Trolling for a Cause

Okay, full disclosure: in my day, ‘trolling’ was either dropping a baited fishing line in the water behind the boat as you cruised, or watching out for Billy Goat Gruff villains under the next bridge. I didn’t realize just how much I was in need of a more recent update. I mean why does everything now seem to have an online reference? A diktat. That which was once perfectly happy as a denotative word, complete with papers as an official definition, has since wandered onto the wild side beyond the tracks and reinvented itself as a ‘connote’ –or whatever the noun for its once respectable verb might be. I suppose I could look upon their ilk as metaphors, but I suspect they are a little too slippery to be confined like that.

Maybe what has drawn my interest this time is an article I saw a while back on my BBC news phone app: http://www.bbc.com/news/world-asia-38267176 That I am being critical of matters to which I may, online at least, be naively party, has not escaped my notice. Irony, if not denotatives, can sometimes coexist, I suppose.

At any rate, it’s the issue of media advice I wish to address here. And the issue, I must confess, is problematic to say the least. In brief, a young London woman, Dami Olonisakin, began to write a sex and relationship blog, Simply Oloni, in 2008 because she felt that a lot of women didn’t have anyone to speak to. ‘It began as a personal lifestyle blog and she wanted to be the person that someone could speak to without being – or feeling – judged.’ Fair enough. She wanted ‘to give out impartial advice – something she believes can be more valuable than the opinion of a friend or a relative, who could be too emotionally involved.’ The identities of the participants and their problems were kept confidential and indeed she did not set herself up as an expert, merely an intermediary, as it were. She posted the problems on her Twitter account for her ‘26,000 followers to also share their advice and tips on the dilemma.”

It became quickly apparent, as she herself admits, that not every reader was happy with reporting the sorts of problems she receives. ‘”Not everyone has accepted that women are allowed to talk about sex freely, and we are allowed to embrace our sexuality; whether it’s choosing to keep your virginity until you’re married, or wanting to have casual sex, or wanting to be friends with benefits,” she says. “Your sex life is not a decision for other people to dictate.”’ And the critics were apparently not kind in their responses -they ‘trolled her’, to lapse into the vernacular for a moment: ‘”I’ve had trolls online telling me I’m ‘disgusting’ for suggesting that girls dating more than one man [at a time] is fine,” she says.’

A lot of things can be said under the cloak of online anonymity, to be sure and I suppose venting it serves some purpose or other… but as the inadvertent recipient of ‘trolling’ for writing a supportive comment on a news item a friend had posted online, I can attest to the concern –and even fright- that the vitriolic response elicited. It was almost as if someone had entered my house while I slept and spray-painted a hateful epithet on the bedroom wall. Perhaps I deserved it for daring to evince support for something in public -sorry, online; nobody agrees with everything, after all, but it was the emotions, the hatred, oozing from the words that felt threatening. And yet, maybe that’s just my age talking -presumably most youth today have evolved an internet shell under which they can shelter. But as the devastating effects of internet bullying have demonstrated, the shell is far from impervious. Far from universally distributed.

As bad as ‘trolling’ and internet bullying may be, however, I am more drawn to the courage of Oloni in recognizing the need that women –all of us, really- have a desperate wish to be heard. And to be heard impartially, non-judgmentally. Friends, clergy, and even doctors have the unfortunate habit of diagnosing and then advising; sometimes the person doesn’t want a diagnosis, let alone a treatment –she just wants someone to listen. Often the simple act of describing something to a dispassionate ear, is in itself a cure –or at least a relief. We don’t always require advice either –sometimes just a respectful silence. An acknowledgment.

This is often readily apparent in the privacy of my consulting room. I am a gynaecologist by trade, but occasionally ‘sounding board’ would describe it better. Deborah, a normal-appearing 38 year old Caucasian woman, was a good example.

She had been sent to me by a worried family doctor because of her heavy periods. Nothing the GP tried seemed to be working, so in desperation she had sent her reluctant patient to me to see what I could do for her. All of her tests were normal –iron stores, haemoglobin level, ultrasound of the uterine lining, and even a biopsy of those same cells (just in case) as she put in brackets.

On taking her history, Deborah assured me that her periods were quite regular and predictable, and on the whole, not any different from what she had experienced for years.

“I shouldn’t have mentioned them to Dr. Cameron,” she said once I had finished the history. “My mother and her sister both have heavy periods, so neither of them seemed at all worried when I was a teenager. But my GP seemed adamant: they were too heavy. In fact, she put me on all sorts of pills to decrease the flow…”

“And did they work?” I’m not sure why I interrupted her at that point, except for her eyes. They kept wandering to the pictures on the wall, or out the window to the tree outside. It was almost as it they feared to seek shelter on my face.

