Hugs Optional, Compassion Compulsory: Dealing with Depression


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’.

Depression

Image credit: Stock.xchng user – naktouf

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 UKScand J Rheumatol 2011;40:34–40

 

33 Replies to “Hugs Optional, Compassion Compulsory: Dealing with Depression”

  1. David Bairstow

    I don’t like to use the D word, but I often find myself teetering on the edge of it. I’ve been off work 18 months, I’m new to fatherhood with a daughter I have little energy for. And I rarely leave the house just in case someone from work sees me and thinks I’m sciving.

    Reply
    • Endless Trax

      I remember those days David. It was made even worse because I used to live in accommodation supplied by work. Was tough. Having a lack of energy definitely doesn’t help with a little one. I have a 1 year old too. Thankfully though my energy levels are better than they used to be, but in the main I have learnt to cope with it.

      Hope you can get well enough to go back to work soon David.

      Thank you for your comment

      Reply
  2. James Allen (@GigaJim)

    Completely agree with the fact that AS hits younger people the hardest, and the younger you are the less life experiences and confidence you have had to help deal with the fact that you have AS.

    For me, the best anti-depressant was going to my local NASS group to meet other people with AS, to exercise with them and realise you are not alone. There are 10+ people who go, and are local to me – it’s much more common than I realised, I expected only 2 or 3 people! Swapping stories with my NASS friends I’m always amazed how similar their experiences are to mine.

    But the big problem is that I’m by far the youngest member of the group (I’m 31). There are no young people in the group. And there should be. I’m frustrated and maddened by the fact that rheumatologist don’t make their young AS patients aware of NASS or similar groups. They only think of the drugs side of things. I only found out about NASS from a small poster I happened to see on the noticeboard at the hospital hidden away in a corridor.

    Can I suggest the best thing we can do is write to our rheumys and tell them to raise awareness of local AS clubs – I’m about to do that myself right now.

    Reply
    • Endless Trax

      “Can I suggest the best thing we can do is write to our rheumys and tell them to raise awareness of local AS clubs”

      Love this idea James.

      Unfortunately, my work gets in the way of me going to my local NASS branch. I also found there really aren’t many young people there.

      However I know NASS are working very hard to try an tackle that.

      Reply
  3. Cassandra Roseanne Morris

    Hi there, i’m really glad that I somehow stumbled upon your blog. Just knowing that there are other people out there going through the same things as me gives me a bit of a boost to get through the day. I too have struggled with both being diagnosed at an early age as well as the constant frustration of the impact of my condition on my life.
    Like James, above, my local NASS group have been a great support to me, to be able to discuss symptoms and medications etc with people who know what I’m going through is great. such a friendly group, not many young-uns there, I think I’m the youngest in my late twenties. Also, being of the female variety I’m something of a rare breed in the group!
    Good luck to anyone suffering out there and congratulations to all of you who have struggled and battled through to the other side and gotten control of your conditions! With Compassion and Hugs.

    Reply
  4. joyce lameire

    Great post! I am not prone to depression thankfully and always try to stay positive about my health, but when I do start to get “negative” in my thinking, then it’s time to take a few days off to re-boot my brain. Without support groups online and these types of blogs I woul be out in the cold. I know of no one personally that has AS so my interractions are always limited to emails and “liking” posts. Thanks :0)

    Reply
    • Endless Trax

      “then it’s time to take a few days off to re-boot my brain”

      That sounds painful Joyce ;). Hope it’s legal….

      I’m glad you find the support you need, even if it is online only. Thank you.

      Reply
  5. Juliette Wills

    One of the most depressing things all round is being diagnosed with an incurable illness (or in my case, three of them), then writing a book which you hope helps other sufferers and inspires those lucky enough to be healthy, and finally writing a blog in which you are proper hilarious despite all that life’s thrown at you… and then receiving hate mail!
    Doh.
    Honestly, I think we all do a great job just getting by, and anything more than that deserves a medal, or at the very least, a packet of crisps. I was at my lowest point a few months ago. I had a massive mental and physical breakdown. The constant pain and frustration was too much to bear. If GPs would only realise that they could help with the mental anguish, while the rheumatologists dished out the pills, things might work out a little better for us, a little sooner.
    A brave post.

