Autoimmune diseases – such as Ankylosing Spondylitis (AS) – are often referred to as invisible illnesses. This is because we often look ‘fine’ on the outside, but on the inside we are in significant pain and discomfort. As a way of coping we often develop our own ‘poker face’. Do you ever feel that the more you make yourself look ‘normal’ the better you feel about yourself? I’m sure it’s not just me….
We all know how difficult it can be to come to terms with a diagnosis of a life changing progressive disease, which can often lead to depression and anxiety. I’ve written before about dealing with a diagnosis of AS. But what then? What happens after the acceptance, and the grief? How do you learn to live with it, how do you learn to ‘play the hand you are dealt’?
In poker it’s not always the person with the best hand that wins. To be good at poker you need to learn to get the most out of the hand you’re dealt. Mostly this includes winning lots of small pots, with the occasional big pot win. And at the risk of loosing a serious amount of street cred; to quote Kenny Rogers:
You’ve got to know when to hold ’em
Know when to fold ’em
Know when to walk away
Know when to run
As someone with a chronic illness there are things we can learn from poker players. Often having a chronic illnesses — like AS — can often feel like a battle, but like poker players we need to learn how to manage our hand (condition), so that we can get the most from it. There will be days when we have to fold them, accept defeat and move on gracefully. And I’ve certainly had days when I’ve had to bluff my way to the end. But you won’t be able to go ‘all-in’ every day and come out on top. Accept the small wins as just that, a win! Celebrate them as much as you would a big win. But unlike Mr Rogers, don’t walk / run away. Giving up entirely is not an option. Your AS isn’t going anywhere, and neither should you. You’ve got to be in the hand to win it after all.
Below are a few tips and pieces of advise which will help you play the hand you’re dealt, and to rack up those small (and big) wins.
It goes without saying that in order to help you manage your AS you need to be on the correct medication. There are many. And what is appropriate for someone else may not be appropriate for you. It is vital that you make sure you discuss your treatment options with your Rheumatologist, even if the answer is that there are no new treatments available. Knowing where you stand will help you with planning other management strategies.
Exercise is still the most important thing you can do to help you manage your AS. There are some of us that can run marathons (no not me), but then there are others that can barely walk to the end of the drive. Doing appropriate exercise is imperative. Finding your limits isn’t always easy, but trained physiotherapists are a great help. If you’re living the UK, then the NASS physio sessions can be a god send.
Many have had to change their job, and even professions, in order to make their working life more manageable because of their AS. Unfortunately not all employers are so sympathetic towards AS; they may never have heard of it before. But if you live in the UK you may well be covered under the Equality Act of 2010. This means that employers have an obligation to make ‘reasonable adjustments’ to support you in the work place. If your employer has never heard of AS, or do not know how they can help you, then there is a page in the AS guidebook just for them!
Attempting to prevent some of the things that cause stress will help you manage your condition, both physically, and mentally. Using relaxation techniques and meditation can help, but so can doing things that you already enjoy; such as fishing, singing, playing an instrument, or painting. If it is something you are passionate about or enjoy doing, it’s going to take your mind of the negative things, and help relax you.
Talking to others about things you are finding difficult will also help you plan your management strategies. This might be your Rheumatolgist or Councillor, but don’t under-estimate the help and support you can get from patient forums or AS helplines.
Knowing when to ask for help can be the hardest thing to do at times. But we all need help at some point. Asking for help is not the same as accepting defeat, in fact it’s the opposite. You will only ‘win the hand’ if you are in control of it. Identifying the signs of your stress and the triggers of your anxieties will help you gain some control. Often others — especially our partners — are better at identifying these than we are. Listen to them, talk to them, and include them in your plans, and let them help you manage your AS.
How do you manage your stress and anxieties?
What are your top tips for helping people win the hand? Either metaphorically or literally😉.