It’s been some time since I wrote anything that wasn’t a poem or a social media post. And that’s telling in itself.

I’ve been struggling over the last few weeks with what I can only assume is depression. There is no rhyme or reason to it. I have nothing to be down about. On the contrary, I am grateful for what I have and who I have around me. I’m not grieving for what I have lost through my chronic illness like I was last year – or at least I don’t think I am.

So I wanted to write something down. Something that tries and answers the “why are you sad?“, “you’ve got so much to be happy about” and, worse, “cheer up” comments and messages I’ve been receiving all week. Of course, I won’t be able to answer those naive and sometimes insensitive comments. This article runs the risk of being nothing more than the ramblings of a (currently) miserable man – but what I hope is that it offers some insight into what so many millions of people experience on a daily basis—the torturous rollercoaster of depression and the often fruitless quest to try and understand why.

Why do they leave?

It is evening. The early summer sun is glowing Jaffa orange through the grubby window of an unknown train. On an unknown journey. I am sitting with my wife, her best friend – with my parents across the aisle in an adjacent ‘table seat’. I do not have the luxury of the additional space. There is no suggestion of my son being in this scene. I feel trapped.

Soon, everything starts to unravel to the beat of the tracks below as the pace of the train increases—Da-dum, da-dum, da-dum. Suddenly, a beautiful evening has turned into friction. Everyone is angry at me, but there are no words – just looks – frowns and taut lips, the occasional wag of a judgemental finger. This new atmosphere pushes me into my ever-narrowing seat that by now is holding me in place. What did I do? What have I done?

In the blink of an eye and with the flash of the now white-hot sun that melts the train window, everyone gets up and starts to leave. I don’t know where they are going. I can’t stand up. I don’t know why they are leaving me – but they are leaving because of me. Another flash of the ever-closer fireball, and instantly I am alone. The train is empty except for some scattered papers fluttering in a breeze of unknown origin and a few abandoned belongings in the apparent rush of strangers and loved ones to get away from me.

One of these papers floats beautifully back and forth as it descends onto my lap. It reads, in an unknown handwriting, “you are not enough”.


And this is how I start my day as I write this. Sometime around 5am. I don’t have these dreams when I am well. So I share that experience to explain how depression is not something you can escape from. It’s exhausting. Even in my dreams, I am failing, repulsive or unwanted. You cannot get away from your own thoughts – you can only buy a few precious moments distracting yourself from them throughout the very long day and even longer nights.

The other reason I share this is to try and get across how terrifying the experience can be. Obviously, this was a dream, but it doesn’t end when you wake. That same feeling of being trapped, enclosed, unable to be ‘good enough’ remains – throughout your waking hours and into the next nightmare. After several days, it’s sometimes hard to know where the dreams end and the days begin.

How does it start?

How does all this manifest? Well, there’s the real headscratcher as it’s seemingly random. After a lovely sunny bank holiday weekend with family, enjoying the relaxing of lockdown rules, and a good start to the short week at work, I woke up last Thursday morning utterly miserable. Crying for no reason. There was no bad news. No fear for what lay ahead that day and certainly no melting trains or being abandoned that started all this. In fact, I had received good news the day before – an exciting new opportunity for my advocacy work.

I woke up, spun my pain-free legs out of bed, put my head in my hands and started to cry.

By the time I dragged myself to the shower and realised I had that all too familiar empty feeling, the ‘dark flatness’ I sometimes refer to it as, where literally nothing excites you, I knew I was dealing with depression again. You could win a holiday that very morning, get a call from the boss demanding you stay home and play computer games all day until 5pm – whatever would be your idea of winning the ‘fun lottery’ – it wouldn’t be appealing. So you simply sit, stare and feel nothing in the bath of lukewarm melancholy numbness you find yourself in.

Why does it happen?

So why did I wake up depressed? With no external factors, trauma, stress or fears, sometimes it can be as simple as changes on a biological level. However, I know I am not addressing the real reason in my personal situation.

I have suffered from depression severely only twice in my life – during major flares as a teenager and again in my mid-20s, and between 2019-2020 when I started to write on this website, According to the Rethink Mental Illness organisation, lifestyle factors can lead to a higher risk of depression, specifically:

Some studies have shown that not exercising, being under or overweight and having fewer social relationships can increase the risk of experiencing depressive symptoms.

What are the signs and symptoms of depression? (rethink.org)

My personal experience

After years of planning around my health, I became a dad in January 2019. The same month, people like me with autoimmune conditions in England were informed that we were being switched from Biologics treatments to ‘Biosimilars’ as part of an NHS cost-saving move.

We were given little notice – just two weeks between a consent form thrust under my nose at a routine appointment and the change itself. However, the information we were provided clearly stated that we could switch straight back should there be any adverse effects.

