Bridge over the River by Liz Morgan

An excerpt of Liz's story was featured in our Spring 2017 magazine. Read her full story here.

It probably wouldn’t surprise you to know, but getting rheumatoid arthritis was not on my bucket list. Technically, neither was getting diagnosed with rheumatoid arthritis.  But without a diagnosis, you can’t get treatment.  So, for the sake of completeness and anonymity, I will say that I am currently being treated at a central London teaching hospital. I have a male consultant, who has also completed a PhD and published several research articles.

I don’t remember what outcome I expected from my first consultation. I think I was expecting an expert in his field to confirm that the pains in my wrists were just as a result of too much typing at work. It was right that I’d been referred to see him, as he had the level of expertise needed to rule out anything sinister, and he’d happily discharge me back to the care of somebody more appropriate. One reassured patient; box ticked. Funny how life doesn’t quite go to plan.

The disease first manifested itself with weakness in my hands and pains in my fingers, especially the middle finger of my right hand. I would wake up with one or more of my fingers curled up and had varying degrees of pain in straightening them up again. Even now, I’m cautious about curling up certain fingers for fear of not being able to uncurl them again. Appropriately enough, a straight and extended middle finger is a pretty good summary of how I feel about arthritis! 

In my mid-20’s, I was diagnosed with Menier’s Disease, after a 2-year period of dizzy spells, which has left me with reduced hearing in my left ear. There is something that feels very ‘individual’ about being deaf and arthritic in my mid-30’s. Sure, by the time my peers are in their 70’s and 80’s they too will probably be deaf and/or arthritic. By the time my peers are getting used to nodding along, not quite being able to hear what’s going on, or not quite having the grip to open jars, I’ll be an old hand at all of it, having got in there 30 years earlier. For once in my life, I can be a trend setter! 

When I tried to explain this to my consultant, I only got as far as saying that I didn’t expect to be deaf and arthritic by the age of 35. To which he looked at me with apparent incredulity and said “you’re not arthritic”. It did seem somewhat churlish to ask why I was in an appointment with a consultant rheumatologist, if I wasn’t arthritic. I assume he based this comment on my most recent disease activity score. But as far I was, and am, concerned, I had the diagnosis of arthritis and had been experiencing pain and stiffness. Therefore, in lay person’s terms I was arthritic. His response stung me. Not because I claim to be an outstanding wit, more that I felt my consultant did not understand self-deprecating humour as a coping mechanism. Maybe by clinical definitions, I wasn’t arthritic, but if trying to make a joke about it helped me come to terms with something I found rather overwhelming and scary, is there any harm in that?

At one of my first appointments, I was given an ultrasound of both wrists, and was told that I was lucky to have this as a means of diagnosis, as it wasn’t something commonly used. To me, it just seemed like boys with toys. How grateful must my consultant be, that my diagnosis gave him an excuse to play with a shiny expensive echo scanner? If this seems like an unkind response, it isn’t meant to be. But so soon after being given what is a life altering diagnosis, the word ‘lucky’ wasn’t really what I wanted to hear.

As the song title goes: “The Drugs Don’t Work” – so 6 months after my diagnosis

I was put on methotrexate. If you mention methotrexate, anyone who’s heard of it will usually tell you that it’s a nasty drug. They may even know somebody who’s not been able to tolerate it, because it’s a nasty drug. Nobody outside the consulting room told me that taking methotrexate would remind me what it was like to no longer be in pain. Why would they?  It is, after all, a nasty drug. Instead I was told, very clearly, very pointedly and repeatedly that I must not get pregnant and needed to make sure that I was using reliable contraception. Having been married 8 years at that point, if I didn’t know where babies came from and how to stop them, then there’s probably little hope for me. I fully accept that a clinician’s role is to make sure that the patient is fully aware of the risks before being prescribed a drug, but I found this an excruciatingly uncomfortable conversation to be having with a man I’d only met once before. The last time I had such an assertive conversation about long term contraception was with my now husband, and he at least waited until the third date.

It doesn’t surprise me that there’s a strong link between arthritis and depression.  I found arthritis to be a very lonely place. Whilst there are a lot of shared experiences I have with my girlfriends, arthritis isn’t one of them. Then there’s the routine of being ill – blood tests (necessary, but invasive), eye tests, GP appointments, hospital appointments, trips to the pharmacy to collect drugs, remembering to actually take the drugs, back to the hospital. For the most part, I can block out the fact I have arthritis and pretend that everything’s normal, but the routine of illness always reminds me that’s not the case. This is why I am never at my happiest when visiting the hospital, as not only does it remind me that I’m ill, I’m reminded of the first diagnosis and the feelings that engendered in me.

I remember one particular consultation – during a stressful period of my Masters, around the time I raised the complaint about my GP surgery. He commented that I seemed very low, which, to be fair, I was. I just didn’t see benefit in going into meltdown during the appointment. I saved that for 10 minutes later in the ladies’ loos. More importantly, after previously being told that I’m not arthritic, I didn’t really feel encouraged to open up and share my thoughts. 

I am aware that a diagnosis can only be made on what the patient presents. Please understand that we patients can be scared or confused or just plain shy and may well not give you all the information you need. I admit that this is something I am not good at. For me, open questions such as how are you, or how is life, won’t provoke a helpful response.  Had my consultant not simply commented that I seemed low, but had in fact asked the direct questions – ‘are you feeling low or anxious’, ‘is there anything on your mind particularly’ or ‘are you feeling especially tearful or finding it difficult to cope’, the consultation may have had a very different outcome.

I don’t feel angry that I got rheumatoid arthritis. Shit happens, and it happens to everybody. I do feel angry that my hospital appointments to date haven’t given an appropriate space to express what it means to me to have arthritis. Time for clinical appointments is limited, and rheumatologists are not trained counsellors.  For me, the diagnosis was a form of grief, but a kind of grief which doesn’t follow a linear process. As it were, I have emotional flare ups, as well as physical.  I don’t always know how or where the best place to consolidate that is. 

For me, the bottom line is that I am never not going to have arthritis. I may achieve this mythical ‘burning out’ that one Specialist Rheumatology Nurse mentioned, but the worry of a flare-up or other complications will always be there. A diagnosis of arthritis not only indicates a change in you, the individual, but also changes the way you relate to the world around you.