Forced to give up her studies, take part-time employment and rely heavily on her husband for everyday tasks, such as dressing herself, Aoife Weller tells our reporter what it’s like living day-to-day with rheumatoid arthritis
When I called to interview Aoife Weller in the middle of the day, she was in bed; something not unusual for the 28-year-old, who was diagnosed with rheumatoid arthritis (RA) at the age of 18.
“Although people think of arthritis as one disease that affects older people it is really a variety of conditions which affect a variety of people at different ages,” explains Grainne O’Leary, Arthritis Ireland’s head of service development. “We have children as young as one or two years of age with arthritis.”
For Aoife, life went from normal to agonising overnight.
Now married to Alan and living in Mullingar Co Westmeath, where, thanks to effective medication she’s able to work part-time in administration, Aoife recalls how, just two weeks after her 18th birthday, she woke up one morning unable to move.
“It literally came on overnight. It was agonising to move and from my toes to my neck. Every joint in my body was angry and swollen and painful,” says Aoife.
After three weeks in hospital the pain and swelling lessened. However, it later returned and eventually her condition was diagnosed as rheumatoid arthritis.
At that time Aoife had just started college where she was studying for an Arts degree. She eventually had to first give up her studies, and then a variety of jobs, because of the overwhelming fatigue which accompanies the condition and which, according to Aoife “is worse than the pain and swelling combined”.
“I’m currently working part-time but each day after I work I have to have a lie-in,” she explains.
There is no history of the disease in her family and doctors have told her arthritis may have been triggered by a viral infection – Aoife had a bout of tonsillitis a few months before the onset of the arthritis.
Husband Alan is a huge support. He collects her from work, helps out with the chores and assists her in dressing when she is in pain.
“Rheumatoid arthritis dominates my life,” she says simply.
Over the past five years Aoife has benefited from effective medication which, although it has allowed her to engage in part-time employment, does not completely eliminate the symptoms which will come without warning: “I have flares and hit a wall, and my joints swell up,” she says.
As a result she finds it impossible to plan ahead and has been forced to learn how to effectively pace herself. The condition is life-long and unpredictable.
“I could get worse – I could be in a wheelchair – or it could go away,” she says, adding that Arthritis Ireland has been a great support. She completed the organisation’s Living Well with Arthritis programme, which she found extremely helpful.
The organisation also offers a strong social outlet which helps sufferers combat the inevitable feelings of isolation – she has a good social network through AI, and volunteers with the group.
The term arthritis actually covers a multitude of conditions, explains Dr Gerry Wilson, Professor of Rheumatology UCD, consultant rheumatologist at the Mater and St Vincent’s Hospitals, and on the board of Arthritis Ireland.
In fact, he explains there are more than 100 different types of the disease, which affects nearly a million people in Ireland, and is categorised into inflammatory and non-inflammatory conditions.
Inflammatory-driven arthritis includes conditions like lupus, RA, ankylosing spondylitis or scleroderma while the most common form of non-inflammatory arthritis is osteoarthritis.
“There is a genetic factor to inflammatory-driven conditions but we also suspect that there may be something in the environment, either exposure to pollution or even smoking or being overweight can increase the severe of inflammation. It is here that the immune system and genetics play a part,” says Professor Wilson.
The other main type of inflammatory arthritis is caused when uric crystals gather in the joints – these occur when an excess of uric acid in the tissues transform into crystals – causing conditions like gout.
“These conditions can all occur at any stage in life, including in very young children. People don’t always realise this,” says Professor Wilson, who explains that rheumatoid arthritis for example, can affect anyone from infancy onwards – it affects some 50,000 people in Ireland alone.
The second category of arthritis is non-inflammatory.
“Probably the most common type of this is osteoarthritis,” he says, adding that while experts believe that there is probably a genetic cause to this condition, it is also very age-related.
“However it can occur in young people. There are possible links to environmental factors such as injury to the joints, for example a sports injury, or being overweight,” he explains, adding that damage caused by RA can also lead to osteoarthritis.
