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When We Get the Big News: diagnosis delivery

October 7, 2013

Learning of a major diagnosis is a pivotal moment in a person’s life. On TV shows (and often in real life), cancer is diagnosed in a private physician office full of natural light, tastefully minimalist art, and plants. In a similar vein, most ICU, trauma, and Emerg units have private “meeting rooms,” where families and patients can be delivered sensitive news discretely.

By contrast, I was diagnosed with diabetes in a 30-second phone call. And then again by a triage nurse. And then by an ER physician (who assured me I had type 2).

It looked something like this (told in the 3rd person for dramatic effect):

April-May 2010: Sarah walks around for four weeks with blurry vision, acute thirst, extreme dizziness, disastrous fatigue and noticeable weight loss despite a frantic diet of ice cream, rice crispy treats, and fresh-squeezed carrot/orange juice.

May 13, 2010: Sarah finally goes to see her family doctor, after several weeks of telling herself it was all just a “somatic response to being happy.” Finally prepared to hear the worst – “it looks like you might have MS or a brain tumour” – Sarah’s family doctor utters the most-unsexy of disease names: diabetes. (WTF? Says Sarah to herself, in between gasping for breath and reaching for a water bottle to quench the unending thirst.) Doctor draws blood (no over-the-counter test strips available at this clinic), sends it off by express-courier for a BG test (200 dollars for the courier…a foreshadow of expenses to come). Sarah stumbles home, calls her boyfriend to tell him she might be diabetic.

May 14, 2010, 7:30am: Sarah wakes up to a phone call from the doctor’s office. “You have diabetes,” the receptionist urgently tells her. “Don’t do anything, just head straight to the ER. Tell them your blood sugar is 28.5.” Sarah does as she’s told. Calls a cab, and then her mum, asking if she can come along. While in the cab, she also calls work: “apparently I have diabetes, and I have to go to the ER. I’m not sure how long I’ll be there, but maybe don’t expect me at work for a little while. I’ll call you when they let me out.”

8am: Intake nurse finger-sticks Sarah’s finger for the first time (the Virgin Poke). BG is 16.4. “You have diabetes,” she informs Sarah. Okay.

8:30am: Sarah is now in an ER bed and hooked up to an IV drip. Friendly ER doc stops by: “you have diabetes.” Okay. “But luckily it looks like the kind you can treat with pills.” Sarah is momentarily relieved, because yesterday her thought process was: “it’s okay if I have diabetes, just so long as it’s not the kind where I have to give shots. Cuz I just can’t do that.”

10am: Sarah gets her first insulin shot. The nurse says, “don’t worry about having diabetes. You’ll get used to it.”

6pm: Sarah asks the new nurse on-shift whether she has type 1 or type 2. Nurse says, “hmm, probably type 1.” This becomes the new question Sarah asks every practitioner who treats her. The votes for type 1 start to chalk up. Type 2 is losing the race.

May 15, 2010 Midnight: Sarah wakes up in the night by another ER nurse, coming to draw blood for the thousandth time. Sarah tries falling back asleep. Fails. Starts instinctively to sing quietly to herself, upon which she feels the tears well up. “Can’t cry here,” an intuitive voice warns her, “it’s not safe.” Sarah finally falls asleep, quietly acknowledging the emotional magnitude of the past 36 hrs, and the sheer lack of any resources to help her process it here in the ER.

I wish I had a more elegant moment of diagnosis. I wish it wasn’t such a frantic whirlwind. I wish someone, sometime had stopped and asked me how I felt. I wish I’d been taken aside somewhere, explained what was happening to me and what the longer term implications would be. I wish the ER social worker had stopped by my bed to pay me a visit. I wish that hospital staff had agreed on a unified, consistent message to send me about my health.

That didn’t happen. I stayed numb for awhile. In the days following, the boyfriend found ways to coax some tears out of me, and I cried once to my mom the day I moved back into my apartment. Other than that, it was jab jab jab, test test test, learn learn learn, cope cope cope.

The real tears came later.

