‘I spent most of my first year at university on steroids’

Amy Hopwood was just 17 years old when she started experiencing pain in her joints, but it took a further two years to get a diagnosis of autoimmune disease.

Speaking to the Wren Project about her experience, Amy said being a teenager and in pain meant she spent much of her first year at university on steroids and in and out of hospital appointments.

“I was 19 years old when I was first diagnosed,” she told us. 

“I had been struggling with pain in all my joints since I was 17, but it took a long time for the NHS to work out what was wrong with me. I spent much of my first year at university on steroids, with lots of hospital trips for x-rays, blood tests and consultant appointments.”

She explained: “In the end, it was the x-rays that led to my first diagnosis of rheumatoid arthritis. 

“They clearly showed the damage that was being done to my joints, even though the blood tests kept showing no problem (sero-negative arthritis).”

Amy, who is a musician and recently released a song, ‘All Shall Be Well’ which was influenced by her life with autoimmune disease, said one of the hardest challenges she has faced is dealing with further autoimmune disease diagnoses.

In fact, Amy’s initial diagnosis of rheumatoid arthritis was changed as her symptoms developed over time.

“Several years later, I developed palmar-plantar psoriasis on the palms of my hands and soles of my feet and so my diagnosis was changed to psoriatic arthritis,” she told us.

“I think one of the hardest things about autoimmune disease is the way you can finally manage to treat or get to grips with one condition and then have another pop up.” 

She continued: “In the years since that, a few more autoimmune diseases have been added to my collection (Morphea, Lichen Sclerosis, Fibromyalgia). Just within the last two weeks I’ve been told that I may also have Vasculitis and so I am waiting on blood test results to tell me how serious (or not) this might be.

“At times it requires immense levels of stoicism to keep on keeping on.”

Amy’s personal experience has led to her making some big changes in her own life. Making a career change as she approached 40 allowed her to focus on what she really wants to do.

“I think my illness has made me very conscious of the finite nature of life and the need to make sure you are doing what you really want to do. As far as possible and as soon as possible,” she told us.

“This attitude led me to step off the career ladder before I was 40, go part-time at work and focus on things that would make me less money, but would be more satisfying,” she explained.

“This has included running community singing projects for people with dementia, writing, performing and publishing my own music.”

Amy said she feels a greater sense of empathy since her diagnosis, and also, resilience.

“I strongly believe that almost anything is still possible… I think [my diagnoses] have made me more understanding of others and more empathetic,” she mused.

“I am now more willing to persevere when things are difficult.”

Considering others who, like Amy, may have had an autoimmune disease diagnosis when they too were very young, she said “don’t believe everything is over.”

“I strongly believe that almost anything is still possible,” she told us. “You do have to be careful about managing your energy and you do have to find creative solutions for your problems.”

In fact, Amy has taught herself to play a different guitar because of the effect arthritis has had on her hands and fingers. 

“I taught myself to play a tenor guitar (which has a slimmer neck and only four strings), [but it’s] much easier to get my hands around,” she explained. “It may not be a conventional guitar, but I’ve still been able to perform hundreds of gigs with it and record 3 albums!’

Amy has decided to donate 50 per cent of the sales of her song “All Shall Be Well” to the Wren Project, which she hopes will be “soothing to others in the same boat.”

Speaking about our charity, she said: “So much of what is available out there is funding medical advances, or sharing information about diseases, medicines and so on.

“There is very little focusing on the emotional and mental impact.”

Being so young at the time of diagnosis has led to some realisations as an adult for Amy.

She continued: “It has only just dawned on me that being diagnosed so young has really impacted the way I have handled my relationships with healthcare professionals.

“I was just 17 [when I was first diagnosed]. I was much more vulnerable, far from home, in a new city. I would regularly cry at appointments. 

“I have still felt quite afraid of the consultants; worried about whether or not they would believe me or would “force” me to take a medicine I didn’t want to. I have carried this same feeling of being powerless with me for 30 years!

“It is really important, and so much better, to feel that you are working together with your consultants as an informed adult, as an equal. 

“I’m sharing this in case it helps anyone else who has found themselves in the same muddle due to being diagnosed so young.”

You can hear Amy’s music by searching for Amy Hopwood on any streaming platforms or visiting www.amyhopwood.co.uk. You can hear the song “All Shall Be Well” here: https://linktr.ee/AllShallBeWell_AmyHopwood

Amy’s story is part of our #WrenVoices campaign, where our Wrens share their personal experience of life with autoimmune disease. Would you like to share your story in our Wren Voices campaign? Get in touch here.

Here at the Wren Project, we are here to support you. If you or someone you know could benefit from our free, one-to-one listening support sessions, please get in touch here for support.