Susan's story
Susan Soares-Almeida
Vancouver, Canada
Suffers from Type 1 Diabetes
I always lived with a strong fear of being diagnosed with Type 1 Diabetes. My earliest memory of my father was of him wincing as he injected his tummy with insulin. I was maybe 3 years old and I just assumed all fathers did that, as it was what I witnessed at every meal of the day. It was only when I was 8 years old, and my older sister, Anabela, was diagnosed, that I came to realize what my father had been dealing with all along, much of which he had tried to keep hidden from our views.
I’ll never forget my sister’s fourth grade teacher calling our home from school and telling my mother that Anabela had spent most of the day in the hallway drinking from the water fountain and then, asking to visit the bathroom again and again throughout the day. The silence from my mother on this side of the line, as she listened so intently, still haunts me today. I remember how she quickly hung up, ran to my father in the living room, sobbing and shouting what the teacher had called about, and my father fumbling to grab his urine test strips.
Back in the mid 80s, blood sugars were tested through the urine. My sister or I had no idea what was happening around us, but we could sense the desperation in my parents. Anabela, a shy ten-year-old, was whisked away to the bathroom. And about 15 minutes later, my parents emerged from the doorway, puffy eyes, both sobbing as they told me they had to take Anabela to the emergency at BC Children’s Hospital.
As I got older, I witnessed first-hand the daily struggles my sister and my father endured, day after day. The only solace being that they had each other to lean and cry on. Over the years, people have often said to us “be thankful you have diabetes and not cancer” or “if you take care of yourself, you can live a long life.” The thing is, unless you’ve walked a mile in our shoes, you have no idea the minute by minute struggle or the everyday ups and downs that diabetes brings to both your mental, emotional, and physical state. It’s draining. It’s a known fact that many people with diabetes have a strong degree of depression. It makes sense. Imagine having to constantly think about and analyze what you’re eating, what you’re drinking, what you’re feeling, what kinds of activities you’re planning to do or have already done. You’re constantly ‘on’ and you can’t turn off diabetes. If I want to take a nap on my couch or go to bed early, I can’t just do it; I have to do a multitude of things before I can fall asleep. I can’t go for a swim in my pool unless I’ve checked my blood sugar and made some corrections. And imagine if it’s a super warm day outside and I know that aside from getting a workout from lap swimming, I’m also going to be sweating. Even if I’m not hungry, I will still need to have something to eat before the swim, for fear of having a low blood sugar while in the pool. If I want to jump on an airplane and fly to Japan tomorrow, I can’t just do it. I’d have to make sure my blood sugars have been relatively good, and that I have enough insulin, test strips, needles, lancets, batteries for my glucometer, etc. to make it through my time out of the country.
You see, there are just so many obstacles and challenges to doing just about anything. In some ways, diabetes robs you of your freedom. Fear hangs over your head at every moment. Before having diabetes, no matter what I ate or how active I was, my blood glucose levels stayed within normal range. Now there is the constant fear of the dangerous lows and no one being there to help you or knowing what to do, and fear of the dangerous highs and future complications it can bring to your heart, your eyes, your kidneys and your limbs. I remember as a non-diabetic being judgemental of my sister and father, like “why can’t you just get things right?” “Should you be eating that, really?” “Another low? Wow, you aren’t taking this seriously?” Before being diagnosed, I was ignorant. I didn’t realize that diabetes isn’t just controlled by what you eat or drink. It’s also affected by your hormones (menstrual cycle), stress levels, illness (yes, even the common cold), side effects from other meds, alcohol, being underactive or overactive, being dehydrated, and being in short-term or long-term pain. Frankly, there’s so much out of your hands. Finding a way to remain calm and patient in moments where diabetes interrupts your life is really the key.
I had just graduated from the teaching program at the University of British Columbia and one of my professors invited me to join them on a research project and in turn, work on my Masters of Education degree. I was interested, but I knew that it would involve a great deal of work, having just completed the intense UBC Bachelor of Education program. Meanwhile, I had just been hired as a substitute teacher for the Vancouver School district right out of the program. But amid all of my hesitations, I jumped in, full-force, eager and ready to learn as much as possible.
