Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

4. Jan, 2022

Mental Health and Sickle Cell Trait - How I coped and how I am coping now!

Opening Up and Breaking the Silence!

So I never used to be so open about the mental health aspect of my sickle cell trait carrier status before, but I am an open book literally now.
What did it really mean to be classified as a symptomatic carrier of sickle cell trait?
Would anyone even believe me if I spoke out?
Would anyone even really care?


Why Many of Us with Sickle Cell Trait Stay Silent within the Sickled Community

I know from joining forums previously, which specifically catered for those who have Sickle Cell Anaemia or at least they have the privilege of having a full blown Sickle Cell Disorder/Disease (SCD) diagnosis before, (as there are many forms of Sickle Cell Disorder/Disease), but I won't go into that here and now), that if I tried to say something in relation to having Sickle Cell Trait, I was shunned.

I very often got the occasional "Oh I'm so sorry you're in pain!" or another one...."Are you sure you just have the Trait?" Or yet another one, "Perhaps you need to get tested and be given an official diagnosis!" Imagine how that made me feel? My diagnosis is Haemoglobin AS (aka SICKLE CELL TRAIT) or I am a symptomatic carrier of sickle cell trait!

Come on, like I am a 37 year old (now), but at the time of going through the worst crisis of my life, I was 35 and I had known my status for as long as I could remember, after suffering my whole life since age 5 with symptoms such as those with the full blown disease. I'd pushed for the relevant tests, yet been disregarded when I inquired as to what my full blood count was, when I was so sick and those who I turned to within the community instead of hearing and listening to me, instead questioned me!

Something many within the sickled community understand and know all too well! Medics seem to be classified as medically gaslighting them or being negligent or even racist in some cases, if there are certain things they do not know. However, we the wider sickle cell community totally ignore and disregarded our own fellow warrior's pleas for support, help and for an opportunity to be heard, just because they are deemed 'benign' or 'healthy asymptomatic carriers' of this debilitating disease!

I feel that's not fair to a whole group of people, after myself experiencing the worst crisis of my entire life, we all seem to have found out, exist and are scattered globally - the one common denominator - we are all symptomatic carriers of sickle cell trait. There is no other word for this ignorance and silencing of another's pain, except for poor medical research!

Let me just pause right here though, as this post is not to bash my fellow Sickle Cell Warriors, but rather to reflect upon and highlight my journey and state what it is that I went through at the time I was going through such a severe sickle cell trait crisis!

Kudos and a massive Thank you to my fellow warriors with full blown sickle cell who listened to actually hear and acknowledged that my pain was similar, if not the same as theirs! I'm forever grateful to you! (Y'all know who you are)!



Speaking Out Has Liberated Me and Given Me a Platform to Help Others

To be honest it appears the more I speak out now, the more people do listen, because you cannot make stuff like this up! It's certainly not in my head and it's opened a door that I can never go back and shut now, because this is really deep, personal luggage I've carried around internally for years!

Dealing with the emotional and mental struggles that having any invisible disability causes is enough to drive anyone insane and at times, I find myself questioning whether I'm still even sane!

I am glad that with the opening up so widely, came a release and a birthing of my book of poetry which I started a very long time ago, at the age of eight in my mums huge kitchen, whilst sat at the family table being creative 'Lyrical Imagery: Poetry, Short Stories and Prayers for Everyday Life' and my writing my own story, 'Symptomatic: Life of A Sickle Cell Carrier: An Invisible Disability - My Story' validating myself through my experiences that no one can ever take away from me, because I am confident in what I have gone through, plus I am an evidenced based laboratory practitioner, so everything I have gone through is well documented and I have photographic evidence also.

I've not let them take away from who I am, because I'm a fighter, as we all are, the ones of us living with Sickle Cell in any form, whether a carrier or carer or someone diagnosed as having the full blown condition. That goes without question! The strength of sickle cell warriors is beyond anything I have ever known and I've experienced other types of pain, away from and because of sickle cell trait, so my pain threshold is high! I can tolerate a lot, but I shouldn't have had to!
Yet, these experiences have caused me to change drastically this year, because I'm no longer the same person. Inside, I'm more resilient, stronger, better than I was and although I have many ongoing physical challenges, (ongoing stroke symptoms and extreme fatigue whereby I'm having a full on conversation with someone and the next moment, I'm fast asleep and talking only in conversations and riddles I don't even understand, let alone my mum who is the one I mostly am face to face with who ends up frustrated because I'm speaking to her and end up talking mumbo jumbo about something totally unrelated, accompanied with these lower than safe oxygen levels continuing), amongst much, much milder pain crisis and living with chronic pain.