She shook her head at first, and then grinned. “Well, actually I didn’t take them -they were samples anyway, so…” She thought about it mid-sentence, and then suddenly revised it. “Well, actually I did take one and it made me feel sick, so that was it for the pills, I figured.” She shook her head sadly and then sent her eyes to explore the wooden carving of a woman holding a baby I’d positioned on my desk behind a plant to make it look as if she were hiding. “I felt like that woman,” she said, pointing at the carving. “You know, like I needed to hide from all her well-meaning advice.”

She was silent for a moment, so I waited. “I think Dr. Cameron had a thing about periods, actually. Each time I’d return for follow-up, she would smile and shake her head in that conspiratorial way women have –you know: ‘what a life we have to live’, and all that. She tried several contraceptives that I never took. And then she suggested a progesterone IUD that I refused.” Deborah finally allowed her eyes safe passage to my cheeks. “I only let her do the biopsy because she felt so upset about her treatment failures. She needed to find something. An explanation. Or better still, a solution.

“But I started to get really worried when she began to hint that I might need surgery. ‘Maybe just an ablation to get rid of the lining cells of the uterus,’ she added –probably because my face went pale.”

Deborah sat back in her chair and scrutinized my face, obviously more relaxed than when she’d entered the office. “Dr. Cameron suggested I see a gynaecologist that she was going to recommend, but I didn’t recognize the woman’s name. And anyway, I wasn’t so sure I wanted to discuss it with another woman…” A mischievous grin surfaced on her lips. “I figured I needed a non-participant… Neutral territory,” she added, her eyes twinkling. “And anyway, my mother sees you and she’s still got her uterus at seventy-three, so…” She blinked; it was my turn, apparently.

I shrugged and tried to suppress chuckling at her posture. She was comfortably ensconced –slouched, actually- in the far-from-comfortable wooden captain’s chair across from my desk, looking like she didn’t have a care in the world. I couldn’t remember anybody owning the chair –owning the office– like she did at that moment. “Well, Deborah, I have to say that I’m not worried about you.”

“No ablation? No hysterectomy…?” She pretended to pout. “Nothing?”

I smiled. “Well, if the periods get worse, you could always come back…”

The mischievous look returned. “Don’t worry, my mother would make me.”

 

Digiphilia

My computer seems to be constantly doing things behind my back, or under my fingers. One minute it’s performing some sort of update, the next, applying a patch or pretending to, at any rate. I have to trust that whoever makes the little signs that pop up is honest and doing things in my best interests. But how would I know -until it’s too late? There’s a lot of hope that goes into owning a computer nowadays -but sometimes it seems more like a Mafial protection racket and I do what it says so I don’t get hurt. So my data doesn’t leak out onto Facebook. Doesn’t de-encrypt on its way to the Cloud.  Of course, that’s what I pay it to do, but nonetheless it always seems busy. Like me.

Sometimes I wonder what that means, though -being busy. Is it like my computer -being occupied with a thousand thankless tasks whose relevance is probable, but unprovable and invisible? Or is busy actually more like what it does for me when I ask it to print something, or search for a particular file and display it? Something I can use, in other words.

The questions are not as odd as they seem. A patient of mine seemed to be confronted with a similarly existential angst one day as she was fiddling with an app on her smartphone trying to find the date of her last period. I’d seen Jenny a few times in the past for heavy and irregular periods, but they’d sort themselves out and I wouldn’t hear from her until the next time her family doctor became concerned. A young-looking woman in her mid-forties, she always seemed busy with something in her purse or in the depths of one of the voluminous pockets of the coat she always chose to wear. Then, like a magician extracting a rabbit from one or the other, she’d hold up a scrap of paper like it was a Dead Sea Scroll and wave it at me in triumph. “I knew I’d written it down,” she would explain, her face red with the effort. “It’s the best way.”

It was different this time, however. I hadn’t seen her for a while and her hair was longer, greyer, and piled on top of her head like she’d done it in a hurry in the dark. Her face had changed as well -more lined. More flustered. She was wearing a dark blue woolen sweater with no pockets, and her purse wouldn’t have held much more than a phone. But as agitated as she looked, she greeted me with a warm smile of recognition.

My first question, after the usual reminiscing banter seemed the obvious one. “Your doctor says that your periods are heavy and irregular again,” I began, glancing at his letter on the screen of my laptop. “When did the last one start?” This initiated a confident dip into the little purse and a rather smug look on her face. She pulled out a standard issue smart phone and started to punch in the password to unlock the screen. I could tell from her expression that it hadn’t worked. “I decided on a simple one, so I’d remember the password,” she explained with a blush. “But I think I entered it backwards…” She smiled to herself and re-entered it with much the same result. “Damn! Maybe I’m using the one for my debit card -the PIN thing…” she added for clarification. “Or could it be the..?” She punched in a few more numbers, this time angrily, then sighed noisily. She blushed again, but her cheeks were already flushed with irritation. “New phone,” she added, but more to herself than me. “Actually, my first smart phone…”

She put it on the desk for a moment while she decided what to do.