After a few months in, I noticed that I was losing weight. At first, I simply attributed it to my stress level. I had always been a size 8 and as the months passed, I went down to size 6, then 4, then 2 and then 0. All of my bottoms had to be held up with belts. I had gone to visit my parents one weekend and my mom noted as I got up to leave. “You are looking a lot like your father when he was diagnosed with diabetes. He had belts around all of his clothing too. Is everything ok?” I wondered how I could lose all this weight, seeing as I wasn’t doing anything out of the ordinary. It’s not like I was going to the gym or running marathons. The thought had crossed my mind; perhaps I might have something more serious going on, but with no other symptoms as of yet, I just ignored my mom’s observation and plowed onward, blocking those negative thoughts out of my mind. To be frank, at this point in my life, I didn’t have time to ponder these thoughts. With a part time teaching position, full master’s work load, writing my master’s paper, and a serious relationship, I wasn’t eating well, sleeping well or exercising, and felt like I was always rushing to keep steady with everything going on.
It wasn’t until a few months later that I noticed a big change. One day I woke up and I was just so thirsty. I couldn’t get out a complete sentence without my tongue getting stuck to the roof of my mouth. My lips were so chapped from all the licking. I was so parched. I would go into a class with a full glass of water and within a 40-minute period, ask students to fill my glass at the water fountain multiple times! As well, I felt the urge to urinate all the time. I was constantly in the bathroom, and when I would leave, I would head right back.
At this point, I knew from my sister and father’s diagnosis stories what was happening to my body. I tried to hide it and make excuses (to myself) about what was happening. This went on for about a week and then the day came where I just couldn’t take it anymore. Aside from the extreme thirst and urination, I had a foggy brain and difficulty breathing. I couldn’t think straight, and somehow, I ended up at my parent’s place. I told them that I thought I had diabetes. The same desperation I had witnessed in their faces back when my sister’s teacher had called our home, had now returned.
This was 2003, and at this point, blood sugars were checked using a glucometer machine. My dad hesitantly pulled it out and checked. The machine read, TOO High, see a doctor immediately. I broke down. My diagnosis had arrived. My life was thrown upside down.
I was admitted into hospital immediately, after I told the triage nurse I knew I had diabetes, she chuckled and said “and how do you know that? Are you diagnosing yourself?” But, I was right. I was connected to an IV within 30 minutes. It gave me insulin and a whole gamut of other minerals and chemicals that were desperately lacking to regulate my body, as I had gone into ketoacidosis. My body had begun to breakdown muscle and fat tissue to use as fuel to survive. The emergency room doctor told me I was lucky I had arrived then, as ketoacidosis can be very damaging to the body’s internal organs. Those days I spent in the hospital after being diagnosed are a blur to me now.
I remember the sadness I felt when I looked back and thought about the freedom I had felt just a week prior, when I had eaten a slice of birthday cake at my boyfriend’s birthday party. I was resentful that I hadn’t enjoyed it enough and that I had simply taken such a tiny slice of freedom for granted. It’s one thing to see your father and your sister struggling everyday with this life sentence but when you are suddenly handed the same sentence, it’s hard to swallow, because you know what awaits you.
I’ll never forget having to administer my very first shot. It was a surreal experience. I had given both my sister and my dad their shots before, many times, but suddenly I was having to inject myself. Those first few days were tough. At times, I felt depressed. I felt like I should just give up, yet somehow, deep down, I knew I had a lot to give to this world.
After a few months, I felt like my body was getting back to normal. I gained back nearly all of the weight I had lost. I was able to get back to work and finish off my Master’s course work. It wasn’t easy, but I took it one day at a time, just as I do now. Having my sister and father on the sidelines has been my greatest asset in dealing with this illness, especially in the early days. If I was ever unsure about how I was feeling, or what correction I needed to make to my insulin intake or if I should exercise or not that night, I always knew I had someone I could call. I’ve met a lot of new-diabetics in my 16 years, and one of the biggest challenges is feeling alone. Only 10% of people in Canada struggling with diabetes is diagnosed with type 1. Most struggle with Type 2, and although some of the symptoms and treatment are similar, both types are vastly different.
