For months, I researched, read, and absorbed posts, articles, and blogs from men and women with Sickle Cell Disease (SCD). Enthralled, I looked on, as simultaneously, they told their stories, and spread awareness about SCD, determined to continue fighting this cruel disease. I saw posts, blogs, and videos that showed them fighting their deadly disease, but still managed to live a fun and fulfilled life, filled with love, joy, success, with friends, family, and children, closely and lovingly embracing them. These determined, sickle men and women, rightly classify themselves as Sickle Cell Warriors, and promised to fight their disease with determination, strength, and courage; as well as continuously striving to spread awareness to the world, until the last breath leaves their bodies.
This is not such a blog. I am not a Sickle Cell Warrior. I have never felt like such. I am strong because I have to be. I’m not sure if that’s a real strength, as I haven’t chosen to be strong. I have no alternative. Fight or die? What would you choose?
However, the one thing we do have in common is that, I will fight to bring a change to the world. I will fight to bring comfort and understanding to my fellow sickle brothers and sisters. I, too, have a story to tell, so, take a trip with me to see how I got to the place that I am today…..
For as long as I can remember, I have always known that I had Sickle Cell. I don’t recall a time when I was sat down and told that I had a genetic, lifelong disease, or that I had to take medication for the rest of my life; or told that I had to be careful of what I could or could not do; or any of the things that you would imagine telling someone, who was suffering from a serious, lifelong disease, that would affect all areas of your life.
Sickle has always been a part of my life. It is (as much as I hate it), a big part of my identity – part of who I am, whether I liked it or not. This deadly disease has claimed me. It didn’t ask for my permission. It simply stormed through my doors, knocking down the walls, screaming for my attention, and changing the way I see and experience life. It demands that I look it squarely in its eyes and face it head-on. Defying it means that its deathly grip around my body will get tighter, and it will drag me through, what we all call, life!
With this in mind, I have always mustered as much strength and courage that my mind could take, and faced the never-ending duties of hospital appointments, medical check-ups, treatments, blood transfusions, needles; and subconsciously impatiently allowed specialist doctors and nurses’ prodding, poking, turning, examining, questioning and head-scratching with a plastic smile slapped across my face. Outwardly, I seemed strong-willed and personable, but on the inside, I was throwing off the blue hospital blankets, running bare feet out of the swinging hospital doors, down the stairs and out of the hospital gates, feeling the fresh air whipping me sharply against my skin. However, as sickle doctors asked me yet another question, my mind snapped me from my elusive daydream straight back into reality, and with an aching pain in my bones, I did my best to grin through the pain and answer the doctors’ never-ending questions through deep shallow breaths.
For the majority of my life, I have lived on a hamster wheel (simply making the best of a dire situation), and persistently hidden a cruel, chronic, lifelong condition called SCD. My mind has always screamed at me: “you are the same as everybody else…don’t let them treat you differently…you are not different!” Hiding my disease from friends, boyfriends, colleagues, and acquaintances, has not been difficult – after all, it is an invisible disease, and being a private person (a recluse at times), made it even easier to keep people, even loved ones, at bay.
Despite it all, for most of my time in this world, I have managed to live a relatively normal life. With the help of blood transfusions and life-extending medications and treatment, I lived on borrowed time, relying on them to keep me alive, day-to-day, month-to-month, and year-to-year. However, living a much more impoverished life than my peers has seen me grieving for the person that I could have been, and the life that I could have had, if it had not been for the existence of this cruel disease, that has cunningly and ultimately claimed me.
My hidden disease continues to silently torture me as my body screams out for oxygen that my misshapen red blood cells struggle to provide. My joints slowly and painfully erode under the pressure of numerous and excruciating pain crises. On days out with friends, strolling down the high street, my abnormal lungs scream at me, begging me to stop, when I have walked for more than two minutes. Friends and family complain at my tortoise pace. I smile a knowing smile, hiding the real reason behind my baby steps and say: “I’m so unfit…Let’s get the bus or the tube or something….I hate walking..” Diverting the blame onto my “so-called laziness” is a socially accepted way of explaining my sloth-like behaviour. It prevents me from having an awkward conversation, explaining that I have abnormal lungs, and simple activities that others take for granted, is something that I have to continuously and persistently fight my way through.
Despite this, I ignored my limitations and pushed my boundaries both mentally and physically to do what I wanted to do, adamant that I would not accept being treated differently but what I have come to realise is that I am different – this is something that only really became apparent, just three long years ago.
