By Blessing Dada
Most people that I meet in friendships or that come across me, would say that I’m not really your average gal… and in some areas of my life, maybe this is true. But I guess I’ll give all an idea of who I am.
I am Afro-Irish Christian Feminist, born and raised in Dublin, Ireland with African ethnicity (Nigeria). I think that one of the things that would make me stand out especially is that I’ve always a special place in my heart on advocating for mental health awareness. I became an ambassador for Brighter Thoughts Ireland and through my personal experiences of struggling myself issues in my life.
In African culture, people have a different perspective and interpretation of the term ‘mental health’. In the African community; family, community and spiritual beliefs tend to be great sources of strength and support. However, Africans rely especially on faith, family and social communities for emotional support rather than turning to health care professionals, even though medical or therapeutic treatment may be necessary. Faith and spirituality can help in the recovery process but should not be the only option you pursue. It is well-known that ethnic communities may not share Western conceptualisation or use Western language about mental health. But that’s where I come in; to try break this particular stigma and shed as a black person, a person of ethnic background, to highlight that mental health struggles do not discriminate any gender, religion or especially race.
Ever since I was a little kid, I’ve always have a deep sense of admiration of sports. Growing up, all I had ever known was pain, due to personal (and still ongoing) issues at home and through a relentless 12 years of bullying, playing sports was my safe haven; it was a distraction, where I felt I was in control of what was happening in my mind and in my surroundings, just like I was in control of the football and it was somewhere that if I did get injured, at least that type of pain was temporary and not on purpose. I was a little below average when it came to academics, but I was a very talented athlete, playing for teams in sports such as Cross-Country and Sprints and winning every race in school and outside. Sports Day was my favourite day of the year as a kid, even more than Christmas Day in fact. There was one particular teacher who noticed me besides my academics and took upon himself to train me in his spare time at weekends. It was there that it clicked with me: I wanted to be like him and do what he did for me. He helped me on my journey, with no idea of what I was going through at home and school and I thank him (God rest his soul) for that.
By the time that I started secondary school, I was playing about seven different sports. With particular attention from my coaches in Basketball, Gaelic Football and Soccer. In 2014/2015, I was due to sit my Junior Cert. There was an excitement as I began to think about possible career paths, I wanted to do something that would genuinely fulfil my heart to make myself happy and simultaneously help others. I remembered starting with my exciting researches on Careers Portal and CAO booklets for other careers/courses to add to my Dream Course/Careers list. There was a few on that list but in my heart, tI wanted to become a member of the Gardai Siochana and/or a Sports Coach. Well, I wish to say that this is still the case. And I’m still trying to hold on to one or the other or both. But it is all looking very weary now. All that came crashing down… I still look like your “normal “average person…right?
I might look healthy, but looks can be deceiving.
For the past four years, there’s something that I've been struggling with. I suffer from chronic illnesses called Fibromyalgia and Chronic Fatigue Syndrome.
In December 2014, just 2 months after I turned 15, it was time for the usual dreaded B word. Yes, remember Beep Tests? Trying to frantically, but strategically reach the end of the P.E hall before the next beep. Not that I was dreading it, I usually did well in them, getting an average of 7.5 with 8.9 as my highest. But on that day was when my physical health changed forever.
I remember feeling so tired. Which was unusual, because I was never tired. But that day, I had this dull aching feeling all over my body, but I
tried to shake it off. It was my turn for the test. I all of a sudden get this very sharp pain in my knees downwards. I tried to complete the test. But I ended up dropping out at 4.5. I was in shock and so was my P.E teacher at the time. Afterwards, that’s where this reality nightmare all begins. She tells me to maybe change my diet, pop some paracetamol and I’ll feel better in no time.
That "feel better in no time" never happened. I began to struggle, as the pain came and went for the first few months. I was seen by different doctors in Temple Street Children’s Hospital and GPs. I had blood tests and MRI scans. Answers to what was wrong ranged from growing pains to lack of iron. All the tests came back normal.
On paper, I was healthy. People rarely noticed the pain medication I took before basketball games, or the times I’d slip away in the middle of a school day to the oratory room in my school.
Frustrating as it was, I eventually did my own research and came across the word Fibromyalgia. It matched all my symptoms. But I kept this to myself in fear of being criticized for researching illnesses on Google. I confided in no one except someone in my church, who also had fibromyalgia. I began to drop out of sports one by one, until I no longer played. I tried so hard. The pain progressed over the years into 5th and Leaving Cert year and eventually never went away. It started from my legs and the pain is everywhere now.
I struggled throughout my last years of secondary school, because no one knew what Fibromyalgia was, no one understood the idea that you can be invisibly ill. There was no support for me, especially during my Leaving Cert…and even worse, people saw me as attention-seeking. What hurt the most was that the majority didn’t even come from the students themselves, it came from the people you were supposed to trust in authority.
I’ve always struggled with depression, but this intensified my feelings. I had already attempted suicide at 14 and, intrusive thoughts became part of my life since. I still mourn my old self from time to time I have already struggled with friendships and have always though what was wrong with me. But this invisible illness gave more reason to lose people I thought were my friends. At least there was a reason to, this time, there is something wrong with me now.
During my first trip to the hospital, doctors said I was probably still experiencing “spasm-y feelings” from sports injury. I knew what sports injury felt like and this was a whole different pain. Four days later, I was back in the hospital. Those spasms morphed into full-body sensitivity, concentrated in my legs and throughout my back. Doctors tossed around terms like “aortic dissection” and “lupus”, neither of which turned out to be correct. So, I went home again.
Eventually, the pain moved to my head; so intense that I could not touch it, apply pressure, or even lay it on a pillow. The deep throbbing also made a stop at my heart, resulting in chest pain that mimicked a heart attack and shot down my left arm. I was frightened and frazzled from all the tests, the lack of sleep and the pain—shooting, stabbing, throbbing, and dashing its way through my body. On my third visit to the hospital, with unwashed hair and burnt-red eyes from all the crying I’d been doing, one doctor held my hand and promised me I wasn’t going to die that day. I didn’t. But I didn’t get answers either. I went back and forth to the hospital five times that summer after the Leaving Cert. After countless tests, changing GP’S, late- night trips to the hospital for chest pain that you cannot ignore, and a flurry of pain meds like oxycodone and tramadol, I was finally told I had Fibromyalgia.
Fibromyalgia is a central nervous system disorder and can be described as a central sensitisation syndrome, caused by neurobiological abnormalities. This acts to produce physiological pain and cognitive impairments, as well as neuro-psychological symptomatology.
In simpler terms; Fibromyalgia is a chronic condition characterised by widespread pain in your muscles, nerves, ligaments and tendons, as well as chronic fatigue and multiple tender points. A myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centres around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.
I also struggle with Chronic Fatigue Syndrome or Myalgic encephalomyelitis (CFS/ME) is a neurological disorder that affects multiple systems of the body and often follows an acute viral infection. Sufferers experience range from brain inflammation, headaches/migraines, bone and muscle pain, swollen lymph nodes, muscle spasms, seizures, vision abnormalities, bowel dysfunction and cardiovascular abnormalities.
Fibromyalgia is still somewhat of a black box to the medical community. It is a diagnosis of exclusion; to get the label, you must have pain in all four quadrants of the body for more than three months. Often, you have at least some of the 18 fibro' “tender spots” on your body, on your legs, on your shoulders, on the back of your head, that trigger pain when pressed.
The condition seems to impact the central nervous system too. It affects the way the brain processes messages, seeming to misread everyday sensations as full-blown pain signals. It’s also possible those with fibromyalgia have higher levels of a chemical found in the cerebrospinal fluid, substance P, which sends pain impulses to the brain. There are lots of theories, but few firm answers—and none that seems to explain everyone’s fibromyalgia case.
The easiest way I can describe a flare-up is: Imagine your iPhone is broken. Every time you recharge it, it may show a full battery but in reality, it’s always sitting at 30 per cent. Your phone has many functions, each requiring a different amount of power. It’s up to you how you use your battery. If you stick to small activities like texting your battery will last longer. If you watch a video or play a game then you will run out quicker. If you run out of battery your phone will switch off completely and take longer to charge. Fibro is the same. Your body has a very limited supply of energy. You have to think carefully about what you do every day, so you don’t run out of battery and shut down in pain. The feeling of the pain is like its engraved into the pores of your bones, marinated into your muscles and nervous system. What helps me through flares are my CBD products, hot shower and medications. Online fibromyalgia support groups really do make me feel that, even though I should be striving at my age, partying or travelling, that I’m not alone in this battle and we are there for each other for support. The positive outcome of my illness is that it really puts the cliched “I’m here for you no matter what” saying into the spotlight.
