‘Arthritis ruined my childhood. Helping others is my therapy’

Rummaging through her clothes, she packed one piece of clothing after another neatly into a suitcase.

Closing the lid, she quickly checked that she had everything she needed – she wasn’t going on holiday after all.

With a deep breath and her worldly belongings in tow, she slipped out the door of her family home in Drylaw . . . for good.

There had been no row with her mum, no playing truant from school and no boyfriend that she desperately wanted to live with.

On that day in October 2002, the 16-year-old wasn’t just running away from home, she was running away from the condition that had plagued her life since the age of two – rheumatoid arthritis.

More specifically, she was running away from the gruelling treatment that she had endured since she was a toddler, most of which caused severe side-effects including migraines and nausea.

It was a desperate attempt to avoid her family’s pleas to return to hospital for further treatment.

“I was constantly being poked and prodded by doctors and needles, and there were endless tests and examinations,” Denise recalls.

“I was terrified of my illness. My memories of hospital treatment during childhood are still my nightmares.

“It was a necessity to take medicine twice a day and I had to wear leg splints overnight.”

Despite leaving home so abruptly, Denise still saw her mum regularly, who she praises with doing “the most amazing job” of bringing her up.

But even the woman she described as “her rock” couldn’t convince Denise to continue her treatment, which she stopped for almost ten years.

It wasn’t until Denise, now 25, finally plucked up the courage to seek help from charity Arthritis Care in 2010, that she decided to return to hospital the following year for the medical treatment she desperately needs.

She has since been selected as the face of Arthritis Care’s new fundraising campaign, which has seen her story and photograph featured on an appeal letter for funding – which Denise helped to write – sent to thousands of residents in England, Wales and Northern Ireland.

Her involvement with the direct mail campaign, which is set to launch in Scotland next month, has already resulted in £34,000 worth of donations for the charity.

Denise, a third-year public relations and media student at Queen Margaret University, says: “I really wanted to help other people like me.

“When I first agreed to be the face of the new campaign, I thought it was fantastic, but then half-way through I thought, ‘wait a minute’.

“I had gone from not telling anybody anything for ten years to all of a sudden telling everybody so publicly, and I thought, ‘is this the right thing to be doing?’

“But I think it is, because if more people like me can speak up, it will raise awareness.”

Denise, who lives in Leith, adds: “The biggest thing is the stigma of arthritis being an old person’s disease, but it’s not.

“If I had a pound for every time someone has said that their gran has arthritis, I would be a very rich young lady.”

Denise raises a valid point. There are around 27,000 people under the age of 25 with arthritis in the UK, and 12,000 children currently living with the disease.

But the statistics offer little comfort to the people struggling to cope with the debilitating condition day in, day out.

For Denise, it means waking up to find she can’t walk at all some days. Even on a “good day”, she has a limp, and simple tasks like making a cup of tea or opening a door are a struggle due to chronic swelling, pain and stiffness in her hands.

Denise, whose hands, knees and ankles are particularly affected by the disease, says: “It is excruciating pain and it doesn’t go away – it’s there constantly. You learn to live with it but it takes its toll.

“It can take an hour to find the energy to get ready in the morning and by mid-afternoon, you’re so tired. It feels like you’ve put on 50 stone overnight and you’re carrying around this extra weight.”

As a child, Denise remembers being unable to take part in activities like ice skating or cycling with her friends. Among the memories of her numerous visits to the hospital or doctors, one is particularly poignant.

“When I was five years old the doctor told my mum if I didn’t take my medication, I would be in a wheelchair by the time I was 16,” she explains.

“That kind of resonated with me and I’ve carried that comment with me over the years. It really hurt me.”

It was memories like this one that intensified Denise’s fear of hospitals and medical treatment, and contributed to her leaving home years later.

Another came at the age of 14 as she sat nervously in a waiting room at the Western General Hospital, listening for her name to be called.

She was surrounded by elderly patients in wheelchairs, many of whom were attached to drips.

It’s an image that still haunts her to this day, more than a decade later, mainly because it offered a grim glimpse of what her own future may hold.

“It was terrifying, it’s the most scary thing I have ever had to deal with,” she recalls.

“I was only 14 years old but I was in an adult clinic at the rheumatology department. There were people in wheelchairs with drips hanging from them. The thought of that happening to me terrified me to no end. I couldn’t handle it.”

The hospital visit in 2000 had such a profound effect on Edinburgh-born Denise that it was the last time she sought medical treatment – until 2011.

She hid her condition from friends, employers and work colleagues for the best part of 10 years after running away from home in 2002.

She moved in with friends in Edinburgh for the first six months before getting her own council flat in Wester Hailes in November 2003, where she lived alone for eight years before moving to her current flat on Easter Road.

“I made a point of doing everything I could to avoid medication and telling people the truth about my rheumatoid arthritis,” she said.

“I was so frightened of having to go back to hospital and to go through blood tests and the poking and prodding, and I still had the doctor’s comments about ending up in a wheelchair at the back of my mind.

“I wanted to pretend that I didn’t have anything wrong with me and I was like everybody else, so I just ignored it.”

After attending Arthritis Care’s self-management workshops called Joint Potential in March 2010, which help young people with arthritis to manage their health, Denise decided to return to the Western General last year to seek the medical attention she needs.

Denise, who completed an HNC in advertising and public relations at Stevenson College in 2008, has also created a video blog called Deni’s Rheum on the Arthritis Care Connect Scotland website, where she shares her experiences of living with rheumatoid arthritis. And the former Broughton High School pupil is determined to complete her honours degree at Queen Margaret and hopes to work in PR within the voluntary sector after graduating.

“Even now it takes me about an hour to build up the courage to go to an appointment. I’m absolutely terrified. But I don’t want to hide forever; I want to abolish those fears that make me feel like I should be alone and deal with my rheumatoid arthritis solo.”

BODY GOES TO WAR

RHEUMATOID arthritis is an inflammatory form of arthritis where the immune system attacks the joints.

It causes pain and swelling in the joints. Hands, feet and wrists are commonly affected, but it can also damage other parts of the body.

It is a chronic, progressive and disabling auto-immune disease that can cause severe disability and ultimately affects a person’s ability to carry out everyday tasks.

The disease can progress very rapidly, causing swelling and damaging cartilage and bone around the joints.

It is a systemic disease which means that it can affect the whole body and internal organs such as the lungs, heart and eyes, although this is not the case for everyone with rheumatoid arthritis.

Rheumatoid arthritis affects approximately three times more women than men and onset is generally between 40 and 60 years of age, although it can occur at any age.

Currently, rheumatoid arthritis cannot be prevented as the exact trigger of the condition is unknown. Although viruses and bacteria may be involved, research is not yet conclusive.

There is also no known cure for rheumatoid arthritis.

However, the good news is that the prognosis today, if diagnosed and treated early, is significantly better than it was 20 to 30 years ago and many people have a much better quality of life despite having rheumatoid arthritis.

The symptoms of rheumatoid arthritis usually vary over time. Sometimes, symptoms only cause mild discomfort. At other times, they can be very painful, making it difficult to move around and do everyday tasks.

• For more information see www.arthritis-care-connect.org.uk/scotland