/asthma she thought she noticed was stage one of this event. Adding Benadryl as the NP suggested would have made it a double allergic reaction and I’d not have survived the weekend.
I’m not writing this for sympathy, or as a warning about the dangers of ticks, Lyme, and drug reactions. I have a more general message: modern medicine is still diagnosing women with wandering wombs AKA hysteria. While normal consequences of being female (e.g., PMS and menopause) are considered medical disorders, many actual disorders suffered by women are viewed as “thinks she’s sick ” even by female doctors and NPs (a reality that still shocks me).
In times of ill health not obviously validated by medical tests and imaging, women encounter the default medical code for being sick while female: hysterical and attention-seeking, or lazy and fat. At 96 lbs, I didn’t meet the latter, so clearly I was hysterical and attention-seeking. These codes may overlap onto validated medical conditions such as cancer, another reality that surprised me as I’ve rather glamorized the acceptance of cancers as a Serious Illness Doctors Respect (although I never glamorize the realities of any health issue; real life is not written by Henry James nor is it Magic Mountain).
My experience isn’t unique and isn't the most outrageous dismissal of serious medical troubles I’ve heard since joining the large community of women with medically belittled health troubles I call the Wandering Womb Society.
One of the more well-known theories of hysteria is the early idea of the wandering womb. What this diagnosis implied was that the afflicted female’s uterus was roaming the body interfering with other areas, resulting in the symptoms that they had. Because of the way the theory is constructed, it could be used to explain ailments in nearly every part of the body. This was thought to have originated with the Greeks and Hippocrates however there are earlier reports of this with the Egyptians. . . . Women diagnosed with hysteria were often seen in a negative light based on the belief that they were faking these symptoms or being deceitful.
Years after being initiated into the Wandering Womb Society (WWS) by a tick bite, I discovered the women’s health underground. I’m able to think clearly enough to write this because of what I’ve learned from other women who are not helped sufficiently by medical providers. I’m alive because my daughter’s bilingual ability led to a job with a feminist health center after graduating with an undergrad degree in theoretical math that didn’t lead anywhere but grad school. She learned to advocate for the clinic’s Spanish-speaking clients and help them decide what clinic services they wished to use. So, in addition to a math nerd daughter, I now had a trained medical advocate daughter and a caregiver.
I needed an advocate and caregiver. Being sick, frail, drugged by microbe and pain killing drugs, and totally altered from my pre-Lyme persona, I had no confidence in myself. The antibiotics didn’t kill enough microbes and the pain meds didn’t kill enough pain. I spent years lying in bed willing myself to hang on, minute by minute. I did everything my regular doctors prescribed, took all the drugs religiously and kept up my non-physically demanding spiritual practices, little else. Local women friends and my daughter managed life details like bill paying, house cleaning, grocery shopping, driving me to medical appointments — everything. They nurtured my spirit by taking me out to my special places in the forest: meadows of knee high wildflowers, boulder-filled creeks, and hidden groves of old growth cedars.
After 8 years of this — always thinking the next doctor, the next drug was what would help me turn the corner towards health — I found the Wandering Womb Society online chapter: women who help each other heal. And I discovered the difference between healing and curing. How I healed is mostly technical and not what I want to share here. Everyone heals differently and for me it involved genetics, herbs, vitamins, supplements, qi gong, shamanic and other woo woo practices, and quitting almost all the Rx drugs that cost me many thousand dollars a year (and that was with Medicare Part D paying most of it). I gained weight, lost my allergy to Benadryl, restored my cognitive ability, and became capable of living independently.
Most parts of my healing were brought to me by other members of the WWS. It was difficult and took dedication and stamina. In Part 2, If I Only Knew Then What I Know Now, being published by KosAbility Sunday 6 September, I discuss specific websites, forums, support groups, and other resources that helped me advocate for suitable medical care and taught me how to heal. Now, I want to share some of the comments from women in my WWS chapter house. I met J and a dozen other women online in a large poorly managed CFS/ME forum that wasn’t supportive. We left and formed our own small private group.
All of the women in this group have been important to me over the last several years. I have received medical, emotional, and informational support many times over. Sometimes just knowing you are available makes a big difference.