I have found ways to reclaim the dignity missing from that week. It hasn’t been easy, and the process has been messy. Maybe that’s the way it needs to be. At least I understand now how profoundly my life was changed by those series of half-informed conversations. If only ER health care providers had the time, training, and mandate, to truly understand that impact too.

Diabetic Love

October 4, 2013

Today someone at work told me, after I told her I was diabetic, that I should “marry someone else with diabetes, so we understand each other, and then adopt babies.”

That’s not what this post is going to be about, but I thought that was a good way to start.

I’ve been thinking about the invisible toll of diabetes, the psychological stress that I’m so used to I can’t even notice.  Being caught in a never-ending cycle of accomplishment-guilt-frustration-pride-more guilt-decision making-complex math-failure-hypoglycemic haze-ketonic haze (and did I mention guilt?) is like breaking up with your partner and getting back together every hour of the day. Or at the very least, it’s like being wired into the internet 24/7 without that sudden breath of fresh air when you get away to the cottage, out of cell range and off-line…just for a weekend, but still…

I also have been thinking about how tired I am of being the freak in the room with diabetes. I want my friends, colleagues, and family to understand.

Then I had an idea.

I wondered what would happen if I sent an email out to a bunch of people in my life, proposing this: everyone goes out and spends 50 bucks on a box of Freestyle test strips and a meter (the meter comes free with strips). Then, for five measly days, everyone commits to testing their BG ten times a day.

No hassle with having to give mock-shots or make pseudo insulin-to-carb calculations. Just test the damn blood ten times a day. See what it’s like.

Would people do it? I thought to myself. Would people actually get over the fear of blood-letting, would people be willing to part with fifty bux (a fraction of what it costs us PWD a month to Not Die), would people actually care enough to try out this little piece of what life is like for someone they care about?

Then I asked myself: would I be willing to set an alarm that would wake me up every 90 minutes all night long, simulating what life is like for my friends with nursing infants? Would I shave my head bald, in solidarity for the clients I would with undergoing cancer treatments? Would I drastically modify my diet for a week, to understand what life is like for my friend with severe Crohns?

Maybe, but realistically not. At least not without a clear sense of why it made sense to support that person in that particular way. Which doesn’t make me a bad friend – I just think that I show my friendship through actions and words in other ways, perhaps more meaningful ways.

So I’ll stop expecting the people in my life to Drop Everything and Experience Diabetes. And I’ll just keep letting them love me in the invaluable ways they do.

 

When Other Diabetics Talk Down to Me

September 30, 2013

I would be lost without the supportive communities and friendships of other PWDs. It’s the peer support and information exchange that keeps many of us from burning out entirely.

That said, sometimes interactions with Type 1s leave me feeling alienated or condescended to.

As a relatively “young” diabetic (diagnosis 3 and a half years ago), it is not uncommon for “older” diabetics to speak to me with an authority that ends up pissing me off. It’s a subtle thing, but I pick up on it.

For example, I recently met a lady who is celebrating her 40th year with type 1 (amazing!). I introduced myself as a type 1 as well, diagnosed at age 26. “Aw, you’re a baby,” she said sweetly.

I’d been called a “baby” enough times to have reflected on the not-coolness of that comment. In a friendly way (cuz the last thing I wanna do is start fights with my fellow T1Ds!) I said, “that’s not cool, I’m not a baby. I’ve had three hard years of 24/hr a day work, and I live this all the time. I’m as diabetic as you are.”

It’s true, I don’t know what it’s like to live decades-long with the disease. I have no first-hand stories of principal-office visits for insulin shots or awkward adolescent diabetic rebellion. I can’t speak about the NPH and R days with any personal authority. But I do have diabetes, and it has consumed more of my life than I’m happy with.

And believe it or not, I know my diabetes better than you know my diabetes.

There’s a subtle difference between offering advice in a collegial way, and in a way that implies that I know less than you do. I’m THRILLED when more experienced diabetics have showed me the ropes. My knowledge of how to fiddle with temp basals and square wave boluses, and simply how to navigate the emotional swampland of burnout, comes almost entirely from other PWDs.  When people offer advice because they know it’s helpful, and they understand where I’m coming from, it’s awesome.