I have always been a very focused and ambitious person. So, once I accepted my circumstances, I jumped right in. I started volunteering with the Juvenile Diabetes Research Foundation and at the Canadian Diabetes Association. I volunteered to go into elementary schools and retirement homes and speak openly about living with diabetes. I organized walk teams for multiple years at the “Walk to Cure Diabetes” for JDRF. As time passed, I came to accept wholeheartedly my situation and to ponder that perhaps, it is my purpose in life to teach others about diabetes.
Amidst all the fear and challenges, I haven’t let my diabetes prevent me from having some pretty amazing moments in my life, like traveling abroad and trying a variety of extra-curricular activities.
Having an illness has made me a more compassionate and empathetic person, but I haven’t always met others who are as understanding to my circumstances. I’ve had people say some pretty unkind things, but then I remember how judgemental I was as a non-diabetic, and I realize that they’re simply ignorant about what it means to live with diabetes.
When my sister was diagnosed at age 10, there weren’t many positive examples of people living with diabetes. In fact, my sister was told that she probably wouldn’t be able to have children one day, due to her endocrine condition. Women with type 1 diabetes have an increased risk of adverse pregnancy outcomes when compared to the general maternal population. The risks to offspring include a greater risk of congenital heart disease, neural tube defects and perinatal death. As well, there is the increased risk of the child developing type 1 diabetes.
I’ve been very fortunate to have outstanding doctors, nurses, and dieticians to work with. Aside from these professionals, I was also referred by my family doctor to an eye and foot doctor to prevent any future complications. When I first met my endocrinologist, Dr. David Thompson, he told me that when the time came and I was ready to have children, he would be able to assist me. After 4 years of living with diabetes, I told him I was ready. I was referred to the Diabetes Clinic at BC Women’s Hospital. I was told immediately how important it is to plan a pregnancy with diabetes at least 3 months in advance of becoming pregnant. I was given a prescription for folic acid and reviewed the benefits of tight blood glucose control so I could prevent the birth defects and neural tube defects attributed to mothers with type 1 diabetes.
“Having an illness has made me a more compassionate and empathetic person, but I haven’t always met others who are as understanding to my circumstances. I’ve had people say some pretty unkind things, but then I remember how judgemental I was as a non-diabetic, and I realize that they’re simply ignorant about what it means to live with diabetes. ”
Once I was pregnant, my diabetes management changed. As the baby grew inside of me, things became increasingly challenging. I needed more insulin (lots more!) and more time off to visit my multi-disciplinary team of health-care professionals, sometimes on a weekly basis. Aside from these visits, I was able to call my endocrinologist (or an on-call endocrinologist) round the clock to ask for assistance with my blood sugars. It always amazed me how I would call the number and within minutes a doctor or nurse would call me back with instructions on what to do. I never felt alone.
With all the struggles, my eldest daughter, Ella, was successfully born via C-section in 2007. And a few years later, I had my youngest, Ava. Every year that goes by, I count my blessings that they have not yet been diagnosed. But it is a constant fear for me and for them. Just as I learned about my father and sister’s everyday struggles, my girls have also witnessed first-hand my diabetic journey with its many challenges. One of my goals is to stay as healthy as I can be, so that I can be around to witness them as they grow up, follow their dreams, and make a life of their own.
Working as a teacher now, I always start off the school year by teaching my class about diabetes, as it is a huge part of who I am. If I’m open and honest, then there is nothing to be ashamed about. I’ll never forget the two times over the past 18 years that I’ve had students in my class with type 1 diabetes. It has been a great honor for me to be their teacher and to share the everyday struggles with them. One of my life goals is to write a picture book for classroom teachers and families that can be read aloud and introduce audiences to the challenges of living with diabetes but does so in a child-friendly way.
Living with diabetes can sometimes feel like a death sentence. Checking blood sugars at least 5-10 times a day and sticking myself with needles at least 4 times a day can be mentally, emotionally, and physically draining. On top of that is the daily reminder that diabetes can shorten your life expectancy by 15 years and that it is often misunderstood by millions of people. But what I’ve learned living with my chronic illness is that you have good days and you have bad days. You have days where you are thriving and other days where you are just surviving. Strength grows in the moments where you think you can’t go on, but you just find the strength to keep going. Here’s to the many people around the world struggling with type 1 diabetes, like me and my family. You are fighters, survivors, and warriors. To those fighting this same battle, that most people don’t understand or know about, just know you are not alone, just keep pushing forward.
By Michel Wahba