Stephen Bender

THIS WEEK, THE annual campaign to raise awareness about arthritis will happen. World Arthritis Day is tomorrow, and even though we may be tired of ‘this world day’ and ‘that world day’, events like these do at least serve to highlight that the number of people who are suffering with this condition is not marginal.

Around 20% (one in five) of the population in Ireland is affected by arthritic diseases. The majority of those people have osteoarthritis, which is mainly caused by wear and tear. A small percentage have an inflammatory type, like rheumatoid or psoriatic arthritis. These are different to osteo in the sense that they are autoimmune diseases.

With autoimmune, the body’s own immune system attacks healthy tissues, which are then inflamed, swollen and painful and can lead to joint deformity and destruction. Both osteo and inflammatory arthritis are very debilitating. Other diseases like e.g. lupus, fibromyalgia, Sjögrens (a condition that brings dry eyes and dry mouth) or Raynaud’s (numbness in fingers and toes) also fall in this group.

The solution for osteoarthritis is exercise and weight control and sometimes joint replacement. For the inflammatory kind it’s not so simple. These are incurable progressive diseases. They are also known to cause a lot of complications (known as co-morbidities). And it doesn’t limit itself to joints alone. Very often other organs are involved as the inflammation is a body-wide issue.

My own experience

Living with arthritis is an emotional and psychological rollercoaster ride. Ups and downs, twists and turns.

I’m not here to give you the sanitised version I have often heard from medical professionals. I was told, when I was diagnosed with arthritis, that if I took a particular medication my life would be back to normal. Well, that’s not what happened.

I have psoriatic arthritis myself, so I speak from a position of experience. Most people don’t get diagnosed early as they put the list of symptoms down to stress, getting a bit older or overdoing things, which is very understandable. I have done it myself.

This can go on for a few years until it gets bad enough to go to the doctor about it. Unfortunately, a big opportunity is wasted because of that, as early and aggressive treatment has the best outcome in the long run.

Looking back, it started for me in 2011 when I woke up with a very painful, red and swollen right index finger (I know now this is called dactylitis, or sausage finger, and is most commonly linked to psoriatic arthritis). I wasn’t able to use my hand at all. The GP prescribed anti-inflammatories and within a few days I was fine again.

I had no problems for a few years until slowly I started to get more and more pains in my joints and my back. I just thought I was overdoing things a bit, as I was mad into mountaineering; I was gone every chance I got. But I got more and more pains and was very tired with it.

So, eventually I went to the GP, who listened to me and referred me to a rheumatologist. I was shocked when he gave suggested the consultant at all. I had just turned 50 and wasn’t ready for this at all (as if you ever can be really). I went to see the rheumatologist, who told me quite quickly that I sounded very much like I had psoriatic arthritis. This confused me, given psoriasis was never on my list of symptoms, or so I thought, but often had flaky skin here and there, which I put down to being dehydrated.

After the diagnosis, coming to terms with arthritis can take a long time. You have now a list of medications to take, every day, for the rest of your life. You most likely will have to learn to inject yourself as most anti-rheumatic medications are injectables. It is true that some of you will go in remission. But that is always a temporary phase. At some stage, it will rear its ugly head again.

You will have to manage fatigue, which can be impossible at times. This alone affects your life in a major way. Cancelled appointments and nights out, just to name but a few. You will have pain a lot or cannot do certain things any more because they cause too much pain and can set you back a few days or a week.

I was initially put on a drug called methotrexate, which didn’t do very much for me. Next I started with injections (biological medication) and high doses of prednisone. Over the years my body has found ways around the medications every time. The longest any of them worked was a year. And all along my illness kept getting worse. I got a few health scares due to the medications (especially infections) and ended up in hospital a few times.

Learning to live with it

Living with a condition like this, arthritis, has a huge psychological and emotional impact. I never could seem to get on top of it. A feeling of failure, both in life and in myself, is ever present. A mourning for a life I thought I would have, together with an anxiety about what the future might bring. You go through the five stages of acceptance several times, and back around again!

Eventually it came to a point where I wasn’t able to work any more, which brings a whole new set of emotions to deal with. I have worked since I was 17, and being finished after 40 years takes a bit of adjusting, to put it mildly.

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I’ve had two spinal surgeries now, and I am looking at hand surgery next, as it is becoming too painful to do certain things and keep my independence. I’m also just starting on my 14th injectable medication. Let’s see what this one does!

As the disease is dynamic, so is the associated disability that comes with it. One day you might need an aid to be able to get around, or aren’t able to do that at all. The next day you will feel OK enough to do things and without any aids. It really messes with your head and how you think other people will view you.

Here is where we come up against ableism. Some external, but most of all our own internal ableism. You’d be surprised how strong that can be.

As you can see, arthritis affects your whole life. Your work, relationships, how you care for your children, your outlook on life, how you see yourself and your body. And on top of that, you might even have to navigate the social welfare system. A challenge all of its own. 

You might have heard people coin the phrase: “I have arthritis, but arthritis doesn’t have me”. Well, sometimes that might be true, but there are times when it feels arthritis does have you, all of you! What you need to remember is that that’s OK to feel and is by no means a failure on your part.

But you don’t have to do this alone. There is help out there.

Arthritis Ireland is an active and supportive organisation. They have a very informative website with lots of information about the different types of arthritis. There is help out there for you, whatever the stage of your journey. All you need to do is ask for that help (and I know that can be a big step). So, reach out for that help when you can, use your aids when you need them and find things that you are able for that make your life worth living.

Stephen Bender lives in the West of Ireland.