The good news is that treatment for most types of inflammatory arthritis treatments has been revolutionised over the last 20 years – but the bad news is, it’s cripplingly expensive, costing up to €14,000 annually per patient.
Three of the world’s top 10 selling drugs are for arthritis, says Professor Wilson.
“However, there are signs that the cost of these drugs will fall and it would be a very welcome development if they did,” he says.
Public awareness of the variety of impact of the various arthritic conditions is changing, says Grainne O’Leary, head of service development at Arthritis Ireland.
However, she says, there is still a belief that it usually only affects older people. Yet she points out, there are approximately 1,200 children under the age of 16 in Ireland with arthritis.
It can come as a shock to families – after all, arthritis is not necessarily the first thing a mother will think of when a child complains of joint pain or appears reluctant to engage in running around.
“This is a long term and unpredictable condition,” she says. “Children coming into adolescence may try to hide the fact that they have arthritis. They don’t think their friends will understand because they may be aware that people think children don’t get arthritis.”
Similarly people in their 20s may not reveal the fact that they have arthritis when they are in college or starting a new job.
“They may fear it might be seen as a black mark against them,” she says, adding that the perception is that if you inform employers or potential employers you might be out of work as a result of arthritis it could be viewed “negatively”.
“The fatigue can come as a shock. There is a never-ending feeling of being incredibly tired and that can make day-to-day functioning very difficult for people.
“We are working to increase awareness that this is a serious condition, but the message for people with arthritis is to stay a healthy weight, eat a healthy, well-balanced diet, and exercise,” says O’Leary.
“Exercise is one of the best things you can do for arthritis. Staying physically active is great if you have the condition, but it can also prevent the onset of certain conditions such as osteoarthritis.”
How to manage your arthritis
Take control of your own health
According to Laura Hickey, youth and family officer with Arthritis Ireland: “Arthritis is a lifelong condition. It’s really important that you are able to approach your consultant and not be afraid to ask for help. You need to find out about your condition and don’t delay in getting treatment. Having a good relationship with your doctor really helps. We do a lot of self-management courses so matter what age you are, you can learn what helps manage your condition. It’s one of the best things you can do to learn to be your own advocate,” says Hickey.
Know about your treatment options
Many people with arthritis find that having surgery brings about a dramatic reduction in their pain, and an improvement in their mobility and quality of life. A wide range of types of surgery can help people with arthritis, from small procedures (such as operations to remove cysts or nodules), to major surgery (which includes total joint replacement).
Physiotherapy also plays an important role in treating arthritis by providing you with improved mobility, strength and flexibility.
If you are experiencing difficulty with day-to-day tasks like washing, dressing, cooking and cleaning you may benefit from visiting an occupational therapist.
“Keeping your weight down has so many health benefits including preventing cancer and diabetes,” says Professor of Rheumatology at Trinity College Dublin and Consultant Rheumatologist at Tallaght Hospital David Kane. “Weight is also going to put a strain on the joints of the lower limbs so we try to encourage people with arthritis to exercise up to four times a week.”
Take your Medication as prescribed
Missing a dose of your arthritis medication will mean that there is a gap in your arthritis pain control. It’s easy to skip a dose if you are feeling good at any given moment, but you might pay later in joint pain and aching knees. Whether your medications are prescription or over-the-counter, you should take them exactly as your doctor directed.
“With arthritis you can get really fatigued so it’s a good idea to break down things you have to get done,” says Laura Hickey from Arthritis Ireland. “For example, if you have a wedding at the weekend and you’re going to be busy in work next week, take it easy in the run up to the wedding. Break down the tasks you must do.”
Make food choices that count
You should aim to eat a variety of foods, eat a morning meal and eat regularly, eat a minimum of five fruits and vegetables a day and choose foods lower in fat.
Learn about equipment
Laura Hickey says there are a variety of aids and equipment that aim to protect joints by reducing the effort you have to put in. Examples of these include utensils that allow for easier gripping, equipment to make showering and dressing easier, and tools to help with opening jars or bottles or turning on taps.