I shut down though when I sense that a diabetic is giving me advice because they think they know best. I once found myself feeling pressured by another PWD to try the sensor. “I’ve already tried the sensor, I just don’t like it,” I had replied. I explained how I just found it information-overload, that it contributed to my sense of technological burnout, that my insurance didn’t cover it, that I regularly got allergic reactions to the adhesive, and that the sensors would often fall out after a day or two. He continued to tell me how great it was, even suggest that I ask my parents to buy me a set of sensors for the year as a present (if my parents are to offer me a several-thousand-dollar gift, I’d rather it go to something I actually want). I didn’t hear him hearing me. I heard that it worked for him, and therefore, in his mind, it ought to work for me.

In another recent conversation with a PWD, I mentioned that I was on a pump-holiday. “I’m really enjoying the pens right now,” I was saying. (And it’s true: it’s been over two months off the pump and I’m really happy about it.) I really wanted to talk about how amazing it felt to be off the pump right now, with someone that can actually understand first-hand what life is like daily on the pump. What I heard instead was a statement about how shots just aren’t effective. She went on to talk about how impossible she finds the pens, how easier life is on the pump. I had wanted to hear: “cool, I’m glad the pens are working for you right now. I’m really happy on the pump.”

I understand why we diabetics can be stubborn, and why we can speak with authority with each other about “what works,” rather than “what works for me.” When we find something that works for us, it’s easy to cling to it emotionally. Diabetes management is so deeply personal that maybe we need to guard it jealously.

Us PWDs need each other. Like any essential relationship, there is always work we can do to improve how we care for one another. And I realize that I am sensitive, maybe reading too much into some of the subtext from these conversations. But my diabetes is mine, and I know it best. It has caused me too much grief, anger, frustration, loss, and growth, for me to let anyone else claim to know it better than me. So I am sensitive. And it is personal.

 

 

A Note on 30

September 20, 2013

A blog about diabetes is also a blog about life, as diabetes, for me, is really a call to living well. And I don’t mean it’s a call to reduce cholesterol and increase omega 3s, which it can be to some people (I ate that shit well before the diabomb). I mean that it provides me with a daily meditation on life choices and their repercussions; a daily meditation on the permanent imminence of death and my gratitude for life; and a daily meditation on the inevitability of suffering and the opportunity to find meaning in struggle. 

 So I’m gonna blog a little bit about life today, as today is the mark of my 30th revolution around the sun, the end of a stupendously epic decade, and the beginning of a new one.

My twenties were epic. I repeat, my twenties were E-P-I-C. If the 20s are, to my generation, a time of self-discovery, mistake-making and value-shaping, I hit the mark on all fronts.

 

There was a lot of energy spent separating the person I wanted to be for others from the person I knew in my heart that I am. There was a lot of crashing-and-burning in love (and a lot of loving, growing, nurturing, falling and evolving in love). There were many many random jobs, as well as some amazing ones (I never expected to pay my rent as a radio host, or develop a little niche for NFP communications consulting, or work as a drama teacher, or be a counter-girl at one of North America’s most famed kosher bakery).

There were a LOT of trips to California, my self-proclaimed Power Spot. There were several last-minute impulsive moves to new cities, often when I was between jobs and seeking the high of a new beginning, or the escape of a broken heart, or the comfort of old friends, which like all impulsive decisions, had consequences that I had to face and grow from.

There was the way music (choral singing, singing-singing, songwriting) whacked me over the head after having cut it out in my later teens, re-entering my life in painful and beautiful ways. There were things that took a lot of courage: like going back to school to study music alongside a bunch of 17-year-olds, while all my friends were going through law school, grad school, or med school.

There were many, many expensive hours spent in therapy.

There were the things that strengthened my values and grounded me as a person. Being diagnosed with diabetes at age 26 changed me in countless ways. Helping me re-prioritize friendships, relationships, and values were just some of those ways. It gave me the kind of adult responsibility most people describe that they get from becoming parents – a total re-organization of how you view the world and your role in it.