Yes I'm all the above in character, but I've also been fighting with social anxiety, due to not letting people see me in pain. I hate looking unwell, fatigued or even if I don't look that bad, I hate people knowing how bad I truly feel. My coping mechanism before would have been to close off to the ones who truly care about me and what I'm going through. I would so easily have become a hermit and dealt with it all on my own. Something I'm very used to doing, but somehow this time is different!

I don't know why!

´╗┐Inside it was like I snapped!

A lightbulb went on and I wanted to take back control of even how difficult it was going to be mentally ahead!

I didn't know that what turned out to be me sharing on social media my experience with sickle cell trait, would eventually save my life and give me an even greater purpose and a reason to continue this fight!

My writing and opening up was what birthed new life, inspite and despite the pain! Mind you, it's taken me a full year and a half of talking about it, grieving, crying in the darkness, where no one can see, re-living the traumas of suffering a stroke, both in flashbacks and with ongoing symptoms, regardless of it being a mini one or not, I still lost function of part of my body. Not a major part, if you consider I can still use my arm, but parts of that arm are weak and not functioning as they should and my mind has been much slower to process and focus on even one task.

The anger I felt and the emotions I cannot even begin to put into words that were there. I decided that I've come through the worst parts of this mental hell hole and now in my way of finding a healthier way of coping better, to speak about the bad, but to magnify the good. And boy has there been much good!

I've accomplished writing and published two books in one year. I had always wanted to do that, I just never thought that my break in creative writing, would come through personal pain in such a desperate way! I shouldn't be alive, thus I wanted to leave something others like me, who are and were suffering in silence could find and utilise to help them get the medical attention they needed! Little did I know this would become something I can use to help myself too! Writing a journal has always been therapeutic for me, but this year I couldn't write. Typing was painful too, so it was little and often. With my poetry, at least I've had them written for years, it was just a matter of organising, a skill I used to be proud of. Now I'm even mores proud of myself, because it took months of re-reading the same thing, because I'd fall asleep reading or get blinded by the pounding headaches or head pains that I've had ever since my initial stroke and before, but for want of an exact timescale for when the symptoms got that bad, December 2020, where I was hospitalised for 9 days having all sorts of tests done which proved the whole limb weakness and reduced muscle function on the right side. My first book was birthed through the pains and through my need of medical attention my body so required, having documentation of what I'd gone through has helped me fight my case with my medical team, the ones who are listening. Haematology is another story for another day, as the haematologist I'd dealt with I found to be quite ignorant and quite slack, despite being classified as the best in the whole of Yorkshire and the Humber. My poetry book, was put together through desperation and in reflection of my healing journey, I needed to pen down how I felt, thus getting out my innermost frustrations, pain and traumas and finding a way to deal and heal!

I'm so beyond grateful to God also, because without His grace keeping me through this very testing time, I wouldn't have even been able to share this with you! So now, the new year 2022 is here and I want to share that I'll be writing a whole lot more, or rather dictating, as I've had to do so this year gone, because as I said writing has been somewhat of a physical challenge.

I'll be dressing up even when I feel rough, despite the pain, I'm determined to find a way to make it through the rain clouds and finding ways to thrive again!

Good mental health for me, includes feeling good about myself. I haven't felt that great in such a long time, that I just had to make a choice about how I continue on. I mean do I continue looking so rough, just because I feel it? Or is there a way to boost myself up mentally and in so doing, cause something to shift in my brain and aid myself in physical recovery? Maybe I won't ever feel physically better, maybe this is my new norm and if so, I want to look good and live the best way that I can despite how awful I may be feeling inside and show up for none other than myself! I can control that at least and even if it means I'm dressed up, not that I'm going anywhere physically, at least I can feel smart and if I have to get into bed looking all fly, well so be it! I refuse to let myself get dragged down by my own poor mental state any longer.

This may be something that I have to continue reminding myself of from time to time, just because no one is perfect and one can't be expected to be super positive when things just aren't looking or feeling too great right?

Anyways my point is, I'm aiming to deal with my emotions through a positive outlet and allow myself to express myself as freely as I need to during this new year! I hope this proves insightful and allows others a safe space to also heal no matter what you're going through!

Oh and if you purchase a copy of my book/s, via the links above, I hope they bless you and aid in your medical, spiritual, emotional healing and reflective journey too.

´╗┐Don't forget to write me a review and do get in touch with me to let me know how you're getting on!

Blessings and love!

Mwape.