From 2017, my life as I knew it, came crashing to a halt, and my life reverted to my childhood years of pain, suffering, a vast increase in medical appointments, seeing a never-ending changing supply of specialist doctors and nurses, and my local hospital becoming my second home. I lived constantly on the brink of fear that every tinge felt in my body would lead to a pain crisis and that my next crisis would be my last one. Reoccurring thoughts that the life that I had been desperately clinging onto for all these years would slip away from me in just a few weeks, months, or a couple of years if I was lucky. This fear pathed the way for low moods while depression and anxiety quickly gripped my mind and the inability to make plans due to daily, crippling pain and restricted movements felt like I was no longer living, but instead simply waiting to die. I no longer understood what I was fighting for. I no longer remembered what the point was for all the medical appointments and treatments that I was having. Days and weeks went by and I performed my daily activities and tasks in a daze, struggling to get out of bed in the morning and struggling to find a reason to continue in this world.
I had always taken pride in the fact that I was independent and self-sufficient, but this is no longer an adjective that I can use to describe myself. After eight years of being a Special Educational Needs Teacher and then being headhunted for an Academic Manager role in a micro organisation in West London, I became eager for the daily challenges that faced me. However, when my health rapidly deteriorated and chronic pain in my knees, hip, and lower back ensued, I was once again hospitalised, this time for a month and when I was finally discharged, nothing was the same again.
Due to chronic pain that I was now dealing with daily, and an increasing number of medical appointments seeing specialist healthcare professionals, I was unable to work full-time once again. However, when my employers refused to let me return to work on a part-time basis, I was forced to resign from the job and abandon colleagues that I loved greatly. Faced with unemployment and rent to pay for my beloved, one-bed Kennington Oval flat, I scrambled for help from every avenue that I could think of. However, when every corner that I turned to came up short, I realised that I was unable to do this alone any longer – my whole world had been turned upside down. It took months for me to come to terms with the chronic pain that I faced daily, the increasing number of controlled medication that I was on, unemployment due to medical reasons, the decline of my mental health, a relationship breakdown, and a flat that I was forced to give up.
Feeling isolated and worthless, I searched for solace around me. Remembering all those Sundays that I was forced to wear my Sunday-best and go to the local Methodist Church with my dad and my brother as a child, I joined the local Church of England Church in Oval, just minutes from my home. There, I joined the weekly choir and monthly prayer meetings and met like-minded people and built my trust in God. However, as I had done with everyone else before, I hid the pain and frustration of my hidden disease with members of the congregation that I built relationships with. However, it was by making these connections at Church and building my relationship with God, that kept me fighting to remain in this world.
As I moved back to the family home, I struggled to lift the depression from my mind. I looked around me and attempted conversations with my sister, my dad, my friends on the frustrations that I felt…about the dark cloud hanging over me…about my fears of imminent death. I looked into their eyes and saw blank faces looking back at me. Words painting a silver lining around my fears and frustrations burst my eardrums, “at least you’re not in the hospital,” “you can still do what you want to do,” “there are people worse off than you.” Screams filled my mind as I rubbed my head in frustration, wondering what words I could use to make them hear my words or my feelings stick in their minds…thinking of what phrases to use, for it to resonate in their hearts…pondering about what actions to do, to make them see me, notice me, acknowledge me, understand me. I am still wondering, still thinking, still pondering but I’m not convinced that these answers will ever come to me.
As the months went on, my mind continued to spin out of control and I struggled to gain control of my life. I struggled with healthcare professionals at the Haematology Department at Kings College Hospital that had been monitoring my disease since I was a child. Tired of not being listened to, lack of communication about my treatment as an inpatient, the lack of decision-making regarding the increasing number of symptoms that my disease was producing; I finally asked my GP to refer me to another hospital, where I could receive treatment. This referral landed me under the care of Guys and St Thomas’ Hospital.
Determined to take control of my life, I questioned the meaning of life and what would make me happy. Struggling to make decisions about any small steps that I could take to make my life more bearable, due to hamster wheel of pain, hospitalisation and recovery, – all my previous passions in my life could no longer be fulfilled. I feared (and still fear) that these are my final weeks/months/years, and my fear of dying with regret or dying on terms that are not my own, filled me with dread. So, I decided to face my fear of imminent death and take the control back in my hands. Doing this, I began to put in place my “End of Life” (EOL) Plan – what I wanted to do/happen if I go into a coma or am near death; who I want to be contacted; and where I want to die. I started having conversations with healthcare professionals to ensure my EOL would be implemented if I am unable to communicate my views and demands. Preparing this plan helped to clear the dark cloud from my mind. I slowly started to feel there was a point to this fight, a point to the pain, suffering, and frustration that I am feeling.
Determined to continue gaining control of my life, I did something that I have never done before. I took the reins of life in my own hands and…..I spoke up. I started this blog. I told the world that I have Sickle Cell Disease. I started the fight to spread awareness about SCD. I started the fight to bring equality and understanding to all those who have the unfortunate task of living with SCD. I started the fight to get better treatment for sickle cell sufferers within the NHS by those who are supposed to understand the disease the most. I started the fight to feel less isolated, less worthless, less frustrated, and more understood. And whether you know me personally or not, if you’re reading this, I hope you stand with me. Most of all, I hope you hear me.
Peace and Love X