“Just tell me the approximate date your last period started,” I said to calm her down a little. “It doesn’t have to be exact…”

But I could see an idea flash across her eyes. “I wrote it down just in case,” she said and stood up to reach into a pocket in her jeans. My fingers hovered over the keyboard in anticipation. “Here it is,” she said, pulling out a crumpled piece of brightly coloured paper the size of a small post-it reminder like I used to stick on my charts to alert my secretary to do some task or other. Jenny had her backup systems.

But it wasn’t the date of her period, it was the password for the phone.  I rolled my eyes when she wasn’t looking, and smiled patiently: my backup system…

Soon she was deep in the inner mysteries of her phone hunting for an app, scrolling randomly it seemed to my watchful gaze. I glanced at my watch -eighteen minutes so far of no progress in solving the problem she had waited so long to see me for.

“I used to just remember things like this,” she said with an embarrassed shrug. “Then, when my periods became irregular, I would write the dates down…”

I couldn’t see her face as she said this -her long, greying hair had come unravelled from its original wrappings and was hanging over her nose and eyes as she stared at the tiny screen, head bowed as if in prayer, frantically scrolling through some app or other with her fingernail.

“My girlfriend convinced me to get one of these,” she said, perhaps pointing at the phone that was hidden in her lap behind the desk. She looked up briefly and smiled at me. “You remember Lara?”

It was a statement really, not a question despite the obvious verbal question mark. I decided I did not have to respond and just smiled in return. I had no idea who Lara was.

“You delivered her little girl a few years ago,” she continued almost as an aside, trying to multitask as she whacked at the screen. “Anyway she said she’d given up pencils for good and was happy about it. No more scraps of paper in her pocket, or sounding the depths of her purse for a reminder she’d forgotten she’d put in there.” She surfaced again for air, and then just as unexpectedly disappeared behind her hair. “No more worrying about where things are; everything’s in the same place…” Her hair quivered for a moment, then the moment passed and the scratching sound resumed. “You can even set an alarm on some of the apps… Not this one, though,” she added, as if to excuse her absence.

“Anyway, Lara says to say hello.” And then a whispered curse, as if her friend had joined her behind the wall of hair.

“Any word about your period?” I  asked, pretending it was a joke.

Jenny giggled nervously and waggled her hair again. “I should have written that down somewhere for you… Well, I mean I did, but I can’t find it.” Two eyes peeked timidly through the hair like children hiding in a bush. Then suddenly, her head bobbed up and the hair parted as a curtain might with a gust of wind. “Wait a minute,” she said, excitedly, “I did write it down!”  She jumped to her feet and managed to cram some fingers in another pocket in her jeans. “Hah!” she shouted excitedly. “Here it is! You always have to have a backup plan, don’t you?” She pulled out another post-it note and placed it triumphantly on my desk.

I smoothed it out and tried to read the now-smudged writing on it as she watched my every move with ill-disguised pride. When I seemed to be having difficulty she gently retrieved the tiny document from my grasp and translated it. But slowly, like a teacher trying to help an unexpectedly slow pupil. “It says nine days ago, doctor. It started nine days ago -well, probably nine and a half, because they often seem to start the night before…”

I have to say she was very patient with me. More patient than I felt. “Nine days ago Jenny?”

“Nine and a half,” she corrected me.

“But couldn’t you just have told me that in the first place? I thought maybe it might have been a few weeks ago, or perhaps a very long time ago…”

She shrugged noncommittally. “That’s why I wrote it down,” she said as if I was still being a bit slow. “I didn’t want to give you the wrong information, after all…”

“But…”

She looked at me, obviously annoyed that I was not being more understanding. “I lead a busy life, doctor. I can’t be expected to remember everything.” She softened her expression like a mother, concerned she might have been a bit hard on her child. “So I write everything down where I can find it when I need it.”

I stared at her phone for a moment and shook my head with a knowing smile. I don’t think she saw that, though, because she was obviously  pleased with her methods and was carefully folding up the password on that first piece of paper and getting ready to put it back in her pocket again. “When you’re busy, you have to have a plan,” she said proudly. “And a backup…” she added wisely, in case I hadn’t seen the wisdom in it all.

Fibroids

I sometimes prefer to call them leiomyomas -it’s more descriptive of a condition that involves muscle cells- or even fibromas. I said this by way of beginning an explanation to a patient who was sent to me for them; she looked at me as if I had just sworn at her -belittled her condition. I hadn’t meant to…

“Hiding behind medical words, doc?” she said, unsuccessfully attempting a smile.

