Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

23. Mar, 2022

Working with Symptoms - Sickle Cell Trait

Working At A Young Age

For as long as I can remember, I have always worked.

Be it the usual 9 to 5 type work, whether manual labour, like when I worked for a warehouse doing mail distribution, or in administration which is initially what I trained in at college.

Ultimately the majority of my working life has been office based, such as when I worked within the Police, Education and National Health Services.

My working life has been great, except I would always feel fatigued really easily and my sickness absence record has been exceptionally poor!

I did, however start working at such a young age. I recall that as a young child of around 8 years old, I decided that I wanted to sell something to my local church members. I didn't know why, but I began making plaster-of-paris dinosaurs, just your regular kid doing something creative, as that was my thing, painting them in the ugliest of colours for the mantle piece of whoever was lucky enough to buy them and then sell them.

My goal was to raise money for an orphanage called ARM and for the life of me, I can't remember what that stands for. Then I sold bookmarks, homemade. I cut out used cards and stuck them to rectangle book mark shaped cardboard, wrote sweet messages on them with glitter glue pens and decorated them, albeit a little over the top, but I loved helping people! I always have and always will!

I Was Good At Work and I Love People

I guess I have my mother's heart like that! She's a people lover, not people pleaser, but a lover of people and one who truly cares, even when she seems apparently hard. She's direct and straight forward and you can read her emotions on her face easily and when she doesn't approve of something, boy you'll know it and if you happen to be her child or grandchild, then you never hear the end of it! Hahaha

So working was what I did and what I loved and what I honestly was good at!

My mum instilled the ethos of "Do everything as unto God and you'll go far in work!" So this I did!

If only I knew to not overdo it over the years! Say like starting super early and then still finishing much later than I should, then coming home and helping with cooking and cleaning, because I am a bit of a workaholic like that. Working and being busy makes me happy, whether at work or house work or even in my family life. I tend to be quite positive anyways, but having that sense of purpose, really....I guess, gives my life meaning! So long as I'm doing something to make a positive impact in other's lives, that gives me joy!

Sickle Cell Trait and My Working Life - It's Never Been Benign For Me!

What I've realised is that living with sickle cell trait, is not benign and it never has been. Although in some it may be silent! Yet in my lived experience multiple times, it has been a silent fiend, almost deadly on many occasions, causing simple infections to last longer than they would in a normal person, without this genetic inheritance, causing me to have many instances where I was off sick for a lot longer than I should be and therefore impacting my working life tremendously.

Everything was affected by my sickle cell trait status!

Everything work related!

I also knew at a young age, that I would not always work for someone else. I mean who wants to really work for a boss? That's at least not my idea of fun! Imagine, me being told what to do, what to say, how to act, when I could go for lunch!
Not me, at least not forever, was always in the back of my mind, when I did have basic jobs.

I did have those roles though of working in positions which I absolutely loved, they loved me too and I thrived, until my body collapsed from exhaustion, because I was running my own business on the side and working a regular clinical laboratory job too, but I couldn't take it! I was also looking after my mum when I collapsed in 2017 and things took a turn for the worse. One day, whilst I was off sick after the final episode of collapse within a work environment, I woke up and I just couldn't get up! Thankfully working in hospital surrounded by doctors, has it's perks. They said I was exhausted, so sent me home. Off I went and then.....

....Ugh oh!!!!

My head and shoulders were the only things I could lift off the bed and my niece who was 8 years old at the time was sitting up next to me, screaming I grabbed onto her for dear life, in the hopes that I would somehow manage to lift myself up off the bed. Nothing changed! I couldn't move the lower half of my body and my mum had to come rescue me instead.

Losing My Business Was Hard - Losing My Mobility Was Harder!

I did go on and work during the latter half of the year, after months of not being able to walk properly, to get up from my bed, to use the bathroom myself and as a recently two year's in, self-employed Holistic Massage and Wellbeing Therapist and Non-Surgical Aesthetics Technician, well that wasn't too good for business, as you can imagine!