Many platitudes have become lived truths. Over the last few years I’ve noticed myself seeking approval less, and being more forgiving of myself for being human. I’ve noticed that hard times can come and go and I don’t feel bad about them the same way: that I can be sad or lonely or scared for a time without being a Sad, Lonely, Scared Person. This distinction is huge.

My work ethic has improved. I like to follow through on the things that I say I will do. Being trustworthy and dependable matters to me. I work hard to cultivate and earn the quality of loyalty.

My capacity for love has gotten stronger. It’s a lot easier to love someone else with full acceptance of their humanity when you are loving and accepting towards yourself. Platitude of the Year, but oh-so-true. Similarly, I’ve become much more discerning about who I say I Love You to. With friends and partners alike, it’s something I don’t want to say unless my actions will back it up. For the long haul. Cuz that’s what love is.

So here I am at 30 today. Life is good. Yesterday I submitted bound copies of my master’s thesis, finally completing my master’s in music therapy. This degree was a long time coming: after wrestling with the very notion of grad school in my earlier twenties, I don’t think I could have ended up in a graduate program more suited to my skills and talents than this one. I’m proud to say I didn’t do this degree to please anyone else – I did it for my own growth, and so that I could offer greater skills and services to the world.

And its getting me work! I am gainfully employed in work that challenges me and rewards me, that is diverse enough to satisfy my interests and personality. I get to work from home some days, on the road other days, in hospitals, nursing homes and counselling centres, some days with people and some days with myself. I get to keep singing professionally in choirs. I can look forward to being above the poverty line in upcoming fiscal years, and to build a wee bit of savings. After a decade of struggling to negotiate a desire for a career with a commitment to personal growth and authenticity, this feels huge.

Life, and nature, have inevitable seasons of growth and seasons of dissolution. While both have meaning, growth and bounty is always a little more comfortable to sit mindfully in. I’m glad to be in such a season right now. It definitely makes a birthday easier to celebrate.

I feel 30 now, which is great. 🙂

Helping Clinicians Understand Patient Needs: a research study

August 28, 2013

Some PhD over at Université de Laval is doing a study on the use of social media to help diabetes-related clinicians understand patients’ needs. I’m all about that stuff. To participate, PWDs are invited to create some piece of social media expressing what they wish health care professionals knew.

Naturally I could say a lot about this, but I decided to narrow it down to three little things. Here they are.

Three Things I Wish HCPs Knew

1) This could be you.
Simple thing, but I just want everyone to realize that, not just medical professionals. We all have the capacity for illness. I was a person without diabetes before I became a person with diabetes. Just something I wish people would deeply empathize about. Especially those who provide treatment.

2) There are other things going on in my life besides diabetes.
Diabetes is one of my many responsibilities. There are months where I’ve prioritized my diabetes above all else – that means I adjust my work schedule so that I get my morning workout, I cut out stressful situations in order to reduce spikes, I attend to my diet with saintly precision. Sometimes I have to prioritize other things. If my A1Cs have crept up, it could be because, this month, work had to come first. Or I’ve been travelling a lot, seeing family and attending conferences. Or I’ve been going through a difficult time emotionally and food choices and stress levels have been affected. Diabetes can’t always come first, all the time.
Last time I was at the endo, I was congratulated on having an A1C of 7.2. I told him that I was honestly a bit disappointed – that it was like getting an 89.4 on an exam, missing the “A+ zone” by a frustratingly slim margin. He responded by saying that there are few exams in our lives that we have to take every three months for the rest of our lives, so to cut myself some slack if I can’t ace the test every single time. He’s right: there will be high seasons and low seasons in diabetes management, as there are in all of the natural world. I wish other HCPs had this attitude about non-optimal blood sugars. This endo gets it cuz he’s Type 1 himself.

 3) It’s not weird that I know my diagnosis date. 
This is a small thing, but it irks me. It happens a lot: a random medical professional is surveying me on various things diabetes- and non-diabetes-related. They ask when I was diagnosed with diabetes, so I tell them May 13-14 2010. Then they chuckle or comment, “wow, you know the actual DATE?”

