This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents, specialists and people with diabetes have to say about living with the condition.
This month we interviewed Laura, who has lived with diabetes for almost 15 years. Diagnosed as a teenager, she is now an accomplished professional. She reflected with us on how her condition has affected her life over the years.
“This Will Not Affect My Life”
Those were the first words she pronounced, after waking up from the coma induced by the onset of diabetes. “At the time, I mostly worried about catching up with the school work I’d missed out on during my hospitalisation,” says Laura, “and making sure my academic future wasn’t compromised.” She was a quick learner and easily understood how to adapt her food intakes and inject insulin. So it seemed that Laura’s life would indeed continue on her terms.
“Looking back, my parents had a very pragmatic approach to my illness.” The fact that they let her be autonomous while at the same time reading up and becoming as knowledgeable as possible, empowered her to face the difficulties linked to her illness. “This helped cope with the anxiety of having to save my own life on a daily basis,” she says. They were just as good at keeping the right kinds of sugar lying around everywhere, as they were nudging her to make sure she had listed all the medical products she would be needing for an upcoming vacation.
At the same time, her parents helped her acknowledge that her condition meant she could now be considered handicapped. “I’m not sure I would have filed the paperwork to get an adapted schedule for my official exams,” says Laura, “because at the time I didn’t really want to admit that my diabetes could affect my stress levels, my memory or my concentration.” Transitioning from a “standard” person to a person with “special needs” was a gradual process.
“Don’t Compensate, Do Things Your Own Way”
Laura’s views on her illness have changed over the years. “I used to deal with my handicap by compensating to do things the same way as everyone else,” she says, “which is ultimately very tiring.” She would always want to finish every hike up to the top of the mountain, avoid adapting work hours to her sugar levels, and for the most part, her diabetes could go completely unnoticed.
Today, she has started to see things differently. She no longer wants to focus on the negatives – like the annoying checklists when packing for faraway travel destinations -, or the ideal achievements she should aim for – like the top of that mountain. “I’ve learnt to let go and accept that I’m already achieving so much, that I can derive satisfaction and pride without aiming for impossible goals.”
With this in mind, she sets up her own lifehacks or daily strategies. For example, when it comes to going to the gym, she has adapted her expectations. “After working out, my glucose levels can slump, despite my best efforts to maintain them, which in turn wears me out and induces a lot of stress.” So Laura stopped going at lunchtimes – to keep her afternoons at work productive – or the evening before important morning meetings. “And now I accept that sometimes, simple physical activities wear me out, and that’s fine, even if it’s non-gym related!”
“Education, Communication, Self Acceptance”
Laura has always explained her illness to her friends and colleagues. “Education is key, from the very beginning,” she says. For example, a diabetic child’s teachers and carers need to know what to do in case of an emergency. What’s more, there can be misplaced stigma and judgement around this illness, which can damage a child’s self-esteem.
However, what she didn’t use to speak up about easily, was her physical limits. Of course, people knew that she had to monitor her sugar levels during physically challenging activities. “Now I’ll ask how long I’ll be walking during a seemingly benign excursion around town or to a museum,” she says, “because, to me, it will make a difference if I walk 30 minutes or 3 hours today.” Being more open – and ready to accept these differences – gives her more leeway to adapt her strategies and reach her goals.
“Nowadays, using the word “handicap” is important for me,” she says. This hasn’t always been the case, and she’s grateful that her family, friends and colleagues adjust to her shifting identity as a person with special needs. “My feelings about this part of my identity will probably continue to evolve – and that’s fine.”
Final Words and Tips
- Being able to pitch the illness in relatable terms is very important. “What I’ve learnt, is that people need to know why I’m telling them about my diabetes“, says Laura. “So I try to use engaging language and explain the person’s role.” For example, teachers might need to be able to spot warning signs, employees might need to know you cannot come in earlier than a certain time, etc.
- “I’ve often felt guilty when my reading showed my insulin levels were off track,” she notes, “but really, it’s not a mark or a grade.“
- Tetraderm plasters changed her life (Laura has medical pumps attached to her body 24/7).
- When travelling: Laura uses Frio products to keep her meds cool and special boxes to keep used needles. You can check out some cooling bags on Irisada’s site here.