More often than not, we associate illnesses and diseases with things we can see. It is for this reason that things like mental health issues are swept under the carpet – because they’re not easily seen. BN reader, Nike Rokosou* has been living with a condition which causes her immense physical and emotional pain. She shares her experience on living with an invisible illness. We hope this narration will help someone who feels alone or dejected having to live with a medical condition that isn’t apparent – but not any less hurting.
I first felt the blinding pain in April 1995. I was 11 years old and thought that I had overeaten and had to spend the whole day in the bathroom. I had visited a relative the previous day who plied me with so many goodies that I kept munching happily. My Mum, aunties and siblings gave me grief, “You eat too much”, “You don’t know how to say “no” when offered food” and so on. Little did I know that it was just the beginning of so many years of what I just discovered is called ‘invisible illness’ or ‘invisible disability’.
Invisible illnesses are illnesses that are not immediately apparent and many not manifest visually and as such sufferers are not obviously ill or disabled. These are chronic illnesses that significantly impact on and interfere with activities of daily living. For those who suffer this there is no end to hearing, “But you look so good!”, “You don’t even look ill.”, “You’re so lazy.”, “Aren’t you feeling better yet?”, “I thought you went to the hospital yesterday.”; the comments are endless. Unfortunately, we judge others by what we see and as a result people tend to be less empathetic to illness that is not readily seen.
Growing up I thought the chronic pain I felt was normal, to be expected and assumed that everyone around me lived with some form of pain or the other though in varying degrees. You see, I have always had heavy and painful menstrual periods (menorrhagia) that have always been perceived by society as ‘normal’. I was told I was being unnecessarily fussy or wanted to beg off household chores if I complained about being ill.
The day I realized I had had enough was when in my head I found myself describing the pain I felt as ‘debilitating’. I decided at that moment that it was time to look for a solution to my suffering. By this time I had lived with the pain for 17 years. Previously to manage the chronic pain I took pills (but only when it became so unbearable), put my game face on and tried not to over exert myself whenever the pain came. I channeled all my energy during periods of pain towards my work; I didn’t want my career to suffer. On the other hand, my home life suffered; I am only able to do the barest minimum of chores and conserve my energy for the next day at work.
My social life suffers; I am always the first to get tired, and eager to go home at any outing with family and friends and I always back out off any strenuous activity or task. For the most part I look healthy, and it is understandable that the reality of the illness is difficult for others to acknowledge and understand. I didn’t realize how bad the menorrhagia was until I landed in the hospital for a surgery this time last year.
Two incidents readily come to mind, which made me understand how much pain I endure. Prior to the surgery I kept worrying about the pain of the surgeon’s knife. I shouldn’t have been because I barely felt any post surgery pain which amazed the nurses; in fact I refused pain killers after the second day because they made me feel groggy all the time and I wanted to gist along with my numerous visitors (I love gist and my hospital room was always filled with visitors). Secondly, my doctors came round to my room and asked me how I coped with going to school and work with all the pain and illness. At this point my mother burst into tears because she herself didn’t realize the extent of the pain.
Invisible illnesses may present with many different symptoms such as debilitating pain, fatigue , dizziness and weakness to mention a few. Other examples include depression, mental illness, cancer, allergies and neurological diseases; the list is endless.
One of my main concerns is how my experience affects those around me. I constantly feel guilty and a sense of fear of being judged. I have found that I apologize a lot more than I used to; for being unable to help or give a hand, for being the ‘party pooper’, for reduced communication with friends and family. I have to filter what part I share or disclose with people particularly in romantic relationships. It is difficult striking a balance between presenting myself as the ‘sick person’ or the ‘healthy person’. As the ‘healthy person’ it is difficult to get people to understand the extent of the conditions and the limitations it presents. On the other hand, being known as the ‘sick person’ comes with the stigma of weakness and pity that is unpleasant.
I have my good days. Those are days where I feel minimal or no pain at all. In fact, there was one day I felt different right from when I woke up and I was unable to place a finger on what was wrong. I realized just as I was about to go to bed that that was the first day in a very long time when I felt no pain! On my pain free days I am happy, excited and want to cram in so many activities into 24 hours; who knows when the next pain-free day will come. On these days I realize I want to live, I don’t want to merely exist but live life and live life abundantly. I want to be able to get up every day and do what I want; from cleaning my room, to cooking, to hanging out with my friends without having to mentally calculate what I can do before I exhaust all my energy.
I speak for sufferers of invisible illnesses when I say categorically that we don’t want pity. All we want is understanding and some allowances without being judged.
*Not her real name
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