Dr Louise Johnson explains why diabetes can be classified as an invisible disability, but stresses that the term disability should not be used to describe a person as weaker or lesser than anyone else as everyone has a purpose, special uniqueness and value.
Diabetes distress
Living with diabetes is complex and involves various self-care activities, e.g. taking medication, healthy eating, carbohydrate counting, physical activity, checking blood glucose and problem solving5. These self-care behaviours are required to keep HbA1c (the three-month predictive glucose value) in target range – usually between 6,5% and 7,5%, according to the individualised value your doctor has decided on, after discussion with you. The HbA1c should be on target to prevent or delay onset of devastating complications.
The burden of self-management, living with diabetes-related complications (or the risk of their development) and managing difficult social situations has the potential to cause considerable emotional distress. The concept of diabetes distress was recognised in the early 1990s. Data shows that about one quarter of UK adults with diabetes experience elevated or severe diabetes distress at any given time. Similar rates are reported in Europe, Australia, and the USA6. It is also documented that diabetes distress is present among partners of those with diabetes.
Diabetes distress is the emotional response of specific aspects of living with and managing diabetes. The data shows that the higher the diabetes distress, the poorer the HbA1c. Your doctor can use different diabetes distress scales to determine your amount of distress and help with the management of it. Remember that diabetes distress is not depression.
Why would diabetes be an invisible disability?
To answer the question, let’s first look at the definition. The Oxford dictionary defines disability as: “the condition of being unable to perform because of physical or mental unfitness.”
Invisible or hidden disability is defined as disabilities that are not immediately apparent. This is an umbrella term that captures a whole spectrum of hidden disabilities or challenges.
It is estimated that 10% of the population in the USA have a medical condition that could be considered a type of invisible disability. Nearly one in two people, in the USA, have a chronic medical condition of one kind or another, but most of these people are not considered to be disabled, as their conditions do not impair their normal everyday activities.
According to the American Disabilities Act (ADA) of 1990, an individual with a disability is a person who:
- Has a physical or mental impairment that substantially limits one or more major life activities.
- Has a record of such impairment.
Invisible disabilities can include chronic illnesses, such as kidney failure, diabetes and sleep disorders; if these diseases significantly impair normal activities of daily living. Epilepsy, ulcerative colitis, and Attention Deficit Hyperactivity Disorder (ADHD) can also be classified as invisible disabilities.
A growing number of organisations, governments and institutions are implementing policies and regulations to accommodate persons with invisible disabilities. Governments and school boards have implemented screening tests to identify students with learning disabilities, as well as other invisible disabilities.
Statistics of invisible disabilities
About 10% of Americans have a medical condition that could be considered an invisible disability. It is shown that 96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device nor show that they have a medical condition. About 25% of them have some type of activity limitation, ranging from mid to severe; the remaining 75% are not disabled by their chronic conditions.
Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognise or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.
South African data shows that people with disabilities generally experienced career advancement challenges and reach career plateau. This study indicated that there is prejudice against invisible disabilities, and as a result, employees are reluctant to declare their disability7.
Why define invisible disability?
In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well-managed or a mountain that creates serious changes and loss. Either way, this should not be used to describe a person as weaker or lesser than anyone else. Everyone has a purpose, special uniqueness and value, no matter what hurdles they may face.
If we take this into consideration, then the answer to the question, “Is diabetes an invisible disability?” should be yes, but only occasionally. It is important to keep into consideration the fact that there will be times when you’re not able to perform certain tasks due to a hypoglycaemic event. It is important to let your colleague or supervisor know and to take time out and correct this event.
In the case of a light hypoglycaemic event, it would take 15 to 30 minutes before the person is able to continue their work. This is an average, and dependent on the fact whether there are other co-morbid conditions also present in this patient, such as kidney failure or a previous heart attack or stroke.
Other complications
Diabetic patients that are not aware of their hypoglycaemic event are in a high-risk group. It is suggested that they wear monitors that can alert them of the lowering of blood glucose to enable them to act timely. There are a few continuous glucose monitors (CGM) available in South Africa.
The hypoglycaemic unaware diabetes patient usually has long-standing diabetes (more than 20 years) and has a degree of kidney failure. It should be noted that this could occur in a diabetic patient with a shorter duration of disease, if they have frequent hypoglycaemic events. The consequence of this is the body becomes use to the lower blood glucose, and its warning system only switches on very late.
The diabetic patient with complications, such as progressive retinopathy (bleeding eye disease), chronic end-stage kidney failure on haemodialysis, and amputations need some special arrangement with their work. The person with progressive diabetic retinopathy may need special measures to help with reading while patients on dialysis need time off work two to three times a week to get dialysis. There are dialysis units that operate at night to accommodate working people. This prevents absence from work.
This invisible disability is transient in the beginning due to the low and high blood sugars but can become a permanent disability. The disability only becomes evident when there is eyesight impairment, amputations, and chronic kidney failure on dialysis.
All patients should realise they can be proactive by gaining knowledge and prevent the invisible disability from becoming an overt disability. Knowledge is power; use this power to manage your diabetes as well as you can with the help of your diabetes doctor. Remember that you are unique and have a special purpose in life. You can rise to the occasion with the help of your diabetes team.
References:
- Peeples M, Tomky D, Mulcahy K et. al. (2007) ‘Evolution of the American Association of diabetes Educators’ diabetes education outcomes project.’ Diabetes Educ. 33 p794-817
- Dennick K, Sturt J, Hessler D et. al. (2016) ‘High rates of elevated diabetes distress in research populations: a systematic review and meta-analysis.’ Int Diabetes Nurs. http://dx.doi.org/10.1080/20573316205720161202497.
- Potgieter IL, Coetzee M, Ximba T (2017) ‘Exploring career advancement challenges people with disabilities are facing in the South African work context’ SA Journal of Human Resource Management ,15(0) p815 http://doi.org/10.4102/sajhrm.v1510.815
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