The loneliness of living with lupus

Lupus sufferer Linda Trotter has to take 11 tablets a day
Lupus sufferer Linda Trotter has to take 11 tablets a day

LINDA Trotter is on a mission – the 38-year-old wants more people to know about the debilitating condition lupus.

Linda was diagnosed with lupus when she was just 12 years old and has spent the past 26 years trying to cope with the illness.

Linda, who is originally from Holland but has lived on the Fylde coast with husband Shane for four years, has experienced problems with her major organs, skin, joints and sight and has been in and out of hospital countless times over the years.

But since moving to the Fylde coast, she has managed to find help through the local branch of the charity and support group Lupus UK.

Lupus is an auto-immune disease which can affect virtually any system in the body.

It is almost like a ‘self-allergy’ – where the body attacks its own cells and tissues, causing inflammation, pain, and possible organ damage.

But many sufferers seem normal in their appearance and say there is little understanding among the general public of what the condition involves.

Few people could even tell someone had lupus – yet at its worst the condition can make sufferers very ill indeed.

Linda – who also had cancer of the uterus and ovaries – wants to raise awareness of lupus, following last week’s World Lupus Day.

She said: “Lots of people don’t understand the condition lupus.

“I have to take a lot of medication, I have to take 11 tablets a day.

“I want a lot more people to know about the condition, to raise awareness if it.

“It can be very lonely having lupus because your friends don’t understand you can’t always go out or do what you want.

“People don’t understand, especially as a lot of the time, you look perfectly well.

“I have lots of problems with my organs and my skin, I have been in and out of hospital lots of times.

“My sight is very poor, I have had to have operations on my eyes.

“My joints are also not very good and I’ve had to have surgery on my thumb.

“I get by with the help and support of friends and the Lupus UK support club has been really good, very friendly and helpful.”

Since joining the group, Linda – who makes intricate home-made greetings cards – has helped out with fund raising, including helping at a table top sale and donating items for sale.

Linda says she gets great satisfaction from being able to help the group which has helped her.

Val Wilson, secretary of the North West Lupus Groups, who lives in Staining, said: “There is a saying – systemic lupus erythematosus is hard to say, but harder to live with.

“A lot of sufferers look well and it’s difficult for people to understand the condition because of that.

“But we are keen to let people know that there is help there and research is being carried out. “Linda came to us through Lupus Europe and it can be of huge benefit to sufferers and their families.”

For more information about lupus, log on to www. lupusuk.org.uk.