    Reply
  6. Isabella Smith

    Hi everyone. A shy attempt to your question: ?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?” A couple of months ago I stumbled upon mindfulness, particularly Vidyamala Burch’s book “Living well with pain and illness…” Since then I’ve been reading a lot of books and peer-reviewed articles about the efficiency of practicing mindfulness both for coping with pain and with stress, anxiety, depression. I find this to be a very powerful promising approach. If I lived in UK, I’d actively look for Vidyamala’s Breath Works classes.
    Wishing you all well, peace, and the strength to cope with this all.

    Reply
    • Endless Trax

      Thank you for ‘shy attempt’ at my question.

      There are so many different ways to deal with stress and depression. We are all different, requiring different help and support.

      I’m so glad you found a way to deal with your demons. Thank you for your comment.

      Reply
  7. Bevvers

    It’s not just the disease that causes depression. I work full time and constantly struggle with how much medication or should I say how little I can get away with taking due to the cost, I get sick and tired of people saying about prescription pre payments I don’t think they understand that to get a prepayment you have to pay upfront, where are we meant to get the money from for that? Surely if you have a progressive disease for which there is no cure and constant medication is essential we should not have to pay, we didn’t ask for AS and would gladly get rid of it if possible. The NASS groups are a fantastic idea for support but again it’s the cost implications that stop me going, I would have to drive to the hospital, pay for parking, and pay for the meeting it is all money I do not have.
    Sorry to have had a whinge but I think we are treated so unfairly.

    Reply
  8. Debbie Cook, Director, NASS

    Fantastic to see so many comments on Ricky’s blog. NASS is listening. NASS is also working very hard to develop its excellent physiotherapy branch network of 87 branches and encourage younger people to attend. We campaign to get a better deal for people with AS and their families. We run a free Helpline. We work with GPs. Take a look at our website to see all that we do.

    Huge thanks to Ricky for writing this great blog post which I’m sure will provide some support to people out there.

    Reply
  9. Tracey

    What about pain management clinics? They look at the individual’s life to help them develop a pain management strategy which goes beyond medication and stretching exercises. You’re probably the best person to advise but The British Pain Society might be a good start in the UK. Research suggests that understanding how the brain creates pain can help reduce it whereas depression and stress makes it feel worse.

    Reply
    • Endless Trax

      I agree Tracey, pain management clinics can be invaluable.

      Unfortunately they are not a service that someone newly diagnosed will be referred too. As they are usually a last attempt to control pain after all other options have been exhausted. this is usually much further down the line on your AS journey, and by that point depression is likely to have a good hold of you. I think as a community we need to address things sooner.

      But thank you for reminding me about The British Pain Society. I’ll have a dig around to see what I can share with you all.

      Reply
  10. Carissa Engell

    Many don’t understand, but I do. You’re not alone. Doctors need to be re-trained when it comes to their approach with any kind of chronic pain. Often when doctors give an arthritic diagnosis, mental fear takes over because the doctor has not taken the time to explain how to live actively with chronic pain. They usually just prescribe medicine. The patient is left thinking that the pain is an inevitable reality that won’t go away and can’t be managed, when often the opposite is true. Mental control of chronic pain is often half the battle. Your doctor doesn’t know your body like you do. Take back control of your own body, one day at a time. Of course some days you won’t win the battle, but you have to hold on to the days where you do and can be yourself. One day at a time fellow chronic pain sufferers! You are not alone!

    Reply
  11. evei

    great blog 🙂 I think getting your head around AS is tough. For me a diagnosis was a relief but then dealing with the fact that there is no cure and the future hits. My boyf has RA, so I am lucky I have someone who understands and I am also lucky in the fact that my AS is pretty mild most of the time. I think depression must be a big part of AS. I am hanging onto the fact I can still do competitive sport, but the recovery is getting longer and the pain worse whilst I recover. I know it will really hit home with me if I get to the point that I have to hang up my netball bib, it is a massive part of my life, I love being fit and strong and my social life revolves around it.

    I do think it is very sad that some people have no one to talk to, face to face. I feel very lucky that the internet allows people to share thoughts and do think us AS’ers can help each other along with advice and support. I know I have found it a really useful way to get my head around things. I cannot imagine how hard is was to find information 15 year ago, I ca imagine people felt very isolated.