Well-intentioned though it may be, this surprised reaction has felt shaming, in mild but very tangible ways.  Diabetes is a big deal okay? A life-changer. People rarely forget their wedding anniversary, or the birth dates of their children. Its the other diabetics and caregivers/supporters who know, like the back of their hands, the significance of a diaversary. I wish medical professionals weren’t so surprised that I know my diagnosis date by memory. Truth is, not a day goes by when I don’t remember it. Maybe if I had more spaces to talk about how painful it was, I wouldn’t feel so protective of it.

It always feels important, whenever I provide critical opinions on diabetes HCPs, to express what quality care I have received from the two endo clinics I have attended, as well as other HCPs met along the way (at DYF, CIM…). Experiences of caring, empathetic, encouraging, and informed clinicians far outweigh those of misinformed, insensitive, douchey ones. A few of my attending HCPs subscribe to this blog, which speaks volumes about their commitment to understanding patient experiences. Y’all are heros. Thanks for standing by me during the difficult times, and celebrating with me during the small triumphs.

Making a career of the betes (or, a meditation on platitudes)

August 21, 2013

Many platitudes come to life when diagnosed with an illness. “When life throws you lemons, make lemonade” is one, or as Kelly Clarkson evangelized in her hit song, “what doesn’t kill you makes you stronger.”

For 3 years, I’ve been walking a fine line between letting diabetes enrich my life and letting it define me.

Or to work with the metaphor here, I’ve been walking a fine line between making lemonade for the occasional Saturday morning lemonade stand to make some extra change, and quitting my day-job to buy out a giant corporate bottled-lemonade processing plant.

(Somewhere along that fine line is the third option – the one where I say “this shit sucks and I hate it, it’s so unfair, I give up on life.” I haven’t yet found a home within the metaphor – or in my life – for that scary feeling to be expressed safely.)

During my three years with diabetes, I have cycled in and out of involvement with advocacy/support/fundraising groups for other Type 1s. Having taken a “break” from that scene a bit this past year, I now find myself wanting to cycle back in to being involved.

I worry though that by becoming too involved in diabetes advocacy stuff, I am giving diabetes too big of a voice in my life. How do I let diabetes give me opportunities to kick some ass without giving it too much podium time in the Grammy Acceptance Speech of Me?

Diabetes helps me be a better therapist. Diabetes has given me many perspectives on social justice issues. Diabetes has given me a lot to write about, and gave me an excuse to start running longer distances. It’s introduced me to some magical people. Good stuff, no? I ride the pendulum: on the one hand I want to maximize my experience, knowledge, perspective, and capacity for empathy that diabetes gives me and apply it to my work, hobbies, and friendships. On the other, I want to say say “enough already. Diabetes has taken up more than its share of airtime. Back to the stuff I used to like before this shit happened.”

….

One of my first experiences of Well-Intentioned-Insensitive-Things-to-Say-to-a-Diabetic (WIITSB) was from, of all people, my partner at the time of my diagnosis. Two weeks into my life with diabetes, he said to me one day, “you know, you’re not Sarah-the-Diabetic, you’re still Sarah.”

I was not wanting, or ready, to hear that. It was said with love; also probably said with a bit of fear, and for that I feel a lot of compassion (lord knows the lack of emotional support for caregivers is arguably even more tragic than the lack of it for patients…at least we patients get a doctor’s note for time off work). As scary as it was for me to be taking on diabetes full-swing, it was probably scarier for those who love me, to see Old-Sarah disappear.  I’ve grieved the shift in friendships when dear people in my life become parents, changing the relationship forever. I’m not a parent, but I think it’s reasonable to compare being diagnosed with a chronic and time-consuming illness with becoming a parent.

So my reaction when my ex-partner told me this was: Correction, I am Sarah-the-Diabetic. And being “diabetic” was in fact one of the most certain, non-negotiable identities I’d ever inherited. As a person with a classic artistic temperament, I’ve spent much of my adolescent and adult life “searching” for meaning, reinventing myself, overly-questioning choices I make, and digging unhelpfully deep for that golden compass, that thing that might point me home, the answer to that question “who am I?” I have pursued self-exploration to a fault. Diabetes, however, was simply a fact. My pancreas was down. No insulin. Simple, organic matter dictating a simple, non-negotiable identity.

