I must admit, the word ’emotional’ is not normally a word that is usually associated with me. Much like my father, I carry on my day with a stoic, expressionless face; which reflects calm and calculated thought, reflecting my practical and often clinical approach to life.
Oh how things can change…
I’m sure there are plenty of young men out there that bury emotions deep, putting them on that imaginary shelf, waiting for the right time to take them down to deal with once in a while, once the shelf gets too full to cope with your emotional baggage.
It’s these kind of young men – men like me – that can suffer the most when diagnosed with a chronic illness like Ankylosing Spondylitis (AS).
I use the term ‘young men’ purposefully. It’s not I don’t recognise that older men and women suffer too, of course they do. But I use that term of phrase for two reasons:
1. Most people are diagnosed with AS early in their adult life. Yes, there is a huge delay between onset and diagnosis, but generally most AS sufferers start their journey in their twenties or early thirties, if not before.
2. The older we get, the more ‘life experience’ we get as we are exposed to the less pleasant aspects of life. Death and illness occurs more frequently, and relationships may come and go, but all these emotional stresses in life make us more adept in dealing with the next event that comes along. So as we get older, the better we get at ‘coping’.
Being diagnosed with a chronic illness at a young age comes as a big shock. You expect it when your older, but you don’t expect it in your twenties. I remember being filled with an ambivalence when I was diagnosed. As I was left with too many questions and not enough answers, deepening my anxiety and worsening my fears.
On one hand, I was finally glad I found a name for my problems. Finally I could start to get better, lessen the pain, and return to work. But then I found out AS is a degenerative disease, chronic, incurable, for life. This is when my mood swung with such a ferocity, that I slumped into depression.
It would be an understatement to say dealing with such a life changing event at such a young age is difficult. Compounded by a lack of information and support makes it darn near impossible.
There are many great resources out there for those newly diagnosed with AS. Such as NASS and the SAA. But you can only use them once you have been told they are there, or once you have actively gone looking for them.
Unfortunately depression is common among AS sufferers. With 1 in 5 people that remain in full-time work affected, and 53% of those that are unemployed reporting depression in the the UK.¹
Even with what I know now, I know of not one service which is aimed at addressing this specifically, or addressing the emotional aspect of AS. I really hope one of you tell me I’m wrong.
There are plenty of services available to help sufferers deal with the physical symptoms, and management of their condition, but what of our mental health?
Sure, social networks and local AS groups can help people deal with this, but again, it’s up to the individual to go and look for the support they require. And if you know anything about depression at all, you’ll know that depressives are pretty bad at asking for help.
So what can we do about it?
Probably not as much as we’d like to. Providing psychological support for all diagnosed would mean considerable changes to health care systems. Which will inevitably take a considerable length of time.
What about in the short term?
Well just because ‘we’ didn’t have the help, and ‘we’ did it the hard way, it doesn’t mean others have to. It’s difficult to approach people for help, but this is made easier by letting them know we are here to help, that they are not alone. Help them grieve for their diagnosis, and give them a big hug, either physically or virtually.
What I’m asking of you, is that next time you meet someone that has been newly diagnosed , say this:
“Many won’t understand, but I do. We are in this together. You are not alone.”
(Hugs optional, compassion compulsory).
¹ EL Healey, KL Haywood, KP Jordan, A Garratt, JC Packham (2011) Impact of ankylosing spondylitis on work in patients across the UK. Scand J Rheumatol 2011;40:34–40