Patient Education

A Plan for Dealing with Chronic Illness

September 14, 2017

15 min read

Somaneh Bouba

"How do you deal with all of it?" is the question I am often asked. Here is how I approached living with a chronic heart condition, from the inside out.

1. It Is Not Going Away

"Here is the thing," I'd think to myself, "You've got a chronic illness, a non-communicable disease (NCD). It is not going away. It is here with you for the rest of your life."

NCDs are diseases of long duration with generally slow progression. They are by far the leading cause of death in the world. They force many people into or entrench them in poverty due to catastrophic expenditures for their treatment. Even with access to the best care and technology, the patient and their family would have to play a significant role in this process.

It starts with taking charge of leading and managing the situation. This would be a life-long process including daily management of stress, pain, energy levels, and focus.

2. Don't Fight Your Condition; Embrace It

Soon after my diagnosis, I realized that the illness is part of me and that I needed to be aware of it and accept it. Rather than resisting an illness that is not going away, it would be better to just embrace it.

By the sixth week after the diagnosis, I was much calmer, more serene, and was starting to embrace my illness. I was "trapped by my life, my life with the illness. So, at that point, my choice was to continue to swim or to be drowned." Either way, I was "already wet."

"At first, I endured some confusion and some soul-searching. I went from facing imminent death, questioning God, to trying to understand why it was me who had to live with this condition. Then, my righteous side would chirp in, 'why not you?' 'How fortunate you are!'"

Getting to the answers early on was essential. Thereafter, every day I'd make a choice to live fully and to go on. Every day, I'd wake up and choose to be a husband, a dad, a son, a brother, a friend, an engineer, or simply to contribute to others and to society as much as I could.

3. Research and Support

During the confusion phase, I dwelled on researching cardiomyopathy and heart conditions. I regularly exchanged with my cardiologist in South Africa. I went for psychotherapy sessions. I also received great support at work, from my family, and my partner (who would become my Lovely Wife).

As much as others could do for me, I still had to do my part as well. People with chronic illnesses have to dig deeper within themselves for excuses to do the right things daily, both for ourselves and our dear ones.

4. Live Life, Keep Busy, Keep Pursuing Happiness

"Live life, keep busy, keep pursuing happiness" was my mantra. It was important for me to not let the illness take away my joy and happiness. The process made me understand that happiness and illness are not actually exclusive. For, if anything, illness would actually exemplify my sense of fulfillment.

"Happiness and illness are not actually exclusive. If anything, illness would actually exemplify my sense of fulfillment."

Then, I put together a plan to deal with my condition. Although the plan has evolved a lot over the years, I strongly believe that it plays an important role in my continued quest for joy and happiness whilst dealing with my illness.

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