Two years later, when I was working with a counsellor who specializes in clients with disabilities, she was helping me come to terms with my unaddressed grief and trauma surrounding my diagnosis. One day, after listening to me talk for awhile, she made a gentle suggestion. “What if, instead of calling yourself a ‘diabetic,’ you tried calling yourself a ‘person who has diabetes?'” I froze. “I don’t think I’m ready for that,” I said quietly, defensively. The counsellor laughed warmly: “I can see that.”

It must have been written all over my face.

….

So there is that fine line between clinging too hard to being “Sarah the Diabetic” and being “Still Sarah.”  As I explained it to someone recently, I feel like for the first 18 months post-diagnosis, diabetes was the most interesting thing about me. I’d find a way to mention it within three minutes of meeting someone new. I hit a period last winter of anger about that. I wanted Old Sarah back, didn’t want to talk about the diabetes or get involved or anything. So I just quietly carried on with the blood letting and ‘slin pumping (quietly being the operative word: I would actually leave class to go test, despite every one of my colleagues knowing about and supporting my diabetes. I was simply tired of drawing attention to it.).

Now the challenge is to give it a healthier place within my palate of identities. And part of that means that it will influence my personal and professional interests.

….

I think of my friends who, by having children, have opened themselves to completely new ideas about their career goals. There was the old classmate who changed careers to open a baby-boutique because she realized, from her own experience, that there was a need for it in her baby-ridden neighbourhood. A dear friend who experienced a lot of post-pardum challenges now is considering switching careers to become a post-pardum doula. Another gal pal, now on her second mat leave, is considering leaving her academic position to pursue midwifery. Through becoming parents, these women have been exposed to new possibilities that they never would have predicted. Life events change people. It’s natural.

Letting diabetes influence my hobbies and career interests seems similarly natural. It is a part of who I am, so I will discover new things I never new about before. The difference is that diabetes is a Bad Thing. While, according to cultural standards, parenthood is something to be embraced, illness is something to be ashamed of. Diabetes has invaded enough aspects of my life, so why give it more room? Ah, the eternal dilemma.

All in all, I’m happy to see my interest in diabetes advocacy reigniting. I like that, as a therapist working on multidisciplinary health care teams, I have a strategic advantage as someone also living with an illness. I like that, since the first month of my graduate degree, I’ve been told by many professors and supervisors how much my diabetes will serve me as a therapist. I like that I get to have cool conversations with cool people organizing cool diabetes conferences and support groups and think tanks and programming. It’s a world I never thought I’d be a part of, but it sure is full of rich and interesting stuff.

All in all, I guess I like lemonade. I will try my best to continue to make lemonade with the Lemon of a Self-Destructed Pancreas, but also make room on the table for other beverages (like…diet root beer…good GOD diet root beer). And try to remember that while lemonade might be delicious, there are many other fruits in the fruit bowl of life on which to feast. And some of them don’t even need to be doctored into sweetened beverage form. They’re just awesome on their own.

Physician, Heal Thyself: on being a patient-health-care-professional hybrid

August 5, 2013

Many people have told me that my diabetes will make me a better therapist. I have no doubt.

My double-identity as a health care professional and patient is, apparently, really valuable. (There’s even a term for people like me: “hybrid.” I like this term. Makes me feel trendy and innovative, like a Prius.) Hybrid perspectives are in high demand. A recent conversation with a fellow TID and psychologist got me interested in the need for people like me – people who can provide counselling to patients and training to professionals about what patients need: compassion, respect, dignity, to name a few things. (Every person is different. Not everyone’s needs are the same.)

Then last week, another conversation reiterated that these hybrid perspectives are much needed.  It was over a conversation on my parents’ deck in Montreal, with an old family friend – a paediatric nurse – about patient-centered care.  She is involved in the McGill Faculty of Medicine”s wonderful “Whole Person Care” program and is very passionate about training medical professionals in these reflective practice tools. She was interested in how my perspective as a patient can help better inform health care practitioners in delivering better-quality care. The conversation was both personally gratifying for me (“someone’s hearing me!”), and professionally very exciting (“I need to publish on this!!”).

