what it feels like: 'why am i being punished' with type 2 diabetes?
7 minute read
now that she’s in a groove with the proper meds and lifestyle plan, amy moore says she’s more comfortable living with diabetes, but it does take work.
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when amy moore was diagnosed with type 2 diabetes seven years ago at the age of 25, she cried. not entirely because of the knowledge that she would now have to manage a lifelong medical condition that would require constant monitoring, but because she finally had an answer that explained her extreme fatigue, weight fluctuations, and hypertension.
the pathway to that diagnosis, however, was labyrinthine.
because she was so young, her doctor shrugged off her symptoms and told her to go to a zumba class. when she came down with tonsillitis, she consulted a different doctor and used the opportunity to relay her other symptoms of fatigue and weight issues. the doctor ran some blood tests and frowned over her glucose levels.
“he told me, ‘this isn’t how you should be feeling for your age and how your numbers should be either,’” says moore, who lives in regina. “i was so borderline and it didn’t make sense; he didn’t understand the weight fluctuations.”
so moore’s doctor ordered a few other tests, including one for polycystic ovary syndrome (pcos), a hormone imbalance that often causes small cysts on the ovaries, and which runs in moore’s family. women with the condition may gain weight and have fertility issues. left untreated, pcos can lead to heart disease and diabetes.
but the test came back negative.
the next plan of attack focused on diet. she had been carrying a bit of extra weight, even though she says she doesn’t eat a lot of sugary foods. she met with two different nutritionists, one who advised her to follow the canada food guide and the other who said her diet and portions were fine, she just needed to increase her fiber intake. moore thought she was already getting sufficient fiber.
“half of my dinner plate is fruit or veg, a quarter is carbs, and a quarter is protein,” says moore. “i’ve been doing that for a number of years now.”
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the endocrinologist in her area had a three-year wait list, so her doctor referred her to a kidney specialist called a nephrologist, who gave her the official diagnosis. she dove into further improving on her diet, became more active, and researched everything she could about diabetes and how to manage it.
but just as it took a few years to get that diagnosis, so too did it take time to get the medications right for her. when one type didn’t work, her doctor switched her to another, then another.
“i would get to a point on a medication where everything would level out and then i’d start doing the roller coaster where my numbers would be up and down all the time,” she recalls. “on top of that, nobody told me about counting carbs or finger pricking [to check blood sugar levels], or that i needed a cgm [continuous glucose monitor, a wearable device which tracks blood glucose levels every few minutes and transmits readings to a smartphone]. it was a pharmacist who told me about that.”
when she was prescribed insulin, she had many questions but little access to the health professionals who could answer them. so again she turned to her pharmacist.
“it wasn’t until the first time i had a low, i called my pharmacist and told him what i was feeling, what my number was. he told me to take a few breaths, that he’d stay on the phone with me while i got something to eat, and that we’d work through this.”
understanding a type 2 diabetes diagnosis
more than 11 million canadians live with diabetes or prediabetes (which can develop into type 2 diabetes), and that number is on the rise, according to diabetes canada. experts believe the uptick in numbers is due to the aging population, lifestyle, barriers to healthy food, and heredity.
when the body either can’t produce enough insulin, a hormone produced by the pancreas to regulate blood sugar, or can’t properly use it, too much sugar lingers in the bloodstream and isn’t converted into energy, which can cause serious health problems.
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the three main types of diabetes include type 1, an autoimmune disease which generally develops in childhood and can’t be prevented. people with type 1, roughly 10 per cent of cases, aren’t able to produce their own insulin so they have to inject it themselves.
type 2 diabetes is the most common type, accounting for about 90 per cent of cases. people living with type 2 can’t produce enough insulin or can’t properly use the insulin their bodies make.
between three and 20 per cent of pregnant women develop gestational diabetes during pregnancy when their body can’t produce enough insulin to adapt to the growing baby and changing hormone levels. when the baby is born, the diabetes usually goes away, although the mother and baby are at higher risk for developing type 2 diabetes later in life, according to the cdc.
the most common signs and symptoms of all types of diabetes include unusual thirst, frequent urination, weight gain or loss, fatigue, blurred vision, frequent infections, cuts that are slow to heal, tingling or numbness in the hands or feet. these can develop slowly and in fact many people live with diabetes for years without realizing it.
the good news is, they can live long and healthy lives by keeping blood sugar levels in check, reducing stress and maintaining a healthy lifestyle and body weight.
type 2 diabetes management and treatments
after trying several times to get her doctor to refer her to the regina diabetes clinic, moore’s nephrologist finally connected her, and she began learning more about managing her disease.
it was there that she also learned about the drug ozempic, approved to treat type 2 diabetes with the side effect of weight loss.
“i was on that for a bit, it helped and i lost weight. my meals were cut in half of what i normally had [because] i just was not feeling overly hungry anymore.”
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in 2020, however, when moore and her husband wanted to start a family, her endocrinologist told her to go off ozempic because it has not been tested for safety in people who plan to become pregnant. she’s now on insulin and metformin, a drug that also treats pcos, which she ultimately was diagnosed with after the earlier test came back negative.
“last november, when we were doing the fertility testing through an obstetrics doctor, we found out that i had gone seven years without being diagnosed with pcos, which leads into diabetes,” she says. “the other doctor only did a blood test; he did not follow up with an ultrasound to see the state of my ovaries. so if this had been caught sooner, things would have been completely different.”
moore says her medications are covered by a combination of health plans from saskatchewan health care, her work insurance, and the special support plan suggested to her by a pharmacist. her continuous glucose monitor is only covered via her employee insurance, but she must pay for it upfront, which costs $299 a month, and get reimbursed later.
now that she’s in a groove with the proper meds and lifestyle plan, moore says she’s more comfortable living with diabetes, but it does take work. “it’s like another full-time job on top of my full-time job” working for the local health authority as a receptionist and billing clerk.
even though she has the glucose monitor, she still checks her blood sugar levels through finger pricks several times a day, including before and after meals. “especially if my sensor’s saying i’m having an urgent low, but i don’t feel like i am, so i do the finger prick and i’m like, oh, i guess i am. a lot of people say, ‘when in doubt get your meter out.’ so that’s what i live by.”
as for the emotional toll of living with a demanding disease, moore says there have been days when she’s wanted to throw in the towel. “i just get tired and angry because nothing is going right, i’m not in range, i’m having too many lows. i just don’t want to do it anymore. in the beginning it was very hard because i felt like, ‘why am i being punished for this? i didn’t do anything wrong.’ but it’s just how our bodies are. diabetes is caused by a combination of factors, many of which are beyond our control.”
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moore says she also contends with the ongoing battle around stigma and stereotyping. she says people assume bigger people who are diabetic have a poor diet and don’t care about themselves. “but no, there’s something medically wrong with me.”
family and facebook support groups for type 2 diabetes
moore logs into a few support groups on facebook, including glucology by ibd medical, and talks to a few neighbours she’s discovered are also diabetic. but she would like to see more support services available, which would include a team comprising an endocrinologist, a diabetes educator, a pharmacist and a dietician.
now that her family physician, endocrinologist, obg, and eye doctor are all on the same page, she can exhale a bit. for others living with diabetes, she says it’s important to advocate for yourself as best you can because it’s easy to fall through the cracks.
“if someone’s not listening, keep advocating, keep figuring out who to talk to. rely on other diabetics to help you navigate a bit more,” she says. “what they do may not work for you but you can learn more about what’s available.”
to learn more about what’s available, check out provincial diabetes clinics or diabetes canada.
robin roberts is a vancouver-based writer.
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