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Rebecca Wynne has spent 25 years battling a painful condition which has often left her bedbound.

She was just 11-years-old when she was diagnosed with arthritis - a condition which largely affects adults in their 40s and upwards.

Now 35, she is still facing the daily challenge that arthritis brings. It became so bad that she couldn't even hold her kids when they were born.

When she tells people about her arthritis, the mum-of-two from Saffron Walden, Essex, is often faced with the look of shock in people's faces who simply cannot believe someone so young could have it.

This is the story from her diagnosis through to the struggles she has faced in her adult life.

Rebecca was 11 when she started suffering with pain and swelling in her joints.

Her parents took her to the GP and it was there that she was diagnosed with juvenile idiopathic arthritis.

She said: "It was a real shock. No one in my family had ever had it.

"It was just before I started secondary school.

"I wasn't a confident kid, so I didn't want anything that was going to make me stand out."

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Her diagnosis meant she wasn't allowed to take part in PE lessons at school and she had to wear trainers rather than less comfortable school shoes.

At the time, she says didn't really notice the impact it had on her. But as an adult, she has been able to fully take stock on the debilitating effect it's had on her life.

"I have had to bend my life around it," she said. "Of course to me it's not weird at all, it's just my life.

"Pretty much everyone I meet that finds out can't believe that I have arthritis. That has been the challenge since I was 11."

Her arthritis affects every single joint in her body, though some hurt more than others.

But it was after she gave birth to her second child, Lottie, three years ago that Rebecca's hips became really painful.

She already had one daughter, Emilia - who is now five - so had no reason to believe having another baby would make her condition worse.

But after Lottie came along, Rebecca couldn't bend down and was in constant agony, so much so that she was left unable to pick up her children.

It was heartbreaking for her and left her feeling like she couldn't fulfill her duties as a mother.

She added: "This has been the hardest part for me. After I had Lottie, the arthritis seemed to take control of my life.

"I couldn't take care of my children. It felt like all of a sudden I couldn't be the mum I wanted to be, I couldn't pick them off or doing anything for them.

"I could barely leave the house, not being able to care for my children was heartbreaking."

Being so young, Rebecca says her girls can't understand what is happening to their mum, but says they are amazing.

"They are very demanding, as young children are, but they don't understand what I am really suffering with," she said.

"Lottie has had to deal with this all as a toddler.

"It's different when it is just affecting you but as a parent it becomes a burden on your children.

"I feel a guilt that never goes away."

Rebecca also never thought she would have to depend so much on someone like she has with her husband, Tom.

Rebecca explained: "I have always been fiercely independent.

"All of a sudden I was being cared for by my husband.

"Perhaps I was a bit naive to live day by day, I hadn't considered how it was damaging my joints.

"That day came and it was awful."

Rebecca was offered a double hip replacement, a huge operation for someone to have so young.

The operation has dramatically improved her quality of life and she is no longer in the constant pain she once was.

Rebecca said: "It ate away at my hips so they had to be replaced.

"My hips are great now, they are my best joint.

"The hip replacement has been life changing, it was amazing."

Rebecca also suffers with her knees and has had to go to hospital to have them drained more times that she can remember.

She explained: "I have severe damage in my feet and ankles, I can't walk very far.

"Some days it is bearable but others it is horrendous.

"I am in pain every day.

"It feels like a throbbing, like my joints are on fire."

"The damage gets worse throughout the day.

"I'm always in some sort of pain, the daily pain from my feet and ankles is a joke."

Unfortunately there is not a common operation available for her feet like her hip surgery.

For now, Rebecca is focusing on controlling the pain.

The inflammatory part of arthritis is what tends to affect Rebecca in the mornings.

She wakes up stiff, puffy and in pain, but her medication is very effective at calming it down.

As the day goes on the joint pain only gets worse.

But one of the hardest parts about her condition isn't the pain it causes - it's the lack of understanding.

Although arthritis is very well known, and quite common, people aren't used to hearing about it in a young person.

However, two thirds of the 10 million people in the UK with arthritis are aged under 65.

She's even had people accuse her of lying about her condition during her commute to and from work.

She said: "I used to commute to work in London, that was hell.

"At that time I looked normal, but I was in so much pain.

"There were never any seats on the train home.

"I'm not someone who shouts about my condition, but sometimes I had to as I needed to sit down.

"Some of those times where I would speak up I would have people tell me that I couldn't have arthritis and that I was lying."

The lack of understanding of her illness also caused problems in Rebecca's work.

She is an architect and says that past employers have been good to her, though she doesn't think they fully understand what she goes through.

Rebecca explained: "It's difficult for people to understand. One day I will seem okay as it's under control, but the next I will be bed-ridden.

"I don't like having to answer for my condition.

"It feels like you are making excuses all of the time, when you just can't physically get out of bed."

For the past few years, Rebecca has been self-employed, meaning she can manage her work and her illness alongside each other.

Taking the step to work for herself was a big leap, but Rebecca says it was what she needed to do.

She said: "I can now take on as much work as I can manage.

"Working for myself was the right decision for me by far."

Whilst the coronavirus pandemic continues, we are all being told to stay at home where we can.

For Rebecca, Covid-19 is more even more serious.

The drugs she takes for her arthritis are immuno-suppressing, meaning she is more at risk of contracting the virus because of her weakened immune system.

She and her family are having to isolate together to protect her health and means none of them can leave the house.

Rebecca said: "The fear is huge. Being told that you are extremely vulnerable is horrible.

"It means my children can't go out, that's particularly hard.

"I feel guilty about it."

Her day-to-day life hasn't changed much, as she is often trapped indoors because of her illness.

The big difference is that her children are at home with her all of the time.

She said: "I feel lucky that I have this time with my children, but for us this can't be a short-term thing.

"The girls aren't going to be able to go to school for a long time.

"I'm having to take it day by day.

"The nature of my disease is that I have stress-related flare ups so I try to not let it get to me.

"I stay as positive as I can otherwise I could turn bitter."

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Rebecca has now joined forces with the charity Versus Arthritis to help raise awareness for arthritis.

Their latest campaign It's not alright, it's arthritis aims to widen people's understanding that arthritis can affect anyone.

The charity are keen to get rid of the stigma that arthritis is just 'wear and tear'.

Rebecca said: "It feels amazing to have someone in your corner fighting for awareness.

"It's just a relief to know they are there.

"So many people will be turning to them right now as they they don't want to add strain to their GP.

"The charity will also be under pressure like never before, so it's so important that the public understand their work."

A spokesperson for Versus Arthritis said: "We just want to raise awareness and dispel the myth that it's part of aging.

"We often run campaigns but this one is about asking the public to pledge support for those living with arthritis.

Continue reading here:
Essex mum's 25-year battle with arthritis which became so bad she couldn't hold her children - Essex Live

This entry was posted on May 7, 2020 at 7:46 am and is filed under Arthritis. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |