How my mental health and chronic illness are intertwined
In a year that presents an obvious event in which to discuss on what could be the most important World Mental Health Day ever, I wish to tell a story that offers an escape from Coronavirus, pandemics and lack of toilet roll at your local supermarket.
I can’t promise you it will be anymore cheery than what’s going on outside your window right now in this surreal year. In fact, it will almost certainly take you to some uncomfortable places – but it should. Because until talking about mental health is no longer uncomfortable for the general population, then it is something that needs to be discussed. It could be the difference between life and death.
This is my story of mental health and how it has been impacted by my chronic health condition over the years.
This article builds upon points raised in these previous pieces…
To be young is to be resilient
When I was a child with Juvenile Arthritis, I can’t sit here and say that my mental health was impacted by my chronic illness at the time – because I have very few unhappy memories that suggest it was.
Yes, I deal with some trauma around separation from the many nights I spent left alone in a children’s ward. But that only really converted to a problem when I became a parent and heard my son repeat those chilling lines of ‘Daddy, daddy, no, no more…‘ back to me – but that’s a story for another time.
I have memories of great summers, family holidays, kicking a ball around with my brother at the park, as much as I have memories of being on crutches whilst my siblings played hockey or sitting in a wheelchair as I watched them ride rollercoasters. But it didn’t bother me. I was in pain, subjected to some terrible tests and treatments and, for long periods, immobile but I was happy enough.
From the ages of 11-14, it was what could be considered a different childhood to the norm, made up of long periods of homeschooling and weeks in the hospital, but it was by all accounts perfectly acceptable to me. After all, you only have one childhood – you don’t know any different.
The ‘dump truck of life’
If I had a miserable week in the hospital, I soon bounced back. I was far more resilient then than I am now, as a battle-worn, tired adult, who now nurses the tyre marks of the dump truck that is life. The dump truck which has run over me, reversed back and gone once more for luck over the years.
Those years alone in the hospital. Hours made to sit in waiting rooms as I was studied by people with arthritis six or seven times my age. The unwelcome ‘you’re a bit young for that, aren’t you?’s. The missed school trips and sitting on the sidelines. The slips, trips and falls to the biting laughter of an unsympathetic audience – a sound that can only be found in a high school playground. These all impacted and shaped my mental health, but at the time, I had no idea.
And here lies one of the gotchas of mental health. Often, you don’t know that something is being detrimental to your mental health until years after the event. Unlike a headache, broken leg or a bad back, where the point of injury is pretty obvious, your mental health can be damaged for long periods until you are even aware of it. Imagine looking down one day and noticing you had broken a toe weeks ago. It’s a worrying thought of what that would look like, but that’s what can happen with deteriorating mental health. In my experience, it’s noticed by others before you realise you have a problem.
An unhealthy relationship between my mental health and chronic illness
I first started having difficulties with my mental health in my early 20’s and it’s not uncommon – it’s one of the reasons Early Intervention services and such like are set up in the UK for young adults.
I had been perfectly healthy mentally, and then one day, my arthritis returned. Yet, it didn’t just return as the semi-controlled version in my late-teens. It reappeared with a bang, and a whole host of new issues impacting my skin, energy levels and newly affected joints, not to mention the pain.
My Juvenile Arthritis had returned but this time, it had evolved to Psoriatic Arthritis too. I had the unmistakeable patches of scaly skin but I also had blisters on the palms of my hands and soles of my feet combined with some very noticeable and confidence-sapping rashes on my balding head.
From leader to left-behind
I was around the ages of 24-26 when this happened. I had quickly built a career as an IT Manager for myself in education. Going from a part-time IT technician out of university to get some experience, to the organisation’s Network Manager in less than six months. A couple of years later, I was in charge of two teams split across two campuses as part of the high school Academies project here in England. I helped design an £18m new build and built an entire support team from scratch on very tight salary restrictions.
I loved my job. I’m not a confident person, but I can easily say I was very good at it. I knew it, and the people needed to make everything function inside and out, I felt valued, and at 24 years of age, didn’t see a limit of where that progression would end. I had big plans.
The aforementioned flare didn’t happen overnight. Pain and stiffness returned. Followed by fatigue. I started needing the odd day off. Then I’d get the usual infections as treatments were upped to try and control the spike. As was the way back then, nobody knew I was ill. I didn’t want any weak point in my armour as I climbed the ladder. People had no idea that most mornings, I was vomiting because of the Methotrexate, dusting myself off and getting into work on time every single day.
The onset of mental health problems
Around the same time this flare started, I had my first experience with mental health problems that I was aware of.
Looking back, the onset was a classic case of depression. Starting as low mood, depression, overeating for comfort, feeling worse as my body ballooned, being reckless with my finances as I bought unnecessary items to try and fill the void I had from the depression. I was flat; I was numb, I had no emotions, good or bad – I did stupid things to try and fill the hole where enthusiasm, happiness and motivation once resided. Stupid things I am still paying for today, but at the time, I wasn’t aware I was unwell.
I can’t tell you what caused my mental health and chronic illness to deteriorate at the same time. I believe it was because my disease returned, and it was a deafening reminder of the monster I had been hiding in the box since I was 18. My arthritis was always going to return, but just like 2019, I wasn’t ready to accept it. Especially now, I had a career.
Other schools of thought suggest there is a link between inflammation and mental health or that my depression and low mood triggered an immune response. Either way, it’s a chicken and egg scenario.
The end of an era
Over the next two years, my mental health and chronic illness both deteriorated at a frightening rate. I developed a limp, needed crutches again, had months off work – which only fuelled the depression as I feared for my place, my role, the project baby I had worked tirelessly on for 7-8 years at this point.
By the time I was 27, after less than a year off work with this flare and mental health issues, I received a letter to say it was going to be recommended to the board that my employment should be terminated.
Typical to my style, I resigned a week later. I didn’t want to give them the satisfaction of sacking me.
This is what I’m fighting for
In the 8-9 years that have passed since this event, I’ve grown an indescribable amount. I no longer hide my health issues. I embrace them. And, as you read this now, I’ve gone as far as to tell the world about them in the hope of education and change.
In that dark period in my mid-twenties, I went as far down as you can get whilst your heart is still beating and crawled back out the other side with a suit of scars, broken dreams and forgotten confidence. Until I tell this story today, only my then-fiancee, now wife knew just how dark of a place that was, how close to destruction I came and even then, there are moments I dare not tell her the full detail of.
This is what makes poor mental health such a dangerous thing. To be so close to destruction and your friends, family, people you thought would take a bullet for you being either completely unaware or worse still, unwilling to step in because they didn’t know what to do or how to handle the situation. At my worst, I developed psychosis and started hearing and seeing things that weren’t there – upon finding this out; one friend asked me ‘so are you f**cking mental then?‘. Is your mouth open? Yep, mine was too. I remember thinking at the time a simple ‘are you ok?‘ will do.
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I wasn’t ‘mental’, broken or schizophrenic as one friend insensitively asked. I was simply physically broken and mentally exhausted from living with chronic illness. I’m living two lives, the ‘flaring me’ and the ‘remission me’ and it’s every bit as exhausting as it sounds. Everyone has their limit and a series of events converging at the same time meant I found mine.
The important takeaway is that despite the lack of help from so-called friends and an innocent ignorance from family, I found my way back out of that hole and every day I fight to stay away from the edge. The event horizon of depression.
On reflection – it was wrong. I was wrong.
As a man in my mid-thirties today with a beautiful son and going through a similar experience with my physical health – I realise now that what happened to me in that job was very wrong.
I’ve intentionally kept details vague as it’s the first time I’ve openly talked about what happened and trust me, if I ever have the confidence to lift the lid fully on what happened there, the lack of support, bullying, obvious grounds for unfair dismissal and breaches of the Equality Act 2010, you would be far more shocked than what I have disclosed – but that’s for another time.
