When Stigma Causes You to Break Up With Your Healthcare Team
Diabetes stigma is widespread in the healthcare space, but that doesn’t mean you have to put up with it. Learn how to recognize signs of stigma as well as ways to find a more supportive team to help you reach your health goals.
Visiting a healthcare professional should be a positive experience that leaves you feeling supported and empowered in managing your health. If you instead experience feelings of anxiety, discomfort, or shame when you see a member of your healthcare team, then it may be time to consider “breaking up” and finding someone new.
This was the experience that Crystal Hall, a mother to a child with type 1 diabetes, recalls having when she took her three-year-old daughter Brooklyn for an annual check-up.
“Our pediatrician told us that although Brooklyn was doing well developmentally and her A1C was trending down, her BMI was too high,” Hall said. “She then told me to stop feeding Brooklyn cookies and crackers and to start feeding her more whole grains.”
Instead of taking just a few moments to ask what Brooklyn’s diet actually looked like, her pediatrician jumped to the conclusion that she must be eating an unhealthy diet based on her weight.
“I was upset because she just threw out a blanket statement about Brooklyn without asking me any questions,” said Hall.
Stigma is not an uncommon experience for people with diabetes. A survey by dQ&A on diabetes stigma reported that 67% of respondents with type 1 diabetes feel that their healthcare team is on their side when it comes to diabetes, while just 39% of respondents with type 2 feel the same. In addition, 49% of respondents with type 1 said they didn’t feel blamed for their weight, while only 29% of type 2 respondents could say the same. (Weight stigma, though uniquely different, is often linked to diabetes stigma, and awareness of weight stigma is an important part of creating a stigma-reducing culture.)
These messages of judgment often stem from a conscious or unconscious belief that lifestyle choices and behaviors cause diabetes or that people just aren’t trying hard enough or taking enough personal responsibility when it comes to their health. In reality, diabetes is a complex condition that is affected by several factors such as genetics and a person’s environment, which should be taken into consideration by all healthcare professionals.
What can stigma look like in the healthcare setting?
Diabetes stigma can appear in many forms. It may be a blatantly offensive remark about your glucose levels, or it could be an unspoken suggestion that if you tried a little harder at the gym or cut out your favorite dessert, you would find it easier to manage your condition. Keep an eye out for any of the following indications that you may be experiencing stigma at the hands of your healthcare team:
- Charged language: Your healthcare provider should be able to communicate with you in a way that is free of judgment and bias. Using language – such as words like “uncontrolled,” “difficult,” and “non-compliant,” for example – that leaves you feeling responsible for your condition is a red flag.
- Hyperfocus on weight: If you bring up a topic or symptom you want to discuss with your healthcare team and they choose to only focus on diet and weight loss, know that biases may be getting in the way of effective care. Weight management can be important for better health, but it is not the only piece of the puzzle.
- Assumptions about your diabetes management: Remember that healthcare professionals should not make broad generalizations about your condition or statements about your health without any additional context about your life and any challenges you may be facing. Your care should be tailored to your individual needs, and it should be a collaborative partnership where you are working together to come up with health goals and a plan to achieve them.
- A bad gut feeling: Even if you aren’t able to pick up on clear signals of stigma but you nevertheless feel uncomfortable, ashamed, guilty, or fearful when you leave your healthcare appointment, there’s a good chance you are not getting the support you need and may be better served by switching healthcare professionals.
Why might it be important to ‘break up’ with your healthcare provider?
Research demonstrates that experiencing diabetes stigma can be a significant source of anxiety and stress. If unchecked, it can have a negative impact on mental and physical health. Studies have shown that stigma can contribute to a negative self-image, greater diabetes distress, avoidance behaviors like skipping appointments or screenings, and overall worse health outcomes, including higher A1C levels. Avoiding healthcare appointments can also result in delays in detecting complications and feelings of burnout or distress from a lack of support.
It may be easy to overlook one healthcare team member’s stigmatizing messages if you don’t experience it from others, but you should not have to tolerate stigma from anybody in your team. For a parent such as Hall, that meant switching providers, even though she and her daughter had developed a long-standing relationship with their pediatrician.
“I decided it was time to pivot,” Hall said. “ I’ve learned that hearing comments about weight can have lingering effects, and I don’t want those thoughts around body issues starting with my child at three years old.”
If you’re feeling uncomfortable with someone on your healthcare team, start by having an honest conversation. You have the right to speak up using constructive, non-blaming language about feeling unsupported. If you still don’t notice any changes in the way you’re treated or the way you feel around them, or you simply don’t feel comfortable or safe speaking up in the first place, know that it is most important to put your own needs first, which means finding someone better suited for you.
Tips for finding a supportive healthcare provider
- Connect with others who have diabetes or diabetes caregivers about healthcare professionals they like and have felt uplifted by. You can also reach out to your nearest ADA or JDRF chapter to connect with others in the community who are living with diabetes; often they will be the first ones to give you advice on finding a helpful healthcare team. You can also connect with people in the diabetes online community (DOC).
- Talk to your provider’s office about diabetes education programs for people with diabetes and their caretakers or loved ones. These education programs can help you set diabetes management goals, give you healthy lifestyle tips, and be a support system as you navigate the condition. The ADA and ADCES both have resources to help you locate a certified diabetes care and education specialist (CDCES) in your area.
- Don’t be afraid to shop around for providers that you can better connect with. At the end of the day, it’s important to find someone you can feel comfortable opening up to and entrust with your care or your child’s care who will support you through the ups and downs of managing your health condition.
Remember that managing diabetes with a supportive healthcare professional is challenging enough; you shouldn’t have to endure the added burden of stigma from somebody responsible for helping you achieve your health goals.
“If you’re not walking away feeling confident that it’s a good fit for you or your child, it’s okay to find someone else,” Hall added. “You are in the driver’s seat.”