Joel’s post is the second in our new guest blog series “Let’s Talk About…“ where other people have a platform to share their experiences and raise awareness of the conditions, illnesses etc. they suffer from.
Tell us a little bit about yourself?
Hey! My name is Joel and I am from Norwich, England.
I started blogging in 2019 after I struggled to find ways to process a deterioration in my health. My family and doctors encouraged me to be more open about my challenges after hiding it from employers and friends for years and suggested that writing would help. Apart from writing poetry and songs when I was younger, I had never considered writing, especially for an audience and I must admit, I found the whole idea rather daunting.
I am still early on in my blogging journey but I’ve met some amazing people, have learnt an awful lot and have found something new to be passionate about at a time that has been difficult for me.
Can you tell us about the conditions that affect you?
Unfortunately, I’m an unwilling collector of autoimmune conditions. I was first diagnosed with arthritis when I was around 12 or 13 but this had onset a few years before when I was just a child (arthritis isn’t something they jump to when you first present with joint pain at that age). I was then told I had ankylosing spondylitis at the age of 14 and then later psoriatic arthritis in my mid-20s. I was in a wheelchair and on crutches as teenager, lucky to have a period of remission from the ages of 18 to around my mid-20s – which is when I then flared again with what turned out to be psoriatic arthritis.
What symptoms are common with these conditions?
It’s changed a lot over the years. When I was little it was my hips and knees, my teenage years my spine, neck and knees and in my 20’s my psoriasis, liver, heels, feet, neck and hands. There’s obviously an unwanted trend there in that the older I get; the more areas are impacted and that is something I have always struggled to adjust to – just as you think you know what you are fighting, the goalposts move.
I’m lucky that I don’t get massive amounts of swelling, it’s mostly pain and stiffness, particularly first thing in the morning and towards the end of the day. My arthritis has never shown in blood tests or particularly obviously on x-rays (particularly when I was younger and the damage was relatively new) so although that’s great in terms of impact on my body – it’s frustrating as diagnosis’s tend to be a long time coming as changes to my condition have to be observed (normally for a year or more) to determine the nature of the disease progression and what to label it.
What impact do these conditions have on your life?
At the age of 35 my arthritis has returned with a bang from the start of 2019. I now have chronic daily pain for the first time since I was a teenager and am beginning to lose movement in joints such as my hands, wrists and neck. I also struggle with the mental health side of living with these conditions. I give myself a hard time about it on occasion but I’d challenge anyone to live in constant pain, unpredictable varying limitation and broken sleep and not struggle with depression or low mood occasionally.
It’s strange, although I’ve been here before as a child and in some respects a worse position in terms of mobility, I seem to be struggling to adapt to the change more this time around. Perhaps it’s because I had a good run where I was able to play sport and with a bit of management and common sense, participate in any activity I so wished for a few years or maybe it’s because I become a dad in 2019 that I look more to the future – I’m certainly not adjusting and accepting the changing circumstances as much as I once did.
Arthritis is often overlooked or labelled as ‘an old person’s disease’ but it’s extremely painful, relentless and progressive. It not only disrupts my life but those loved ones around me as my ability varies on a weekly basis, my constant pain makes me short on patience at times and plans can often be scrapped on the morning of the event as who knows what condition I’m going to wake up in at the moment.
Would you say that these conditions have changed you as a person? If so, please explain?
My arthritis has certainly made who I am today. Although I didn’t really see it at the time, I was hugely disadvantaged as a child; missing whole years off of school, home schooling, isolation and not being able to join in with what my friends were doing. However, I would say that it’s those experiences that have made me so determined, stubborn, led me to forge a career in managing and supporting people in schools and the NHS and try a wide range of things over the years, when I can.
I would say that the last year’s events (which you can read about on my blog) have changed me in a more negative way, however. Perhaps it’s age, perhaps it’s becoming a dad and worrying more about the future or maybe it’s not being as resilient as I once was after years of aches and pains but I am starting to feel more hard done-by, less positive and battle worn and was one of the reasons I started my blog, to find my voice again and raise awareness.
Lastly, what advice would you give to someone who has just been diagnosed with the same condition?
- Allow yourself time to process it
- It’s ok to have a ‘feeling sorry for yourself day’ (I try to limit myself to one per month during the good spells, one per week during a flare)
- Talk to others in the same position but make sure they are comparable – for example, I was sent to support groups or treatment such as hydrotherapy with the majority of people being 65+ when I was just 13 or 14 years old. This was the last thing I needed at the time as all I could think about was how it was a window in to the future and they couldn’t relate to how I was feeling as a teenager with arthritis.
- Ask questions of your health professionals, lots of questions! The NHS is under enormous strain and not everything (like hydro, traditional physio, pain management support etc.) is offered up front compared to when I was younger. Don’t be afraid to tell them how you’re feeling and how you think you need help.
- Every one’s journeys are different, don’t compare, embrace your own path and focus on what you can do, not what you can’t – after all, with arthritis, you could wake up next week with a whole different set of challenges or even a period of remission!
I would like to thank Joel for sharing his story with Me vs Arthritis. If you would like to read more from Joel – stay up to date with him on Facebook, Twitter, Instagram or via joelvsarthritis.co.uk.