Another friend from this group wrote —
One of the first things I did this morning was to open my iPad and read your messages. I cannot tell you what they meant to me. Each one of you helped me feel cared for and understood. I do have a date for the surgery. I am sure I will go through with it, but I am also sure I will freak out again. I am trying to accept my feelings and not push them down. So I am remembering to take some time each day to sit quietly with my thoughts. I feel blessed (not a word I use much) to have such kind women in my life.
Often, we with invisible disabilities (mine are now invisible since I’m no longer a balloon on a stick person) are trivialized and told we should — get more exercise —try yoga —change our diet — think happier thoughts — try x, my brother’s mother-in-law was cured by x. My eloquent friend K wrote about this.
When I mention in a note to some people that I was able to take a walk, they turn on their cheerleader response, as if they think I would be able to do it more often if they encouraged me and I employed positive thinking. It's "try yoga" without those exact words. It's their belief that there's a simple solution if I'd only embrace it. Then, when I mention to those same people that I am having a rough day, there is no response at all, as if by ignoring my difficulties they can make them go away — or perhaps discourage me from indulging in having bad days? Not exactly that I'm faking it, but that it isn't real. Anyway, it's no wonder that my communications become more and more rare, and less and less personal and informative. Hence, I'm ghetto-ized, able to live as myself only among others of my kind: able to talk about my life only with those who are also invisibly disabled.
Like many friends in the WWS, I’ve emerged from a sick life. I'm not cured, not restored to the life I had before Lyme or the person I was. Long hikes, chopping firewood, going where I want when I want to do activities that elicit comments like “You’re so brave” or “You are crazy” is my past. I’m not trying to claw my way back to that person and that life. I’ve learned more than I knew there was to learn, having always taken robust health for granted, assuming that modern medicine fixed nearly everything, and that I could think my way out of any bad situation.
I needed the world of women connected online (and my daughter and local friends). And now, many of those women are my close friends; we meet in real life. Some are cured, others are healed, a few still are desperately sick. I won’t say I’m grateful to Lyme because I knew strong, remarkable women before illness, too. Healing is a full time job, a big commitment. I’d rather have met the WWS women on a tropical beach, at a concert, or in some strange out of the way locale where we were the only English-speakers. But the love and support we in the Wandering Womb Society share makes this ghetto a haven. Being invisibly ill, disbelieved, with health issues belittled by the AMA, has brought a gift I didn’t know was missing from my life: accepting (deeply, actively) that I am vulnerable, and feeling (mostly) okay about it.
SpiritSisters
≈ Beautiful graphic used with permission of artist Michelle Robinson.
SpiritSisters: Writing In Women's Voices is a group of women from all walks of life who have come together to tell our stories and discuss women's issues and rights. We come from every ethnic group, from multiple sexual orientations and gender identities, from a broad spectrum of ability status, from a wide array of socioeconomic classes, and from a diversity of traditions and cultures – spiritual, religious, and secular. Dominant culture narratives do not represent our lives; they elide, alter, and erase. We are sisters in spirit, and we are taking back our narratives. We are joining together in a circle of mutual trust and support to share our stories, our histories, our identities, our very selves, as individual women and as members of all of the diverse communities and intersections where we live — and doing so in our own voices. We discuss the harms women experience when the dominant culture does not accurately consider, believe or hear women's voices. We will also celebrate and share the strengths of our sisters in struggle, and the stories of women who are making a difference. SpiritSisters will be posting Thursday 4:30 pm (Pacific)/7:30 pm (Eastern) each week, and additional postings when members have time available. We are sending email notices (BCC to ensure privacy of email addresses) when diaries are posted. If you would like to join our email list, please kosmail rb137. If you are interested in hearing our voices and reading our stories, we ask that you click "Follow."
SpiritSisters: Andrea Spande, Denise Oliver Velez, Diogenes2008, JoanMar, kishik, mixedbag, moviemeister76, nomandates, Onomastic, Patriot Daily News Clearinghouse, peregrine kate, poco, ramara, rb137, shanikka, TexMex, TrueBlueMajority, Vita Brevis, Besame, and Yasuragi.