My invisible disability

In late 2015, while 7 months pregnant, I was diagnosed with Myasthenia Gravis (MG).

I like to call it an “invisible disease” because although it is utterly debilitating, no one can see it when they look at you. My first symptom was a droopy eyelid.

It seemed like something small that would go away on its own, but I became worried when it moved from one eye to the other.

I remember going to bed only to wake up with my left eye shut despite not having any earlier eye-related problems.

Then, three days later, my other eye shut down and I found myself walking around with a pair of droopy eyelids. As a result, I went to see a doctor, and this led to a slew of tests before I was eventually diagnosed with MG.

MG is a neuromuscular disorder which occurs when your immune system mistakenly attacks healthy tissue, in this case the neuromuscular junction, resulting into muscle weakness.

It has no cure but can be treated with medication and sometimes surgery. However, what is most challenging about it is that it is a snowflake disease. Patients have diverse symptoms and treatment options. So, there is no standard treatment and one has to try different options before you find what works for your particular condition. Further, it is a rare disease that affects 1 in 100,000.

Life of dependence

Since my diagnosis in 2015, the condition has gotten worse. After the droopy eyelids incident, I began experiencing double vision (diplopia) which made it extremely difficult to see or make steps on my own.

In a bid to reduce the symptoms, I went under the knife for a procedure called thymectomy. Despite the surgery, I continue to experience numerous difficulties, the worst being general body weakness and extreme fatigue.

My body can become weak to the point where I experience difficulty chewing, can’t climb stairs or walk effortlessly. Simple tasks like showering and even dressing myself are laborious. I also experience facial paralysis, double vision and breathing difficulties.

I still have to cope with incidences of double vision and droopy eyelids. I can’t live without assistance and don’t run errands alone .There are days when I can’t leave the bed due to muscle weakness..

At the time I was first diagnosed, I did not know or even understand how much my life was about to change. Since my diagnosis my life has been a long and undesirable stretch of unending hospital visits. I have had to put many things on hold, like completing my degree.

Further, treatment is costly, I currently take 12 pills a day which costs about Sh9,000 a month. My medical cover is barely adequate forcing my boyfriend and I to dig into our pockets.

Due to the expensive nature of the medications and my inability to work consistently, my family chips in to ensure we meet the high cost of drugs and associated dietary needs.

I try to live positively but that has not been easy. When I was first diagnosed with the condition, I went through a very dark period in my life. I hit rock bottom. Life as I knew it was no more; everything changed. The normal turned to abnormal while the simplest things in life appeared too hard to manage.

Things however got worse when the condition progressed from droopy eyelids to affecting my whole body. This left me completely dependent and bedridden most of the time. I was depressed.

Notably, the most frustrating thing about MG is that although it makes it difficult to perform simple tasks, most people tend to associate it with laziness because when you look at a person with MG they look normal on the outside.

Sadly, the society assumes that disability must be visible to qualify as one. The alarming lack of awareness on MG and other neuromuscular disorders is to blame for this misconception. That is why I am very passionate about creating awareness. I belong to a support group of 19; the MG Warriors. We meet regularly and intend to create a Community Based Organisation (CBO) that will empower and safeguard the interests of its members.