A lonely Existence

Behcets Loneliness
Behcets Loneliness

The summer holidays began in early July, and my children have been home from school since then. We got a chance to travel to the coast of Kenya together with some friends and their children. It has been a fantastic holiday! For a long time now, my husband and I have dreamt of taking our children for a holiday, but it has been impossible because of financial strain caused by my health needs and the unpredictability of my condition as well. Somehow, this holiday, all the stars aligned and we were able to make it to Malindi. We all had a great time! I especially enjoyed seeing my children have fun in the ocean with their friends, not to mention the waves that we enjoyed together. All in all, it is a summer full of wonderful memories.

However, I could not help recollecting and contemplating about everything that has happened this year since January. I am just coming out of a previous flare-up that has lasted a year, and it has taught me that this road of chronic illness that we are on with my husband and children is a lonely one. I have never been the kind of person that finds it easy to admit that I am feeling handicapped by pain or illness. This past year however, I decided to give people in my life a chance by really explaining what is wrong with me and how I am truly feeling. The reason for that decision was that I was hoping to truly make a lasting connection with at least one person who would truly understand how life for me is like, so that if I do not show up as often as I should, they would understand why.

Sadly, it turned out to be a fool’s errand. At the end of the day, people think you are self-pitying and that if you really tried, you could live a normal life. When people ask, “how are you feeling today?” and you say, “not well”, they do not want to hear it. Because, that is always the answer. And somewhere along the way, even your closest friends begin to think that you must be pretending. You certainly cannot be sick all the time! You must be looking to enjoy the perks of sitting around and resting! While the truth is that there is no resting! With chronic illness, you are always sick! Your diseases do not take a sabbatical! Every day is you sitting around trying to persevere so many discomforts while wishing you could walk a minute in their shoes and just do stuff! Wishing you could be sick from something that ends!

What I have learnt is, no one really understands. Not family. Not friends. my husband and children seem to understand, I guess because we live this together every day. So, the next time someone asks, how are you feeling? From now on my answer will be, “I’m fine.”

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