How to self-advocate with your healthcare providers

Living with type 1 diabetes (T1D) is 24/7. Every day you must make decisions around meals, exercise, rest and more. It is the only condition that requires a daily manual replacement of the function of an organ, which is done through administration of insulin.

An often-overlooked aspect of living with T1D is how this can train a person to be compliant. Learning how to manage injections, finger pricks, frequent medical appointments, and interventions, (particularly if you are diagnosed as a child and your parents asked healthcare providers questions on your behalf) can result in a lifelong challenge of expressing your needs due to this learned compliance. This is particularly an issue if you become reluctant to express your needs to your healthcare team, out of fear of seeming less ‘compliant’ with your diabetes management.

Open communication related to your health is essential to getting the treatment you need. Learning the skills needed for open communication are essential to advocating for yourself with your healthcare providers and thereby being able to best manage your T1D. But learning how to do this without shame or feeling like you are ‘burdening’ your diabetes healthcare team can be hard.

But if you don’t feel comfortable bringing up concerns with your healthcare providers, you could potentially develop diabetes complications that will go unaddressed or even undiagnosed. This is especially true for people with T1D and feelings of guilt, shame and distress that can come around disease management, known as ‘diabetes distress’.

A person with T1D could eat exactly the same meal at the same time, administer the exact same amount of insulin, do the exact same amount of activity, and get the same amount of sleep and have wildly varying blood glucose levels day to day. So many factors combine, such as stress, hormone levels, potential illnesses like a cold – but even knowing this intellectually doesn’t necessarily prevent a person from feeling emotionally like they are ‘failing’ in their T1D management.

Preparing yourself ahead of your doctor’s appointments and reminding yourself that your needs are as important as any of their other patients, and that your healthcare provider wants the best for you will help you go into appointments more confident to advocate for yourself.

Articulating your needs might feel awkward, particularly if you were used to your parents doing this on your behalf, or you don’t feel like you have a right to take up too much of your doctor’s time. Practicing ahead of time, or even writing a checklist of items to discuss and sending these to your healthcare provider ahead of time could make you feel better prepared to cover all your concerns during the appointment.

Remember that your doctor can’t know your needs unless you properly and thoroughly communicate them. And every patient is an individual, and what works for one person with T1D may not work for you. Ensuring your healthcare provider has all the available information can better allow them to tailor a care plan specific to your needs.

By learning how to advocate for yourself and being willing to have open conversations – you will create a more transparent and progressive relationship with your healthcare provider which should lead to future discussions becoming easier for you.

Another often overlooked aspect of T1D care is mental health. In addition to the constant physical management required to live with the condition, diabetes carries with it a significant psychosocial burden and a greater risk of mental health disorders including anxiety, depression, and eating disorders. It can be challenging to discuss this with your healthcare provider. Unfortunately, while we have come a long way to being more open about mental health, there still exists some stigma and shame around having mental health challenges. However, it is known that mental health can directly affect blood glucose levels and T1D management.

Learning to be open with your diabetes care team about your physical needs will ideally make it easier to also discuss any emotional issues, and to determine whether further care and interventions are needed.

When to ask for support

If your diabetes management is off track, ask for support. You may need a treatment change, or outside stressors like work or relationship challenges might be affecting you more than you realize. Feeling empowered to have frank and honest conversations with your healthcare provider will better help you know when further support in the form of a mental healthcare specialist is needed.

It may be useful to take a step back to determine what the problems are and get support. Talking to other people who understand is very important. JDRF has resources to help connect you to others in the T1D community or a mental health provider.

To better help address some of the many gaps in mental health support for people with diabetes, in 2021, JDRF Canada launched a Mental Health Strategy to fund research, train mental health providers, and engage and educate healthcare providers and the type 1 diabetes community on mental health.

The Mental Health + Diabetes Training Program, designed and implemented by JDRF Canada in collaboration with Diabetes Canada, is helping to fill this gap in Canadian health systems, along with Mental Health + Diabetes Directory. The Directory is intended to act as a connection tool, to provide people living with or affected by diabetes with access to information about registered mental health providers who have engaged in additional training to provide mental health support specific to addressing the realities of living with diabetes.

Your health matters. Your needs matter. A good healthcare provider recognizes this and will encourage free and open communication. Self-advocacy isn’t linear. Some days you won’t feel as confident, and you might feel anxious before seeing your healthcare provider. This is completely normal. Just keep the lines of communication open and always remember that your health is as important as any other person or patient.

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