The challenge of living and overcoming diabetes

Today is World Diabetes Day. Mohammad Y. Al-Bahar, young advocate from Kuwait, explains what means to live with Type 1 Diabetes, coping with the daily challenges of this chronic condition and the social stigma and discrimination around it.

This year’s World Diabetes Day campaign theme is “Eye on Diabetes”. Screening for diabetes complications is an essential part of managing all types of diabetes. The International Diabetes Federation (IDF) invites everyone to take part in #TestToPrevent initiative which aims to achieve 1 million individual screenings recorded during November 2016.

Detecting Diabetes

I was diagnosed with Type 1 Diabetes when I was 2 and a half years old, my parents noticed I was slim, went frequently to the toilet, and drank plenty of water. Type 1 Diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Worldwide, only 5% of people with diabetes have this form of the disease.

The common symptoms of diabetes are fatigue, frequent urination, sudden weight loss, wounds that won’t heal, frequent hunger, blurry vision, numb or tingling hands or feet and frequent thirst. (2)

The prevalence of people diagnosed with T2D and T1D is 2 to 1. It is less common to have people diagnosed with type 1 diabetes in Kuwait since people diagnosed with T1D is only considered 5% of people with diabetes.

Early screening of diabetes is very critical, and will help people being diagnosed with diabetes to avoid complications in the long term, and that will have an impact on their medical expenses as well. (3)

As mentioned in the International Diabetes Federation (IDF) “Eyes on Diabetes” campaign toolkit 2016, 1 in 11 people worldwide have diabetes, 46.5% of adults with diabetes are undiagnosed, 12% of global expenditure is spent on diabetes, three quarter of people with diabetes live in low and middle income countries, and by 2040 1 in 10 adults will have diabetes, if this trend is not reversed. (4)

Living with Type 1 Diabetes

This chronic condition has a profound impact on the lives of the people living with diabetes along with their family members, partners and friends, financially, physically and emotionally. It is a 24 hour 7 days a week job to manage the condition and to be sure that the sugar levels are within the required range. It takes both physical and psychological energy and commitment.

Managing Diabetes

Living with diabetes requires 4 to 6 injections per day if your using syringes, 3 injections everyday if you are using an insulin pump, as well as checking your blood glucose levels by pricking your fingers not less than 3 times a day to be able to monitor your Blood Glucose levels, and be sure that it is within the required range, as well as other medications that may be needed, such as cholesterol, hypertension, cardiovascular disease, etc.

Carb counting is considered vital for people living with diabetes, since they need carbs for their daily intake, that will also help in managing diabetes, and be sure that the BG levels are within the required range, to avoid hypoglycaemia and hyperglycaemia.

Exercise plays a big role in the lives of people living with diabetes, many people working out have less insulin intake, less insulin resistance, as well as reduced stress levels, which have an effect on people living with diabetes HbA1c levels.

Coping with Diabetes

Usually when people get diagnosed with diabetes, they will always look for a cure. Sadly that isn’t the case with diabetes, they will be loaded with nutritional, diabetes treatment and other aspects of managing the condition, and rarely shed the light on the psychological aspect of living with diabetes which plays a big role on our lives.

Living with diabetes is considered to be challenging, emotional and stressful. Many people diagnosed with Type 1 Diabetes can go through depression due to lack of diabetes management. It can be a financial challenge to live with it, since many people diagnosed with diabetes are from a low and middle income countries.

Discrimination towards people living with diabetes is also a major challenge, since there are many that don’t have the ability to get a job, proper education, or even get married because of their chronic condition.

Diabetes can also affect the lives of people living with a person diagnosed with diabetes, both emotionally and financially specially if the person lacks proper diabetes education, lack of insulin access and lack of professional and experienced medical staff care.

To be able to live a healthy life with diabetes, you have to overcome the belief that this condition will overtake your life. If you embrace it and you are willing to take all the medical and nutritional aspects in mind you will be able to overcome the idea that diabetes is your enemy.

You can then, deal with it as a friend (Companion) sharing a singular body. Once at peace with the condition, dealing with other aspects of diabetes management, which includes medication, blood testing, carbs counting and exercise, becomes less challenging psychologically.

Raising awareness about Type 1 Diabetes

I have started spreading awareness about my condition in 2012, through changing the misconception about diabetes in Kuwait society, starting from schools, universities and then spreading the word in the public and private sectors.

Then, I started to represent my life as an individual living with diabetes in the NCD Alliance Forum that was held in Sharjah, UAE in November 2015; the IDF World Diabetes Congress that was held in Vancouver, Canada in December 2015, and during the EMEA Nurse Symposium that was held in Vienna, Austria this November.

One of my key messages to healthcare professionals convened in these international fora is about the importance of integrating people living with diabetes in the decision-making processes. Involving us is a vital step that will surely have a positive impact on our condition.

Diabetes and discrimination

Many people living with diabetes worldwide get discriminated among their peers, schoolmates and colleagues at work. I have not been promoted although I’m competent and eligible for a promotion because the supervisors at my workplace saw that since I’m living with diabetes then I’m not able to handle the managerial position.

This other incident occurred to me during a flight from Hong Kong to Beijing. A flight attendant approached me before boarding the plane and forced me to hand her my insulin cooling case. I explained to her that I had the case because within an hour I would have to take my slow acting insulin. She replied back that this was not possible during this flight due to airline rules and regulations. Therefore, I was forced to hand her my medication case, and was terribly ill the next day because of not have taken my medication on time.

T1International

I have been involved with T1International since February 2014, T1Int. is a non-profit organisation, consisting of 24 team members from all around the globe (UK, USA, Kuwait, Kenya, Austria, Brazil, Canada, Tanzania, Saudi Arabia, South Africa, India, Ghana, Nigeria, Kenya), established by Elizabeth Rae (Founder & Director of T1International) who is also living with Type 1 Diabetes and a Young Leader in Diabetes.

T1International Vision is that we believe in a world where everyone with Type 1 Diabetes – no matter where they live – has everything they need to survive and achieve their dreams. Our mission is to work towards adequate access to insulin, diabetes supplies, medical care and education for all people living with Type 1 Diabetes.

We do this by raising awareness, campaigning and collaborating with existing initiatives, and supporting individuals and organisations on the ground that are working to make life better for people with Type 1 Diabetes.

Insulin for Syrians

Due to the war in Syria, and since there are many people living with diabetes that have limited access to insulin, "Insulin for Syrians" campaign was established by T1International in July 2016, to help raise awareness about the insulin access crisis for Syrians, including diabetes supplies and proper education. The campaign was a success, since all donations were restricted for insulin and other essential diabetes supplies for the people who need it most.

Through donations, our target was to raise £1000, but we have surpassed the limit to £9,388 for those in need. These funds went to our partners, the Syrian American Medical Society, who are heroically still working in crisis locations throughout Syria.

Diabetes can either be a blessing or a curse

I choose to help others living with Diabetes, through sharing my life with diabetes, changing the misconceptions about diabetes, and help others in need.

Diabetes has empowered me, inspired in me a sense of humanity, commitment, dedication to living a balanced life without limitations … so I’m thankful for my diabetes.

References

About the author

Mohammad Y. Al-Bahar was born and raised in Kuwait, he is the Founder and Project Manager of Diabetes Ambassadors Program since January 2014, that is focused on raising awareness in society regarding diabetes and changing the misconceptions about the condition. He is an Alumni of the Young Leaders in Diabetes program (1), established by the International Diabetes Federation (IDF), T1International Global Advocate for Insulin Access since February 2015. He is also a Mentor in D Partners program, that was established by Training Gate International for people living with Disability in Kuwait.