While Fibromyalgia and CFS (Chronic Fatigue Syndrome)/M.E (Myalgic Encephalomyelitis) are not rare diseases by the numbers, even though they are in the World Health Organisation listed as neurological diseases, we can feel it, by the rarity of research, understanding and treatment by the chronically ill community. These are life-changing and debilitating conditions and we are often outcasted sufferers of stigmatisation and marginalisation. These also come at the cost of sufferer's struggling with their mental health due to the impact.
This pain affects all areas of our lives for obvious reasons. Fibromyalgia causes insomnia (due to pain). No sleep, causes tiredness, resulting in chronic fatigue. Simple but yet a destructive cycle, known well by too many. It also causes the not so obvious things such as having to plan out your day depending on how many “spoons” you may have.
The spoon theory is a disability metaphor and neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness.
European Parliament has signed a declaration, calling for the recognition of Fibromyalgia as a disease which causes disability. And after a historic debate in the UK, Westminster Hall, on Tuesday 15th January, MPs of all parties contributed to a debate on fibromyalgia, helping to raise awareness of the condition. They shared stories from their own lives, and those of their constituents, about its impact. The debate focussed on the impacts of fibromyalgia, the support available and how the healthcare and benefits systems could be improved for people living with condition. It followed a petition started by a person with the condition, Adrienne Lakin, that attracted over 115,000 signatures and called for fibromyalgia to be recognised as a disability under the Equalities Act 2010. Over 20 MPs turned up to speak in the debate. It was led by the Labour MP for Chesterfield, and in Westminster, Toby Perkins.
So, I did something similar here. I started a petition calling for the Irish Government to recognise Fibromyalgia as a disability. I want to stand, sit or lie in in solidarity with my fellow Spoonies and to help raise awareness of our reality and injustice on our invisible daily battles.
We want better communication and updated understanding from the healthcare system. We deserve increased biomedical research funding, removal of ineffective treatments and instead care provided by medical professionals who are trained in the accurate diagnosis and appropriate treatment.
I wrote to my local TD Clare Daly, who contacted Minister for Health Simon Harris to query why Fibromyalgia was not included on the 'Long term Illness list' and what steps would he make to ensure Fibromyalgia be recognised as disability. To which he responded:
"The conditions covered by the Long Term Illness are: acute leukaemia; mental handicap; cerebral palsy; mental illness (in a person under 16); cystic fibrosis; multiple sclerosis; diabetes insipidus; muscular dystrophies; diabetes mellitus; parkinsonism; epilepsy; phenylketonuria; haemophilia; spina bifida; hydrocephalus; and conditions arising from the use of thalidomide.
"Under the LTI Scheme, patients receive drugs, medicines, and medical and surgical appliances directly related to the treatment of their illness, free of charge. There are no plans to extend the list of conditions covered by the Scheme at this time."
On Thursday April 4th at 2.45, each party will make a statement on Fibromylgia. This means that each political party will get 10 mins to speak on the topic. You can find your local TD here and write to them to ask that they ask the Minister for a reason why Fibromylgia is not classified as a LTI.
I've only had this illness for 4 years and I almost gave up. I’ve found the best of friends, my squad who really did stick by my side, especially my best friends Foley and Zieba, who have really shaped me on my journey. But if it wasn't for these guys I wouldn't be writing this now. It's been 35 days since I wrote my goodbye letter and my initial plan.
My hopes for the future is for people to have a sense of awareness on invisible illnesses. Just to know that you truly never know what goes on behind closed doors. I’ve forgiven the people who hurt me, who walked away, who assumed things about me. But I won’t forget. Just have empathy and love.
My motto? "Don’t judge a disability by its visibility or ability". Not all illnesses are visible.
You can sign my petition here.