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My Arthritis Story Chronic Illness and Mental Health

Disability adjustment – it’s not hard to get lost down this river

Note: Undertones of this article are based upon the work of Brian Fallon in his song ’21 Days’. I will post the lyrics at the bottom of this article so that all credit is given to him where I have used excerpts in the title and headings. His music really connects with me so I’m trying something different, writing an article with a backing track, so to speak.

This article was written with this song on loop, so for maximum effect, I’d welcome you to listen whilst you read my words. Stay strong. Joel. x

Brian Fallon – 21 Days

In my eyes, I am broken. I don’t have any respect or empathy for the body my mind has inherited anymore. I know there are many many people worse off but I can’t let go. Can’t move on. I am stuck between stations, to quote another lyricist I look up to in Craig Finn of The Hold Steady.

“Trying to minimise the damage”

I have never shied away from the fact that I am getting help to support my mental health during this transition from able-bodied to disabled. I am lucky enough to have access to Cognitive Behavioural Therapy (CBT) as well as Disability Adjustment Training.

I think it’s important to talk about the impact disability and chronic pain has on my mental health, no matter how uncomfortable it makes me, especially as a man.

Since the mid-’90s, male suicides have consistently accounted for around 3/4 of all suicides in the UK. It’s a breathtaking statistic. In fact, it’s the single biggest killer of men under the age of 45 in this country (Wikipedia Contributors, 2020).

Think about that for a second.

Over the course of this last year, it’s something I’ve thought about on occasion myself. It makes me feel sick to type that.

“It’s not hard to get lost down this river”

I find myself apologising for everything. For feeling like a burden. For not being the version of me people signed up for. Whether that be my wife, my employer, my son.

Biologics allowed me to be everything I wanted to be. To build a life around sporting endeavours, being active, the outside, riding motorbikes, playing and recording music, running. To start a family.

I was grateful for what I had and used my ‘second chance’. Then, as time passed, I took it for granted. I forgot about my childhood, growing up on crutches, in hospital wards, the pain; furthermore, the restrictions.

“Call it falling out of love”

I became complacent and still find myself wishing I never got that second chance. That I just carried on in the groove I was in. Disability was part of my everyday life, it was me and I accepted it. Now, I hate that part of me. The broken part. And I hate myself for hating it…and so the current carries me further down.

Today, I find myself over-explaining as much as I unnecessarily apologise, trying to make up for the fact that a task that used to take me 10mins now takes me an hour. I have a constant need to try and add value. Compensate.

One thing I’m not doing, however, is adjusting. And it’s slowly dismantling everything.

A throw-away comment pointing out the supports and aids I have to use to get through my working day when I’m already conscious of them. The person that decides to tell me that my shielding is pointless when my poor health could kill me young anyway. Or the person you really respect that ignores you because the conversation about where I have been (and just as important, where the hell have they been?) is too awkward.

All of these things happened to me this week and all of them shatter my confidence and make me more and more aware of the changes in me.

I miss my confidence, I miss having friends, I miss the often multiple pursuits and hobbies that made up me. I miss the creativity of making music. I miss being motivated. Most of all, I miss being interesting. I can’t stand being around myself so why anyone else would want to, is completely understandable.

“Call it breaking a habit”

This has to change.

I am in a torturous position where I have insight. I can see what I should be doing but it’s a hell of a challenge to change the behaviours of a lifetime. The safety mechanisms I put up in my teenage years to protect me from school life with a physical disability are the same things that are stopping me from moving forward now.

I feel the need to offer explanations and apologise for my health when I wasn’t around or able to do something. Why? Would a cancer patient apologise for getting treatment? So why do I feel I have to for my chronic condition?

I’ve moved mountains to get back into work, to walk my own dog again, to get back into the world. But why is it that people see you doing this and think you are better? That you are no longer being treated or unwell? Just what is it about chronic illnesses that the regular person struggles to understand?

It’s also what makes these comments so upsetting and shapes my behaviour as it does. If people knew how long it takes me just to get online to work, how little sleep I am doing it on or how much pain I might be in for hours after they saw me walking my dog, maybe they would think twice before being an arse and making comments like ‘but you weren’t limping when I saw you?’.

“Call it being transformed”

I might not be able to turn off my default behaviour overnight. Or start loving the new me, having more self-respect or be any happier about the situation. But I am going to try and stop apologising for my health. My disability.

Yes, I feel guilty that I wasn’t able to help when people needed me the most during the pandemic. My wife, work, family, Dylan; all whom would have been better off if I wasn’t on crutches, in bed or mentally struggling. But I must stop saying sorry for being damaged. I didn’t cause, inflict or ask for it.

I’ve dragged my arse, kicking and screaming, through my whole life to overcome my condition – so what on earth am I apologising for?

One thing I have learnt these last few months is that adjusting to disability and the impact on your mental health go hand in hand. More needs to be done to ensure a holistic approach to treat both when somebody faces a sudden or gradual deterioration to their physical health and mobility. Telling me to take painkillers and leaving me to it was not enough.

As hard on myself as I am, I am lucky. I was strong enough to pull through the darkest of days over the last 6-12mths. Without my 18mth old boy looking me in the eyes every day, I’m not so sure I would have found that strength. I could have so easily been another statistic.

Be kind on yourself. Ask for help. Somebody cares.


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.


Brian Fallon – 21 Days
It’s so easy
To fall in love
It’s not hard
To get lost
Down this river

I miss you most
In the morning
We used to talk
Over coffee
But now
I’m gonna have to find
Another friend

When it’s over
We do the leaving
We do the crying
We do the healing
And they say
21 days ’til I don’t miss you
21 days ’til I don’t miss you

It’s so nice
In the night
I would breathe you in
And you would lie
And say, my friend

I’m just waiting
On the rapture
Trying to minimize
The damage
And hoping
To keep my idle
Hands occupied

When it’s over
We do the leaving
We do the crying
We do the healing
And they say
21 days ’til I don’t miss you
21 days ’til I don’t miss you

Call it breaking a habit
Call it falling out of love
Call it breaking a habit
One day at a time

When it’s over
We do the leaving
We do the crying
We do the healing
And they say
21 days ’til I don’t miss you
21 days ’til I don’t miss you

Call it breaking a habit
(21 days ’til I don’t miss you)
One day at a time
Call it breaking a habit
(21 days ’til I don’t miss you)
One day at a time
Call it being transformed
(21 days ’til I don’t miss you)
By the renewing of your mind
Call it breaking a habit
(21 days ’til I don’t miss you)

Source: Musixmatch
Songwriters: Brian Michael Fallon

References

Musixmatch.com. (2020). Musixmatch – Song Lyrics and Translations. [online] Available at: https://www.musixmatch.com/ [Accessed 16 Jul. 2020].

Wikipedia Contributors (2020). Suicide in the United Kingdom. [online] Wikipedia. Available at: https://en.wikipedia.org/wiki/Suicide_in_the_United_Kingdom#:~:text=The%20highest%20rate%20of%20suicide,significantly%20more%20than%20in%202017. [Accessed 16 Jul. 2020].

One Comment

  1. Pingback: Your Stories: How living with chronic illness has impacted my mental health - Joel vs Arthritis

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