The power of family support and dia-buddy friendships in easing diabetes management

Written by Sewanyana Rodney Alex

November is diabetes awareness month and the theme this year is "The Family and Diabetes." As I tell you my story of living with type 1 diabetes, I hope you can tell how big of an influence family can have on how patients manage their diabetes and appreciate that our fellow diabetes warriors are a family as well.

Facilitating an ice breaker session at an education class organised by Africa Diabetes Alliance

1^st November 2019 marked exactly 2 years since I was diagnosed with Type 1 Diabetes. At diagnosis, I didn’t have knowledge or any idea what I was going to have to deal with for the rest of my life. I remember the nurses trying to teach me the basic steps of managing diabetes which included which foods to eat, how to exercise and the amount of insulin I needed to survive for another day. However, the way the nurses were referencing each other, it was evident that they were sharing some hazy information. Being the new kid on the dia-block and seeing that the people I was trusting were not well-versed with what they were sharing left me in yet another puzzling situation. After three days, I was discharged from the hospital and into the world to live a normal life and manage this pretty much challenging condition.

With my brother and family

Fortunately for me, my brother Lawrence had been diagnosed with type 1 diabetes a few years before me and he was able to share his own experiences with me. After two months of my diagnosis, he was the only one who knew that I was living with diabetes. For all that while, we lived and learnt from each other until there was nothing more to share from each other. I knew he still had his struggles with diabetes too but talking about it got us bonding so as to curb and manage it. However, I had a longing to meet other diabetics aside from Lawrence.

Working together to learn about rotating injection sites at a recent ADA education event

Truthfully, change is not an easy thing to embrace, my failure to embrace change was accompanied with denial, and with denial came mild depression and withdrawal/isolation at an early stage of managing this condition. The early stages after my diagnosis were coupled with blurry vision, frequent hypoglycemia/hyperglycemia roller-coasters, confusion, extreme tiredness and countless frustrations which got me feeling worthless at work, home and school. Out of kindness, my workmates thought it wise to offset some of my tasks and duties from my daily routines which in my opinion got me feeling less of a human. I truly understood why they felt sorry for me, but it got me feeling that I could no longer do the things that any other non-diabetic person could do and this made me quite uneasy.

So I increased my efforts to live my life like a non-diabetic and in denial, I tried to get involved in anything and everything that could prove that as a diabetic, I can be anything that I have ever dreamt to be and that my condition can’t stop me from becoming what I will, sometimes to my detriment. Mindless of my struggles, and needing to prove a point, different feelings got me worried and uncertain of what the future held for me. With the uncertainties and confusions about how to keep my blood sugars in check, I started wondering, “Why Me? What did I ever do to deserve such a fate?” In addition to these questions, came serious fear of public judgement of my diabetic condition. Dealing with the condition in isolation got me depressed and fighting lots of internal battles, just to be able to live another day. I knew things were not going as well as I liked, and my HbA1c, a blood test that can help assess how we manage our blood sugar over 3 months, was a bit high, but I had no idea how to improve things.

At a practical Nutrition demonstration held by ADA for people attending the first ever patient exhibition hosted by Uganda Diabetes Association on 14th Nov 2019, World Diabetes Day.

Fortunately, in January 2018, I met Edith Mukantwari from Africa Diabetes Alliance (ADA) and for the first time in three months I felt like I was close to getting the question of “Why Me?” answered. At ADA, I met awesome dia-buddies, from whom I learnt that, not only am I not alone, but also I had a new team from whom I could learn and share my experiences with. I realised that the challenges I face every day are similar to those of my fellow dia-buddies face, and that talking with them was very therapeutic for me. I didn't know just how much I was doing wrong until I started learning about diabetes management, nutrition, exercise and such. Now that I know better, I can actually advocate for myself better so that I have what I need to keep my health in check and get my work done better. ADA is a patient-led organisation focused on empowering people living with diabetes by providing much needed diabetes education and psycho-social as well as peer support. All ADA programs are geared towards empowering us to live our lives to their full potential. ADA organises different educative workshops talking about various aspects of diabetes management for example nutrition, exercises, psychological support and mental health, where everyone can ask questions and share their experiences. I remember one particular  education session was on mental health where all of us as dia-buddies shared a time where diabetes got us in a situation of unhealthy mental states like anxiety, worry, fear and depression. To my amusement, during this whole sharing session there was no judgement but rather a feeling of security. It’s at this moment that I realised that I was in the right place to disarm diabetes on a daily basis.

Hanging out with dia-buddies at the recently concluded Advocacy Camp for young adults living with type 1 diabetes from anglophone countries, held in Ethiopia hosted by the International Diabetes Federation-Africa Chapter 

I’ve learned to wake up confident to face new challenges and become more aware of my responsibility to keep myself healthy through following doctor’s orders, testing my blood sugar, making better health decisions; like what to eat and what to avoid, when to eat and how much; and giving feedback to my doctors about my treatments as well as asking questions to understand better. My health begins with me, and I am the expert on my own body to know what best works for me and working with my doctor to ensure that my health remains good and my HbA1c has significantly improved since beginning to attend educative classes and engage with ADA. I do hope that with the positive changes I have made, I will be able to reach my target A1c of 7% before the end of 2019. Stay tuned to my Instagram @rodney_sewa to find out.

On this journey, my family has also played a great role in keeping me up to this task. Just like me, they too had no idea what diabetes was all about (Apart from hearsay and internet information-which is really contradicting). For that matter, my diagnosis hit them harder than me. Initially, most of them thought it was a temporary condition but on hearing that it was a permanent condition, they all got concerned to change reality. Out of desperation, they solicited all sorts of ideas to rescue me from this condition through approaching various herbal specialists and well known doctors. After a year of various trails, I was tired and decided to organize a class for my family, to teach them about diabetes. I equipped them with the right knowledge and from then, my family has become great advocates for me and passionate about passing on the right information about diabetes and best of all, they keep me accountable in my management. The theme for this year’s world diabetes awareness month, “The Family and Diabetes”, is really important because with family support and care, managing diabetes becomes a lighter load.

Meeting with the Uganda Diabetes Association President and Executive Committee to plan for the World Diabetes Day Celebrations

Working with ADA and the Uganda Diabetes Association (UDA) are new passions of mine. I have learned so much on this journey even beyond just managing my blood sugar better. I truly thought my condition had buried me, but it has opened up so many opportunities for me to help others like me. At last I believe I have found my purpose and got an answer to “Why Me?” I am living with diabetes and it has never been an excuse not to show up. I have lived to defy all odds popularly believed about diabetes in our community and I will continue to do so and show that it is possible to achieve my dreams even with diabetes being a constant companion. My desire to prove this point has pushed me to be a swimmer, a hardworking accountant, an advocate, a Type 1 ambassador, philanthropist, traveller, and a husband-to-be. I will certainly continue to do my best to disarm diabetes daily by collaborating with fellow warriors, ADA and UDA to advocate and improve our well being.