    Reply
  12. guz

    For me the pain is do-able , its rather the restrictions , frustrations and indignation born out of constant compromise which I suffer most. Made all the worse by the infernal tiredness.
    The flip side of this ” approach ” is the ability to entirely forget about AS when its not too bad , Its manic / Bi polar AS ,all or nothing when its bad its bad , when its good forget I have it untill the big come down next time around.

    Reply
  13. Anthony Deave

    Never mind folks when this lot have finished with us, we will be in the workhouse and depression will seem like a luxury compare to whats going to happen to us!
    Depression comes and goes with us spondies,
    I ran a group in Huntingdon for nearly 20 years I got no support from the them board of NASS! When we shown the door of Hichingbrooke Hospital. That gave depression to see all my hard work go down the drain.
    I would also like to point out that Debbie had nothing to do with this sad state of affairs. So hence I am not a member of NASS anymore! I will never be.
    Nick your blogg is good so chin up and carry on.

    Reply
  14. George Davidson

    Have just read your article in the Spring AS News, in which you refer to AS as ‘a degenerative disease, chronic, incurable, for life.’ Whilst strictly speaking correct it can be no surprise that depression results, but I do think that such a description has unnecessarily pessimistic overtones.
    I was diagnosed at age 16, having had symptoms for a year, and initially spent several months hospitalised, unable to walk, with virtually fused hips and lower spine. That was in 1955 so I’ve had almost 60 years experience of AS. I was restored to mobility and to a reasonable quality of life, including holding down a demanding job for 40 years, by a treatment that was discontinued in the 1960s for AS, namely radiotherapy. It was withdrawn because a few patients contracted leukaemia, and, as far as I know, has never been reintroduced. Based on my experience I can’t help thinking it would be worth the risk for severely affected patients, but the possibility never seems to be raised nowadays. It has been supplanted now by anti–TNF therapy, a foreign country to me.
    Yes, I’ve had a lifetime supplemented by physiotherapy, hydrotherapy, and NSAIDS, but at age 75 now take no medication for AS and, weather permitting, walk three miles a day on the joints I was born with. Rheumatologists discount the theory that the disease ‘burns itself out’ but to an extent that is my experience.
    Yes, I guess I was depressed, lying in a hospital bed all those years ago. But since then it has by no means been all gloom and doom. However YMMV – that I readily concede.
    My very best wishes to you.
    George

    Reply
    • Tony Deaves

      My Late father had So much raidotherpy , he glowed in the dark , not say what it did me, as he told he couldn’t have anymore child. Then a long came after lots RD, I too have AS and some problem to me start of off by dad having RD. I am living with that now.

      Reply
  15. Stacey

    My father has AS and he was first diganosed at the age of 26, and the last two years his depression has got worse, espically now that he is getting closer to 50 and fearing that he may not be able to walk me down the ail, or play with the grand childeren in the future, also knowing he will have to rely on his family to take care of him when he is no longer able.
    The main reason I am wanting to leave a post is that because of my dad, I have took upon myself to study counsilling because there is no service and I hope to one day I to be able to help other who suffer and their familes to cope with the stress and the emotional termoil that comes with it. Together I know we can make that change.

    Reply
    • Endless Trax

      Thank you so much stacey for your comment. You have really hit the nail on the head.

      It is wonderful what you’re doing to help not just your father, but all of us.

      We can change things together, one day at a time. 🙂

      Reply
      • Stacey

        Thank you so much for your reply, I really do have high hopes because I believe it will help so many people and familes. I am also currently working on a paper on AS and the effects of holistic therapy in aiding mobility and help with pain mangement. I would love your opinion once I have compelted it and hopefully that too can help so many people. Once again thank you 🙂

        Reply
      • Tony Deaves

        Stacey,
        I have AS for a long time since the of about 13 even those my dad had it! it took them till I was in 30’s to say I have it. I am that bend over now. But by hook or by crook I will walk my girls down the ailsle.
        Depreesion goes with AS. I ran a help group for nearly 18years at my local hospital till we were kicked out. I saw many young men who had AS also had depression to. there are no service to help the young. All we can do is to help each other through the bad times, and say the sun will shine again in your life. we have all been to that dark place.but do get out of it. It may take you time. I also have bad dyslexia to, for which my schooling was a nightmare. So I have seen stuff form all place.

        Reply
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