Going through a similar experience this year and seeing how wonderfully supported I have been by my employer, colleagues checking in on me, reasonable adjustments and steps taken to try and help me with my new/returned disabilities whilst I ride this wave out has been incredible. It gives me confidence that in small ways, we are learning to recognise mental health with the same importance as physical health in this country. It’s also opened my eyes, however as to how badly and illegally I was treated when this last happened all those years ago.
I spent the best part of twenty years blindfolded. Only seeing half of the picture as I obsessed over my arthritis and chronic illness. It took going through that terrible experience and seeing the good and the bad side of humanity to realise I have to treat my physical and mental health as one and the same.
High, persistent levels of pain, fatigue, lack of sleep, horrific side effects from medications, always having to cancel – these all impact your confidence, mood, resilience, i.e. your mental health.
I’m disappointed in myself that I never put the two together until now, but through articles such as this and campaigning, I hope to raise awareness of the connection between our mental health and chronic illness. Not just to raise awareness for those who are unaware, ignorant or hold strong ‘old school’ views on the subject but to support other people like me, who, once they are aware of that connection can start treating it as they would their physical symptoms.
I don’t want anyone to go to that dark place I went to. That place where all hope is lost and there doesn’t seem to be any other option. I don’t want anyone to lose their jobs or financial security because of an employers lack of understanding or ability to support either.
Learning to manage my mental health, as I do my physical health
Clearly, I see things very differently now and that helps me to manage my condition and stay away from the claws of depression as best as I can. Even though we are occasionally forced to share one another’s company.
I’ve always felt like I’ve been playing catch up my whole life – I am top weight in the Grand National and have to work that much harder than everyone else to be on par, succeed and not be judged as ‘you did well, considering’. It’s how I built my career, but I recognise now that it also contributed to the deterioration of my mental health.
My fear of missed opportunities and ‘making hay when the sun shines’ when my arthritis was controlled meant I didn’t rest when I needed to, I didn’t switch off, answered the work phone at all hours, didn’t listen to the signs with blinding migraines etc. – hell, at one point I was drinking cans of Relentless energy drink with Anadin Extra and Pro Plus dissolved in them for lunch to get through the day. It could have killed me and in some ways, I’m thankful my mind put me in a bed before my physical health completely broke down.
I’ve removed toxic elements from life, including some people. I’m still learning to pick my battles. Whether that’s removing myself from social media debates, issues out of my remit at work, arguments that could be avoided etc. If you see me ‘disengage’ for a while, that’s not me ‘hiding’ or ‘being unsociable’, that’s me managing my mental health and you know what, I’m proud to claim that.
Everyone has a limit, it’s recognising and knowing what to do when you approach it that matters.
It took becoming a parent for me to place the appropriate value on good mental health and the kindness of others to appreciate where I had been mistreated. I don’t want my son to suffer like I did all those years. I want to be a role model for him as much as secure my future good mental health, to be around for him as long as I possibly can.
My personal message to you
There is no quick fix for mental health problems. No plaster or pill you can take. A holistic approach is needed. A lifestyle review and a need to understand what is important to you and when and how to ask for help. An approach that works regardless of the state of your physical and chronic health.
Managing your mental health is an ongoing process, and with time, the cracks will heal, and even then the scars may remain – and that’s ok because those fault lines act as a warning of where I’ve been. A cognitive growth ring serving as a reminder of how I’ve evolved from this period of poor mental health from the last in my twenties.
I’m not fixed, cured or healed; I’m learning to repair and manage my mental health. And during that process of restoration, I’m building in greater resilience from an improved understanding of myself and willingness to ask for help, and I encourage you to do the same.
From the ashes of previous battles against depression and anxiety, I’m building a more robust future for my family and me. I’m the architect of my future happiness, but embracing the support available is what turns those plans into a strong defence against future threats to my mental health.
If you need to talk to somebody or were affected in any way after reading this article, please call Samaritans now on 116 123. It’s free and open 24hrs a day, 365 days a year.
You can also contact your GP or local Wellbeing Service or visit this page for more info on free counselling services: https://www.nhs.uk/conditions/stress-anxiety-depression/free-therapy-or-counselling