I worked for years since and now in 2022, I find myself unemployed, after my final sickness management hearing, (they were great, support-wise for over a year, but I exhausted the sickness absence management policy, with being so unwell and couldn't specify a return date, so I was dismissed, for the first time ever), but now not without reason and definitely not without purpose!

My purpose now, if you've been following my journey over the past two years, is one of great pain, severe trauma and a close encounter with death, but here I am trying to find my own place of balance in life, searching for new ways to not only help myself, but to serve others through my story or stories, as I have many.

I find myself now at peace, not always able to accomplish major feats in the general sense, but then I can't talk in general, I'm talking about my feats and each small victory I encounter leads me on to newer ones. So I am resting and coming to terms with the most recent experiences, which have been crushing and life changing and seeing the way things are, but I'm also working, in my own sense of the word.

So, Work Looks A Bit Different Now.....

I am using my voice to be a voice, for those who are still voiceless! Those of us with sickle cell trait, who aren't acknowledged, heard or treated, who aren't confident in speaking out to our own communities, for fear of stigma or disbelief, let alone accessing medical help, because our own GP's and haematology specialists often shun and ignore and sometimes (rather the majority of the time), gaslight us and make us wish for a fate such as death!

Because at times, sickle cell trait has made me wish for the comfort in death, the rest in my body, not having to fight even when I have no fight left physically, mentally and emotionally!

So now, I am grateful that through my life's journeys with my symptomatic sickle cell trait status, I am no longer working for anyone else, but I define my own work. I can rest when I need to, I certainly don't feel guilty for not accomplishing a single task I promised myself to do, (or maybe just a little bit), but I'm not judged by deadlines which I've missed (the judgement I inflict upon myself I can deal with), nor having to write, when my arm is swollen or in agony.

I can enjoy spending the day healing or aiming for a little extra movement, as my mobility has been greatly impaired too! I can enjoy mine and my brother's pets and the joy they bring just by being themselves! As a non-animal in the house fan before (I loved them from a distance), I realise just how wrong I was, they are so loving and extremely therapeutic! They have their own little personalities and their own strong characters and boy they play and rest and eat and drink and they love pleasing us as their owners and it has taught me so much about my own life!

That's what I am now spending my time doing, I am trying to cook when my arm permits, but I don't always manage to, as it at times feels like my arm is not on my own body and the pain it causes radiates right through me.

I write though, as a creative writer, I find myself getting lost in thought and when I can't write physically, (I type as I can't actually hold pens for longer than a few minutes anymore, I don't have a good grip function still), I dictate! My goal is create more books. To just immerse myself in writing telling the most beautiful stories that I can of pain, but of triumph, of joy and sometimes sadness, to write of laughter and of passing tears, because that's the beauty of life with it's many ups and downs! I have always loved rollercoasters, though real life feels a bit wilder and is so unpredictable with it's many gut wrenching twists and turns!

Now, work doesn't feel like work and I love it! I am adjusting and managing to cope, sometimes more than others. At times even dressing feels like work because of pain and exertion when my oxygen levels or blood pressure causes such bad, nauseating headaches, (this has been daily for the past over 8 months now). So at times I bathe and dress up good, just to get back into bed. That is still work to me!

Work does feel different now and obviously looks much different to how it used to be, but I can honestly say I'd rather work for myself anyday with managing my progressively worsened sickle cell trait symptoms and the complications it has caused, but I can do it now with a genuine smile on my face!

Reach out.....I'd Love To Hear From You!

If you find you are struggling with being a symptomatic carrier of sickle cell trait, then let me know. I'd love to connect and hear your story!

Also if you want to know more about my story, then grab your copy of my book "Symptomatic: Life of A Sickle Cell Carrier: An Invisible Disability - My Story" here!

Blessings and love x