This story was told to CreakyJoints by Will Taylor, a 53-year-old husband and father on medical leave from his work as a business manager in a special needs school in the UK. Will tells his diagnosis story and shares his experience with the mental toll of chronic disability and how he’s moving forward.
I’ve always been a big chap. In my earlier life, I really enjoyed doing martial arts, playing squash two or three times a week, and going to the gym every day. I was consistent with these types of things up until my early forties when work and life got in the way, and I became more infrequent with my physical activities.
Around age 42, my flexibility seemed to start really slipping. I used to be able to do all the above-the-head kicks in martial arts, but no longer could. I figured it was because I wasn’t practicing as regularly anymore, and I’d just let myself go. But I noticed that I was hurting more after other types of exercise, too. I wasn’t overly concerned. I carried on and assumed my aches and pains were due to my bigger size and older age.
Then when I was 47, I decided to recommit myself to a regular fitness routine. I spent two weeks doing sessions on my elliptical machine and ended up with really bad pains in my shins. I thought I must have given myself shin splints with the exercise, so I gave them a few weeks to heal. But six weeks later, they still weren’t getting better.
“Everyone At Midlife Gets Arthritis”
I went to see my general practitioner, who sent me for X-rays. Right away upon reading them they diagnosed me with osteoarthritis of the hips. It wasn’t a condition on my radar — I had no experience with arthritis, personally or in my family. But the doctors acted like it wasn’t anything to worry about, saying, “Well, everyone at midlife gets arthritis. It’s not such a big deal.”
But the pain kept increasing more and more, and soon started radiating down my legs. So I finally got a referral to an orthopedic physiotherapist. After an MRI, he told me that my arthritis was moderate. That didn’t seem so bad — how serious could “moderate” be? What I didn’t realize was that moderate is only one small rung away from severe.
I kept wondering why I was hurting so much if it was “just” moderate arthritis. I went through treatments of X-ray dye injections to try and get some relief. I started on light painkillers but soon escalated to opioids. The doctors insisted I was “too young” for hip surgery since they have to be replaced every 15 years or so — a fact that I’ve since learned I should have pushed back on — and so they advised me to try to just deal with it as best I could.
Revealing the Full Extent of My Condition
So I put on my best British stiff upper lip, plodding through the pain. But then it just got to be too much. I was having new pains in my lower back. I started to have absences from work. I saw another consultant, and this time they did a full MRI of my spine. It showed bulging discs at all levels, plus degeneration and osteophytes (bone spurs).
It was at that point that they told me my osteoarthritis had spread into my spine. I asked about surgery, but the number of discs that needed treatment meant that surgery might cause more problems than it would fix. But I was able to get in for a left hip replacement soon after. By the time I had the hip surgery, I’d also seen a pain clinic, where I was able to get a steroid injection into my back. It was amazing. It gave me five weeks relief and made me think I might be fixed.
But five weeks’ relief was all I got. I started to get pain in the middle of my back and upper back as well, in my neck. It was also time for my second hip replacement surgery. In addition to that surgery, the pain clinic consultant did ablation therapy on three of the facet joints on the left side of my spine. I pinned a lot of hope on that procedure. I thought it would be the thing that would get me “back to normal.” But it didn’t have any impact. I felt deflated.
Back to the pain clinic I went. At that point my neck was killing me all the time and I was starting to experience numbness in my arms and feet. My feet would feel cold and turn blue. I felt like a real whinger, complaining all the time.
But I was sent to a rheumatologist for yet another MRI and it showed my complaining was not unfounded: There was more degeneration, pinched nerves and bone spurs in my spine, including the thoracic area (which is quite rare). And another diagnosis, to boot: psoriatic arthritis. I’d been using Google for a lot of things but I hadn’t researched that one, even though I had psoriasis. I just hadn’t seen the link.
Learning to Care for Both Body and Mind
Since then I’ve been on heavy duty meds. Physically, I am seeing things worsen. I can see the spiral of lack of activity and muscle wastage. I’ve done physio and exercises, but it hasn’t stopped the wear and tear. I’m at a stage now where I just really physically cannot do anything. One errand out of the house does me in for the day. Yesterday I popped out, went to drop off a car for servicing, popped back and that was it for the day.
I tried to carry on with work, but my boss doesn’t understand disability. I think because this kind of disability is, in most part, an invisible one, people think we should just plow through. I don’t think there’s much public understanding of what it does to the body. I’m looking to see if I’m suitable for what they call here medical or ill health retirement, which means that medically, I can’t work and can draw down elements of my pension to support me earlier.
One of the major impacts that I didn’t foresee was the mental health side of things. You can feel dragged down because you’re constantly in chronic pain. I don’t think I’ve had a day in five years without significant pain.
Mentally, I think I’m coming out of a very low ebb. When it all first started happening and I had to accept and recognize that I was classified as disabled and needed help, I went to a very dark place. I had suicidal thoughts because I felt like a burden on my family. I kept thinking about what it was like for them to see the dad and husband they’ve always known not be able to be that person anymore.
But with counseling and medication for mental health, I’ve been able to shake a lot of that off. And ultimately, the love I have for and from my family has helped take away the thoughts that they would be better off without me.
My Advice for Others Living with Chronic Pain
Be proactive. If you know there’s something wrong, don’t let someone tell you there isn’t. If I had been able to start my psoriasis arthritis medication five years sooner, I may not have lost the function in my joints.
Reach out. You’re not alone. Look for support out there, even if it’s not within your immediate cycle of friends and family, because they’ve got a journey to go on as well. By connecting with other people in a similar boat you can both give and receive support within a community that gets it. (You can follow CreakyJoints on social media — Facebook, Instagram, Twitter, Tik Tok, YouTube — to connect with other patients who are seeking community for living with arthritis and other chronic illness.)
Ask questions. If you feel fobbed off by doctors during your early symptom days, don’t just accept it has to be that way. It’s hard to challenge medical professionals, but actually, they don’t know everything. They have a broad knowledge, but they don’t know the ins and outs, and they don’t know how you feel. You’ve got to measure yourself against your own baseline.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.