At the time, I was a shining example of what biologics could do for the quality of life for people like me. I was in a wheelchair as a child – the prospect of biologic therapies not only gave me hope through my childhood, but when a flare became out of control in my 20’s, and I finally gained access to them, they changed my life.

Within two weeks, I was pain-free. Within four weeks, all of my psoriasis rashes had vanished! It was incredible. I promised my doctors that I would make the most of the opportunity, and I did. Within a year, I had dropped 25kgs in weight, played competitive sport, and ran half marathons.

Within a month of the switch, I was in agony. Then the rashes returned. Despite the promises of switching back, it took me 11 months of fighting and crying in doctors rooms to get back to my original treatment. But by then, it was too late. My first year of parenthood had been tarnished—harrowing experiences like not being able to carry my son. Worse still, two years on, I remain in chronic pain despite my arthritis being back under control. The pain pathways created in my brain seemingly left stuck in the ‘ON’ position long after the flare has since subsided.

Falling. Still falling.

I fell from one of the highest points in my life I could have fallen from. Fit, active, doing things I only dreamed of as that kid in a wheelchair – not to mention becoming a dad, a beautiful family, a new modern house and a job that I loved. I lost everything in that time, My mobility, my confidence, friends – so many friends, and to make matters worse, I was left in permanent pain, even today, two and a half years after that fateful switch.

Hours of CBT and other talking therapies have established that this is the likely cause – even if some days I try to explain ‘I have no reason to be sad’ myself. But, I know, deep down, there is still a lot of pain and resentment lingering amongst the cracks and scars of that event and the experiences from it.

Why are you sad?

So now you have the “Why are you sad?” – although I still can’t tell you definitively or the when. There are obvious triggers, such as bad news, stress etc. but last week came completely out of the blue. If I had to pick something to put my money on, I would say seeing old friends getting out and about in the sun over the last week probably contributed. Whilst the world has been in lockdown, I’ve felt somewhat on a more even playing field. As things open up again, I am reminded of what I used to do – with whom I used to do it, and after a year, that hurts.

You’ve got so much to be happy about

Yes, I have. I know I’m a lucky guy, but it doesn’t make an ounce of difference. If I had a million pounds in my bank account right now (I don’t, by the way, Mr Taxman!), yes, it would perhaps limit the impact a stress trigger could have before it became a trigger. Still, it doesn’t prevent or cure mental illness – and depression IS clinically recognised as a mental illness.

So frankly, this statement is about as ignorant and stupid as they come, bar the final one.

Cheer up!

Telling me to cheer up is like me demanding you grow an extra four inches by saying, ‘don’t be short, mate’. It’s f*cking ridiculous! Yet, in the UK, anyway, it would appear to be many’s default response to any sign of low mood, particularly amongst men.

I remember the first time I knowingly considered how absurd that comment is was when I sat in a hockey club changing room upset over a failed relationship when a friend put their arm around me and said those dumb two words – I can’t even bring myself to type them anymore, it tastes bitter in my mouth without me even saying anything – as if that would heal a broken heart in an instant. But, of course, we don’t say it to grieving people who lost loved ones, so why is it acceptable to say it to someone with a mental illness or after terrible news like I had that day in the changing rooms? It’s pre-historic.

I can’t ‘cheer up’ or ‘snap out of it’, I can’t tell you how long it’s going to last, and I can’t tell you why I have very little interest in anything at the moment – but I can try and explain how I’m feeling, how my head is like a warzone of noise and negative thoughts – if you’re prepared to sit and listen without judgement.

Because, until you have been in this position (and I sincerely hope you never will), of living with a feeling of hopelessness like there is a plug that’s been opened in the soles of your feet and any joy, meaning, and self-worth has been slowly sucked out of you, where all you can think about is how useless you are and how you let everyone around you down – then you simply cannot understand my pain.

Useful Links

Below are some initial suggestions from RETHINK for providing practical day to day support to someone with depression.

  • Offer them emotional support by being a good listener, reminding them that treatment is available and reassuring them. Remember that depression is an illness and people cannot “snap out of it”.
  • Encourage them to get some exercise and eat healthily. You could invite them out on walks, or help them do things they used to enjoy.
  • Keep a note of changes in their medication, or their condition. This can help the person you care for in appointments.
  • Help them to stay away from alcohol and other unhealthy things.
  • Take them seriously if they are feeling very unwell and are thinking about hurting themselves.
  • Encourage them to get professional help.

You could also try and find out about self-help or support groups in their area. Your local IAPT service may be a good place to start.

Think about what you can do if you are worried about someone’s mental state or risk of self-harm. It will help to keep details of their mental health team and discuss a crisis plan with them.

https://www.rethink.org/

https://www.samaritans.org/

Get help from a mental health charity – NHS (www.nhs.uk)

Website | + posts

Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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