We often hear about stigma in relation to HIV and mental health, but did you know that diabetes also carries the same feelings of shame and blame? Read the story of two women, who share how diabetes stigma has impacted the quality of their life and management of the condition.
You probably already know diabetes is one of the biggest epidemics of the twenty-first century. Just about every article you read on the topic covers diabetes trends. If it’s not a scan of the statistical landscape of the disease, you get a pathobiological lecture on diabetic complications.
I am not going to write about that.
Instead, I am going to cover the often-overlooked issue of diabetes stigma. According to the Cambridge Dictionary, stigma is defined as a strong feeling of disapproval that most people in a society have about something, especially when this is unfair. Condemn, denounce, blame and shame are just a few of the related words of stigma.
For Narmeen Jamal and Felice Guimont, two women with type 1 diabetes, diabetes stigma is a prominent reality. Besides managing the daily struggles of living with the disease, both women bear the added burden of diabetes stigma—a part of their lives that’s not under their control. Here, they talk about the disheartening and negative repercussions diabetes stigma has had on them.
In a 40-minute interview, Jamal broke down five times. Diagnosed in 1986, in her early twenties, she explains how her family told her to keep the diagnosis a secret. “I felt so hurt and alone, like I was the black sheep of the family,” says Jamal. Feelings of isolation exacerbated in the home, as Jamal did not receive support to deal with the diagnosis, let alone to manage the disease. “I coped on my own, and no-one in my family came with me to appointments or talked about how I was doing. I became somebody who’s wasn’t important anymore, and they didn’t want to associate themselves with me,” says Jamal. Starved of reassurance, she instead was fed labels. “When my sugars were high, I would be exhausted and found self-care hard. My mum would call me lazy.” Such feelings of inadequacy have had a deep and lasting effect on Jamal.
She turned to her partner and shared her diagnosis. But it didn’t get any better; if anything, it intensified Jamal’s feelings of shame and blame. “He didn’t want anything to do with me. I blamed myself. What had I done to get diabetes? Why was it happening to me? Feeling ashamed was rough,” says Jamal.
How did Jamal cope? She decided to conceal her diagnosis, in fear that others would reject her too. She spoke of neglecting management in a public setting. “I would avoid testing at meals or miss my insulin so people around me wouldn’t find out. When my pump would beep, I would pretend it was my phone. I was very self-conscious,” says Jamal. The stress of keeping it quiet affected Jamal profoundly, who sobbed, saying, “I am not free.”
Attempts to hide her condition, as a result of the negative experiences she’d encountered, led to further anxiety and less self-management. “When I take care of myself, it’s a reminder that I have it, so I distract myself with other stuff and neglect it,” says Jamal.
The burden of diabetes stigma extends beyond the home and personal relationships. Guimont, who’s a nurse and a certified diabetes educator (CDE), recollects the countless number of times she’s felt stigmatized at work. She recalls overhearing co-workers say, “It’s her diabetes again. She uses it as an excuse.” Guimont says, everyone at my work knew I was a CDE, who also had diabetes.” She admits to being publicly singled-out because of her condition. “I was having breakfast with a co-worker and was asked by another office mate to bring her back a cinnamon roll.” Guimont explains, how the server, with a look of disdain and objection, shouted at her saying she couldn’t have a roll because she was a diabetic. “Everyone in the cafeteria was staring at me,” says Guimont. “I felt so humiliated.”
Co-workers criticized Guimont for not taking care of herself “despite being a CDE.” Indeed, to be discredited and faced with judgemental attitudes exacerbates feelings of guilt and shame. Guimont says, “I literally cried on my way to work for a whole year.”
On countless occasions, Guimont dreaded going to work. She feared that she wouldn’t be able to treat potential hypoglycaemic episodes (low blood sugars that can be life-threatening, if left untreated). “I would explain that I needed to treat it but would be made to defer treatment until my work tasks were complete,” exclaims Guimont. She gasps at the number of times this happened. “I wonder how I never became unconscious.”
Support from management was also missing. Guimont says, “They had issues with timing of meals or having to miss work due to a difficult night and would complain if I needed to attend doctors’ appointments.”
Fellow health professionals, who weren’t aware of Guimont’s diagnosis, perpetuated the diabetes stigma in the work place. She explains, “One doctor said how he hated those ‘damn non-compliant diabetics who just don’t care.’”
Telling diabetes jokes at social gatherings, with disparaging comments about someone’s weight, and scrutinizing their food selections, were, sad to say, common practice in the workplace, according to Guimont.
Findings from Nishio Ikuko and Chujo Masami echo what Jamal and Guimont describe. Their research examined stigma and coping strategies in adults with type 1 diabetes. Patients reported having a negative self-image and feeling like an outcast. Twenty-four adult interviews revealed that patients coped with the stigma by hiding their disease, or “pretending to be healthy,” by neglecting self-care. If these coping strategies failed, they would resort to limiting social interactions.
We’re fraught with examples where society, whether consciously or unconsciously, disqualifies those with diabetes. This is unfair. You wouldn’t hear derogatory labels for cancer patients, would you? We call them warriors, not “canceric” or lazy, and we’re mindful not to pass judgement. The disease does not define the person, and the diabetes community does not need disapproval; instead, it needs empathy and support. Let’s not add to the burden of managing diabetes. The stigma bears a heavy weight on self-management and can lead to poor health outcomes. Let’s strike out the stigma and put a stop to this blame and shame.
*A special thanks to Narmeen Jamal and Felice Guimont for sharing their struggles and journey with diabetes. You are an inspiration.
Do you have diabetes and struggle to manage blood sugars? Discover the 10 most important steps you can take to manage out-of-control blood sugar levels.
Catch Shahzadi and Felice on ReverseD, the first docu-series, tackling diabetes, by Charles Mattocks. RevereseD was seen on Discovery Life Channel this past Summer and is currently being aired on Cox Communications.0