Living with Ankylosing Spondylitis

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

 

I have Ankylosing Spondylitis. Don’t even try to pronounce that. We’ll stick with calling it A.S. Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease which initially attacks the lower spine but can go on to affect your eyes, legs, arms and chest.

Ankylosing Spondylitis is a painful, progressive, incurable disease that affects many people in many different ways. However, most of these people suffer chronic pain caused by a protein in the body, building bone over healthy, mobile joints often in the most important areas of the skeleton. It can make most physical activities difficult even with something as simple as sitting down, walking or even brushing your teeth!

The main features of this disease are chronic pain and fatigue. Fatigue is a particularly nasty part of having A.S. – as the disease makes your muscles work ten times harder than somebody without A.S. and as a result physical exhaustion is common. Flare ups can happen randomly without warning and are painful. The fatigue that comes with a flare is terrible and you are left with no energy and the feeling of having been trampled.

Most commonly the symptoms can be things like – if your back is stiff and hurts when you move, if it hurts to touch the sacroiliac joint (two points at the side of the top of your pelvis where it joins your spine), and if your back x-ray shows signs of this disease – you may suffer from A.S. You may also have pain and swelling in your eyes, lungs and heart valves.

Most doctors believe that A.S. is an autoimmune disease in which a person’s immunity is so stupid that it attacks and destroys the joints in their back, rather than just doing its job of protecting a person from infection. The treatment is with immune suppressants that may make you feel better, but increase your risk for infections and cancers and shorten your life.

Nobody really knows why you have this condition, but the overwhelming evidence is that you inherited your susceptibility from your parents and you got this condition from an infection or some other trauma such as giving birth. Many doctors do not recognise the symptoms in women because it has traditionally been known as a man’s disease. Also if you are negative for a gene called HLAB27 you may have difficulty in getting a diagnosis, although it is not essential to have this gene to receive a diagnosis.

I was finally diagnosed at the ripe old age of 65 when I had problems walking from one end of a supermarket to the other. As a result my life has changed dramatically. Within a few weeks I went from happily contemplating a retirement with my two dogs, playing at sheepherding with them and having regular overseas trips to Europe and the Middle East, and enjoying the pleasures of eating out, to being sick, disabled, frightened and walking with a stick or a walker.

I was terrified of becoming a grumpy old woman trying to hide the constant pain, the woman everyone feels sorry for and others don’t know how to approach because she might explode or collapse into a flood of tears Over the past 3 years I have watched myself transform from a healthy, active, invincible woman to a sick, grumpy, defeated, disabled, immobile and needy person.

I had always had a bad back but doctors did not diagnose this at a point where some of the treatments might have helped me. Along the way one or two doctors mentioned A.S. but then dismissed it because I was a woman and they thought of it as a man’s disease or because I was negative for the HLAB27 gene which is a marker, but not the only marker of the disease. If only they had investigated their suspicions.

Perhaps the most difficult part has been adjusting to the diagnosis and coming to terms with what this means for my life now.   The biggest shock for me was discovering that the medical profession has no pain killers guaranteed to ease pain, as a result I have had to get used to living with severely aching backs, legs and shoulders and not being able to get comfortable in any chair or bed.

You take a cocktail of drugs which have frightening side effects on your kidneys and liver leaving little that helps. You know that this is your reality for the result of your life. There is no cure and no hope of getting better, just having to manage the condition as best you can.

I am only too conscious of my frequent grunts and gasps of pain as I move and which expose me to others as someone in need, someone who is suffering.   It does not stop those who see me park in a disabled parking spot and feel free to tell me I am not entitled to park there because they can see nothing wrong.   They make me feel guilty and defensive. So do those who tell me that – at least I don’t have cancer. I cannot tell them that in one way I am jealous of those who have – some get better and even for those who die there is the relief of the pain being over. I am jealous of people I see in the street who can walk and run and yet don’t appreciate the gift that they have.

I am now on first name terms with many paramedics because I frequently fall over outside my house and cannot get up.   I no longer have anything to talk to my friends about except their frequent overseas trips. My side of the conversation is about constant visits to doctors, therapists and specialists as I spend the money I had planned to use on overseas trips on medical treatments, equipment or adjustments to my home.

I am single with no family here and I am very concerned about my future and with rising medical bills I am also very concerned about how I will manage financially.

It has been almost three years since I got the diagnosis but I am still struggling to accept in my head that I am no longer able bodied but officially disabled with no real hope of it ever improving. I was never really aware of the impact of living with a chronic illness has on your mental health and wellbeing – it is a very personal and difficult journey.