Having just finished my master’s in music therapy, and having just begun working in the field, I have had plenty of opportunities to reflect on theories of patient-centered practice and how they relate to my diabetic-self. My diagnosis was only a year before I started my master’s, and I’ve been processing a lot of the ongoing grief in tandem with this degree. It was, in fact, an experience my first night in the hospital, when I was diagnosed, that confirmed my then-loose ideas of having a music therapy career. It was an experience that left me with the very clear thought: holy cow, hospitals need more music, so that people can safely fall apart from grief.

I have brought a lot of patient-perspective to my master’s degree. I even wrote my thesis on how music therapy contributes to a growing culture of holistic practices in medicine, and how equally challenging it can be to fully embrace that holism within a traditional medical institution. I cannot separate my work with clients in hospitals and health care settings from my own processes as a patient – processes of grieving and healing, fighting and denying,  repressing and investigating, celebrating and forgiving.

And yet, I find myself falling into uncomfortable habits as a health care professional. Currently I am working three days a week in Long Term Care facilities. Most of my clients have dementia, are non-ambulatory, or (in most cases) both. Being surrounded all day by people who are elderly, disoriented, and dependent on others for feeding, dressing, and toileting, affects a person. These are some of our cultures most vulnerable and neglected peoples. I wish it wasn’t so easy to fall into habits of finding residents “cute,” or “endearing” in their dementia-related helplessness. It can be the hardest thing in life, and certainly in health care, to remember that we are all people.

And boy have I felt it on the other end, as a patient – although my catalogue of Totally Inappropriate Things Health Care Professionals Have Said To Me is meagre compared to my fellow diabetics who’ve been at it a lot longer. I became a patient at an age where I knew my rights and wasn’t afraid to insist on them. But I’ve had a few completely non-patient-centered experiences:

There was that drop-in clinic GP who filled out my driver’s license health form, and asked me “have I ever experienced hypoglycemia?” (Which is like asking me if I’ve ever sneezed.) She was so shocked that I had experienced occasional lower-than-optimal freak BGs in my life that she almost cost me my driver’s license.

There’s my current pharmacist who has repeatedly used totally inappropriate language with me when I come in to refill my test strip order a few days “early” (ie. before the insurance company deems it appropriate for me to require more strips). He’s said things like, “you’re using too much,” or “it’s too soon,” or “I just gave you some.” English is not his first language, but there’s an attitude there that suggests protecting himself from insurance-company audits is more important than understanding and responding to the health needs of his clients. I’d get the hell out of there if the pharmacy wasn’t conveniently located a block from home. And boy has he heard a piece of my mind.

One of my faves: a physician at my school’s drop-in clinic instructed a nurse to call me to inform me (verbatim), over the phone, that I have “uncontrolled diabetes, and should make an appointment with my endocrinologist immediately.” (All this based on an A1C of 7.6.) To which I replied, “no, he’s wrong. I don’t have uncontrolled diabetes. I have diabetes, which means that sometimes my blood sugar is high” and then made an appointment to speak to the physician in person to explain how completely disrespectful and misinformed that choice of language was.

Being a patient in a modern medical system can be dehumanizing. I believe that modern medicine, by its very nature, is systematically dehumanizing, to an extent. As a reductionist practice that focuses on illness, there are not yet structures in place to focus on wellness. In treating disease areas and isolating pathologies, we lose out on the idea of our wholeness and shared humanness. That’s a big reason why there’s such a push in medicine towards holistic practices, and why I’m so excited to be in the career that I am now.

I’m learning how to feel whole in spite of, and also because of, my body’s inadequacies. It is also easy to fall into sadness, fear, and stigma around illness. Contributing to the dialogue between HCPs and patients excites me. It’s really cool to hear that being a “hybrid” is valuable – and not just because it means my perspectives are in demand. Because the lives of patients are increasingly being seen as important as the threats to  them.