Arthritis: the illness that is often invisible

Cloghan native Siobhan Perner had just started a new life in the New York when she was struck down with a mystery illness at the age of 23 in 1989.

“I was involved in an accident,” Siobhan told the Westmeath Examiner.

"Three months after it [the accident], I went to bed one night fine, and the next morning I woke up and I couldn't straighten my leg.

“I was working for a doctor in the city at the time and he referred me to some of the hospitals he was affiliated with.

“I had numerous tests done and they all came back negative. The consultants said they knew there was something wrong with me but they just didn't know what it was.”

It took four years and countless visits to doctors and, Siobhan admits, some “quacks” before she was diagnosed with what she then viewed as the “older person's disease” of rheumatoid arthritis (RA).

“I was 27 at that stage. In the beginning I was so embarrassed that I had a 'disease' that I told no one only my close family and friends.

“It was an older person's disease to me. There was no internet at that stage to look up the effects. I thought I'm going to have pains in the joints rest of my life but the reality is if you don't get medication or treated straight away, your joints and your organs can be very badly damaged.

“The most important thing when you get your diagnosis or suspect that you have it, is to educate yourself on the disease, find out what your triggers are, as everyone's are different.”

Once diagnosed, Siobhan was put on medication, which worked reasonably well at keeping the worse symptoms of her condition at bay, but the four years waiting for a diagnosis had taken their toll on her body. Despite having received a much-coveted green card shortly after her diagnosis, she had a difficult decision to make.

“My knees, my hip, there were so many joints that were badly damaged. Any one who knows anything about New York knows that you have to be on top of your game working and living in the city.

“It's such a fast pace of life. The worse thing I found was changing [trains] at 42nd Street Station.

“You had all these trains coming into one station and if you don't get out of people's way they will walk across you. I wasn't quick enough for all this.

“Then in the evening time you are crammed into carriages like sardines in a can. I just found all this way too much.”

Siobhan came home to Westmeath in 1996, around a year after her life altering diagnosis.

She got a job with the Mullingar solicitor Dick Whelehan, but she wasn't in her new position long before she suffered her first major flare-up.

“I could not move my fingers, anything. Luckily I was staying with my sister that night. She was up all night, giving me drinks of water. I didn't know what going on.”

With her joints “literally grinding off one another”, Siobhan was put on steroids, which gave her back some mobility.

Despite being in her early 30s, an age when most people are at their physical peak, Siobhan had her two knees and a hip replaced within the space of nine months in 2000.

“They wanted to do my elbows and shoulders but I wouldn't let them. I said that I was going to try to live with them.”

The hip and knee replacements made a “huge difference” to Siobhan's quality of life, she says.

“Before I had them, I was looking at a wheelchair, I was that bad. It gave me my life back.”

In the intervening years Siobhan has tried to manage her condition as well as she could, despite its unpredictability.

“You could go to bed fine and the next day you could be in a flare-up. At the moment, I'm on biologic drugs to try to manage the arthritis, to stop it from flaring up. It's the inflammation that brings the deformities to the joints.”

“They are injections I have to give to myself every week. I have found one that I have great success with, thank God.”

Although her current medication is working relatively well, Siobhan suffers constant pain and fatigue.

“Many people take for granted getting up in the morning and doing whatever you want to do. I have to plan my day and my weeks. Especially with working, I had so many hospital and doctor appointments.

“If I hadn't got the RA, I would probably be still living in New York. I had my green card and my office job. I was nicely set up but it just wasn't viable for me.

“But if I hadn't come home I wouldn't have met my husband Helmut. It's a kind of double edged sword. We met here and he moved over here from Austria.”

“He has been a great help and support to me and has helped me through dark days.

Last year, Siobhan decided to stop working when Mr Whelehan retired. She says that the reason she was able to stay in the same job for so long was because of her employer's understanding of her condition, something she is very grateful for.

Like many RA sufferers, Siobhan also has a second autoimmune disease, in her case osteoarthritis, and there have also been a number of side effects from the medication she has taken over the years, including weight gain and memory loss.

“The effect of all those years not being controlled with medication has affected all the other joints.

"I will have to have surgery on my ankles at some point, Replacements are only good for 20 years, so I am looking at getting my knees and hip done again soon.

“My spine has been damaged with the arthritis and I'm waiting for an appointment in James's to get either a nerve burn or spinal block. I will also have to get surgery on both my feet, but I'm trying to put that off for as long as possible.

“You do get very down in yourself that's why it is so important to get involved with other people who suffer from the same illness.

“They can help you through the bad times. I got involved in the Westmeath branch of Arthritis Ireland about seven or eight years ago. It has been a Godsend. We have become quite active we have set up aqua-exercise classes in Bloomfield House Hotel and we'll have tea and a chat afterwards.

“We have mindful meditation classes going every second Wednesday in Ballinderry. It's important to keep active, if you're not working and even if you are, it's important to get involved.

“It's like any illness: unless you suffer from it or know someone who has it, you can't appreciate what they are going through.

“It's known as one of the invisible illnesses. You could see someone on the street who has it and you wouldn't know.”

A positive person by nature, Siobhan says that having the right attitude plays a huge part in maintaining a decent quality of life when suffering from a condition like RA.

“Surround yourself with people that you are confident in including your, GP and rheumatologist. Also very important is that your spouse or partner understands your disease and is supportive

“You have to have that positive attitude. There is no point in having that ‘why me?' attitude. There are a lot of sick people and if you just give up no one is going to knock on your door to get you going. You have to have a positive mental outlook on life.”