Rheumatoid arthritis: would my life be different if I had been diagnosed sooner?

Summary

In this anonymous blog, a patient explains how her experiences of pain were dismissed after the birth of her first baby. Although her own research indicated she had rheumatoid arthritis, she had to battle misinformed and unhelpful doctors to get a referral to a specialist. This led to delays in her diagnosis, leaving her questioning whether life would be different had she been listened to sooner.

This blog has been published as part of a series for World Patient Safety Day 2024 and the theme of Improving diagnosis for patient safety. #WPSD24, World Patient Safety Day 2024, WPSD 2024.

Content

Debilitating pain dismissed

Just over ten years ago I had my first baby. The first few weeks were the usual blur of excitement, recovery, getting to grips with feeding and endless night time nappy changes. In the middle of all of the upheaval, it was easy to miss the early twinges. But as the days went on I began to notice a sharp pain that radiated from my shoulder every time I picked up my baby. I just needed to learn to hold him better, I was told. But no number of cushions wedged under my elbow was helping.

By the time my six-week check came along, I couldn’t manage the ten minute walk to our GP surgery.

The joints in my hands and feet felt like they were full of glass and I knew something was seriously wrong. A friend took me and my son to my appointment in their car and I was hopeful that the GP could give me some answers. “Oh, everyone has pains after having a baby, it’s just that your joints are more floppy.” I was told to take ibuprofen—they were sure I’d feel better if I tried to keep active and build my muscle strength. I took on what the GP said, and left wondering if I was just making a fuss. But it turns out I wasn’t.

The growing impact on life

Every joint in my body was painful, all day, every day. I couldn’t sleep, couldn’t get myself out of bed and sometimes couldn’t drive because I couldn’t trust my wrists to change gears. I went back to the GP three more times in those months, to be told each time that my blood tests looked normal and it was just my joints sorting themselves out after pregnancy. I protested that surely it couldn’t be this painful, and be everywhere if that were the case, but was told to just keep an eye and come back if it didn’t go away.

By June, I was desperate for some relief. The pain was horrible, but the thing that distressed me most was the impact it had on how I was able to look after my son. I developed special ways of lifting him, but couldn’t hold him for long periods of time. When he wasn’t at work, my partner did almost everything to care for our son and keep the house running.

Fighting for a referral

I had looked up rheumatoid arthritis (RA) in the past, as I had had some symptoms a few years earlier when I was at university in another city. At that time, I had been told by a GP that it couldn’t be RA as it was on both sides—I now know that to be completely false, as RA usually presents in the same joint on both sides of the body. As a student, I was told I had weak shoulders and was referred for physio. The pain had eventually passed on its own.

I decided to look up my symptoms, which were now much worse, on the NHS website—they were absolutely classic signs of RA. I was alarmed to read that early diagnosis and treatment are vital to achieving remission. That certainly hadn’t happened for me! Armed with my new knowledge, I booked another GP appointment. This time I saw a different GP. After explaining my concerns and symptoms, I asked her to refer me to rheumatology for further tests. She barely looked at me. “I can refer you if you insist, but it won’t make any difference. You don’t have RA.” I was so shocked by her response that I didn’t say anything. I just took the referral letter, relieved to have what I needed.

9 months later: investigations finally began

It took another three months to see a specialist—when I had my first consultant appointment I had been living with symptoms for nine months. The rheumatology consultant took one look at my hands and said, “Yes, that looks like RA.” But the rest of the conversation was confusing. He said he could see evidence of erosion on an x-ray, but that it may not be RA after all—he would need to run more tests. They took some more blood samples and I left with the impression that it could go either way.

After a further three months, I had a follow up appointment, this time in a different hospital with a different doctor. She was very kind and made me feel at ease. But I was confused when she asked me, “So, are you ready to start on methotrexate?” I asked whether this meant I did have RA. “Oh, yes, of course. Didn’t anyone tell you?”

The devastation and relief

I remember feeling completely overwhelmed by finally having a diagnosis. It was both a relief, and devastating at the same time. I didn’t feel ready to make a decision about going on medication as it had implications for future pregnancies and carried other risks. Thankfully, the doctor gave me some information to read and a number to call if I decided I wanted to go for it—she would send a prescription to the hospital pharmacy for me to collect the next day. I was grateful to be given time and space to make the decision. However, I sensed her keenness that I get on methotrexate quickly, so after a week, I called and started treatment.

The impact of diagnostic delay cannot be underestimated

My symptoms and interactions with healthcare over that year had a deep impact on me. It affected my physical health in obvious ways, but it also had a negative impact on my mental health. The stress of knowing something is very wrong but feeling like no one who can help believes you is enormous. I felt like I’d missed out on precious experiences with my son. The decision over returning to work after maternity leave was taken out of my hands—there was no way I could have worked with the symptoms I was experiencing.

What happened to me isn't unusual. Sadly the threads of my story have been experienced by so many people—having serious symptoms dismissed, not being told the results of tests and rudeness from healthcare professionals. I complained to the practice about the GP who had reluctantly referred me, outlining my concerns about how she had spoken to me, as well as the fact that her diagnosis had been wrong. What I received was a denial that she had used those words and an “I’m sorry you feel that way” apology. Sadly, it left me unconvinced that she would make any changes to her practice to stop the same thing happening to other patients.

It took many years to find the right medication, but my RA is now under control. It does still affect many aspects of life, but I am able to work, look after my children and do things I never thought I’d do again, like camping and hiking! I also have a positive relationship with my current consultant and support is there if I need it.

But I do sometimes wonder how different things might have been if my GP had investigated my symptoms during that six week check. Would I have been diagnosed sooner? Would the RA have progressed as far as it has? Would I have the complications I have today? Would I have ended up on such strong medication, probably for the rest of my life? I’ll never know the answer to these questions, but they have made me realise how important it is to push through when healthcare professionals dismiss your symptoms. Your intuition—and even your knowledge—might be correct.

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