I suppose I was. Her mother had endured a hysterectomy for fibroids, her sister had developed them and was booked for surgery, and  a recent ultrasound had discovered  several 3-4 cm. nodules in her own uterus. Now I was trying to fool her with new words: a different type of fibroid that maybe you didn’t have to remove.  She’d looked them up, and talked with her family, and now was convinced that hers needed fixing too.

Not too long ago, that’s what you did with fibroids: you either removed the fibroids, or the organ that carried them. Period. They were clearly abnormal and shouldn’t be there in the first place. They pushed on things inside the abdomen, could grow really large -and, oh yes, they made you bleed. No, hemorrhage! End of story. And besides, for Marlene, it was a family tradition, a rite of passage into the next phase of womanhood: after the kids, the hysterectomy.

She seemed disappointed when I told her they were quite small, and that their location made it unlikely that they were contributing significantly to her heavy periods.

“Then why are my periods all over the map and heavy like this? When I was younger, they hardly showed.”

I tried to put fibroids into some perspective for her. “Well, first of all, fibroids are really very common. Up to 30% of caucasian women at thirty years of age have fibroids. That’s how I remember it,” I said, smiling, and dotted my pen on a diagram of a uterus I keep on my desk to illustrate the size they might be at that age. “And in some populations, genetics probably plays a big role and the figure might be as high as 50%.” She became all eyes.

“Fibroids are usually very sensitive to estrogen and so they tend to grow more rapidly in a woman’s mid to late forties when they get a lot of unopposed estrogen -estrogen that’s not being opposed by progesterone…” I could see I was losing her. “You’re what..?” I snuck a look at the chart. “Forty-eight?”

Her brow wrinkled. “Forty seven, doc.”

“Well, when you were twenty-seven, you probably ovulated each month and then your ovary would produce progesterone and…”

Her hands slipped onto the desk in front of her and she leaned over it and stared at me. “Doc, I’m not here to talk about what my ovary does or used to do. I’m here to talk about what my fibroids are doing now!”

She had a point.

“And more particularly, what you are going to do about my fibroids!”

“Well, I don’t think that…”

“My sister’s fibroids are small, too and she’s getting them out.” She sat back for a moment, convinced she’d scored a point. “She’s two years older than me and she’s got six.” Her face took on the determined look of someone  dealing with a small child. “How many have I got?”

I looked at the ultrasound report her family doctor had sent along with the consultation request. “It just says ‘multiple fibroids, the largest of which is three centimetres in diameter. They all appear to be intramural in position with no submucosal component.’  They usually only describe the biggest ones, because sometimes the others are too numerous to count.”

Her expression showed some interest. “Sub what?”

I showed her on the diagram that a submucosal fibroid juts into the lining cells of the uterine cavity. “They tend to be more of a cause for heavy periods than the ones that are growing in the middle of the muscle of the wall: that’s probably because they create an increased surface area where more endometrial cells can grow.” It seemed a good argument to me. “So your fibroids are small and not sticking into the uterine cavity.” I drew what I hoped was a convincing fibroid in the muscle wall, careful to keep it a decent distance from the lining cells in case she wanted to argue about surface areas.

“But I got a lot of ’em doc,” she said, almost proudly. “My sister only has six and she’s getting a hysterectomy.”

“Well,” I said, stalling for time -I could see the writing on the wall already. “There are other things we can do for fibroids…”

Her arms suddenly appeared across her chest as she pretended to listen politely. It was what you had to do at a doctor’s office sometimes. “Like what?” she said with her mouth, while her eyes dared me to find something acceptable to her and her family.

“Like embolization: cutting off the blood supply to the fibroids so they shrink down by about…”

But she was shaking her head vehemently. “Doesn’t sound natural!”

“Well, if we could get you to menopause without surgery that would be really natural -given that you have no symptoms except a recent onset of heavy periods, and there are…”

“No symptoms? What would you know about symptoms, doc?” she said, giving what she could see of me above the desk a critical once-over and rising to her feet. “I can see I’m wasting my time here,” she muttered, gathering up her belongings from where she had scattered them on the floor beside her chair. “I knew I shoulda gone to a woman!”

“Marlene,” I said to her back as I rose to see her to the door. “I was merely suggesting that there are options with fibroids; they don’t all have to end up being removed.”

She turned to face me, and I could see the muscles of her jaw twitching. I had obviously crossed some sort of threshold. “Doctor,” she said coldly, “Despite your age, you still haven’t learned when options are needed, and when they’re…” She paused to consider the word. “…Unnecessary and insulting. If I’d wanted a choice, I would have asked you!” And with that, she turned and walked out.

I’ve thought about this a lot and I’m still not certain whether she was right. For a choice to be truly that, shouldn’t it be made from a list of things that might also work -an informed choice, in other words? Wouldn’t it be irresponsible of me as a doctor merely to accede to the initial wishes without explaining what else is available?

It would be easier, I’ll admit, but I doubt if I could sleep at night…