I’m not one to mope or to seek any special sympathy but this month marks an ambivalent anniversary for me and I promised myself I’d write publicly about it. I want to do so because I know other people who have had a similar experience and someone else might find this blog and find it of interest.
Ten years ago I was a very strong and fit young man, whose primary life-interest, to be blunt, was competition bouldering; a form of rock climbing at low heights that focuses on strength and technique. One can spend months on a bouldering problem just trying to do the next move in a sequence of five moves total, for example, building up the necessary strength to pull it off. In January 2006 I had just got to the stage where I could do multiple one-arm chin ups and was on a regime of 600 sit-ups per day.
One day when I was climbing I suddenly got a sharp pain in my knee. I ignored this; it was usual to get pain and I had a bit of a macho thing going on that “pain was good” or something. After about 20 minutes it hadn’t gone away and I looked down and saw that the knee was very very swollen. I thought it must be bruised and that I’d bashed it during some dynamic move. The next day I woke up and also found that I had severely limited shoulder movement and an intense pain when I attempted to lift my arms above my head. Oh dear, I thought. I went to the doctor who sent me to a physiotherapist about the shoulder and attributed the knee swelling – still there – to a bruise.
Over the next fortnight things got much much worse. The knee continued to swell and my shoulders were still agony but I also started getting a fever and a pain in my ankles and hands. I certainly couldn’t climb and I could see that all was not well. I went back to the doctor a fortnight later and I think, if I remember rightly, I was prescribed a course of antibiotics and told to take it easy. I remember it being quite patronising. But things weren’t easy. Another week passed and things got worse. I went back to the GP and saw a different doctor who actually hauled the original doctor into her room and asked what he was thinking and why he hadn’t sent me to accident and emergency (the “ER room”) a week earlier. They packed me off there and then for a set of extensive blood tests and other more invasive investigations, with a rheumatology clinic booked for me the next week.
In the meantime, the pain intensified almost everywhere. I couldn’t hold a towel to dry myself because my hands hurt so much. I couldn’t lift a cup of tea to drink it with one hand without it being agony. I had gone from being able to lift my entire body weight on a couple of fingers to not being able to care for myself, in about 8 weeks. I’d also lost so much weight. I’m six foot two (1.88m) and my weight was down to 8 stone 7 lb (54kg). I didn’t look at my best.
After a few visits to the rheumatologist, they told me that they suspected that I had an autoimmune condition called rheumatoid arthritis. I knew nothing about this. Why would I? Arthritis, as far as I was concerned, was something that old people get and it’s, you know, just a bit of hip pain. I think I thought of it as some kind of revenge of life upon the elderly, something we’d all have to contend with in time, but just an inevitable toll. I never thought that it would change my life before I was twenty.
But it did. Also, it turns out that the pain is much much worse than you imagine. It’s impossible to remember pain or to truly imagine the pain of others, but it is not just a bit of hip pain. It’s as though someone has inserted sharp lumps of rock inside your joints and every time you put weight on them or move them these mini-knifes are cutting your muscles, tendons, and bones. The condition also brings with it immense fatigue. There are two reasons for this: 1. being in pain is tiring; but 2. because rheumatoid arthritis is caused by the immune system mistakenly attacking the joints, you get the same kind of tiredness/exhaustion as when you’re fighting flu – the kind of exhaustion that defies belief where you can’t really understand how normal tasks can be so tiring.
The way that they treat rheumatoid arthritis is to blast your immune system with drugs that suppress it. There is no cure (at least, not yet); you just have to take drugs for the rest of your life. All we can do is to stop the mechanism. This is because rheumatoid arthritis is very distinct from osteoarthritis. It’s completely different – as I said, a condition where the immune system attacks the joints and internal organs – and anyone can get RA at any point in their life. That said, it’s more common in women over 40 and smoking/red meat consumption massively elevate your risk factors. I’m not a woman (over or under 40) and I’ve never smoked. A bit guilty on the red-meat front, but I was outside the usual demographic that they would expect.
So, they whacked me on some mega doses of corticosteroids and some mild disease modifying anti-rheumatic drugs. These helped quite a lot at first! I felt better than I had in months. Maybe, I thought, this whole thing is just a brief illness that will go away. So I tried to climb again. I went straight back to the hard climbing training rooms that I’d been working with before and launched into my old routine. I immediately ruptured my bicep and the muscle curled into a small ball on my shoulder, which actually hurt a lot less than one might think. But it’s never really gone back to full power since then.
After a couple more months or so, however, the pain started getting worse again and I had to try some different drugs. But nothing seemed to be working. I reacted badly to methotrexate, the front-line drug of choice, so they tried other things. Every cycle of “trying a drug” takes ages though in RA. Most take about 3 months to work and, if they aren’t working, you have to clear them out of your system for a further month, then start the next drug, then wait three months.
It gets even better, though. It turns out that rheumatoid arthritis is a bit of a misnomer. It’s more like a form of lupus that just so happens to primarily manifest in the joints. Meanwhile, though, mine had begun to spread to the blood vessels; vasculitis. This, in turn, cut off the blood supply to the motor and sensory nerves in my foot, causing some permanent damage there. Brilliant. It was also the most painful experience of my life while those nerves were dying; it was like an electric shock was being run through my leg constantly. I didn’t sleep for three days at one point and had to go to hospital as an emergency again then. The chemo-class drugs I was on at this time were also making me very very sick (as in actually being sick and feeling nauseous) for about 36 hours per week. I’d do the drugs at weekends so that I wouldn’t lose time working on my Ph.D., but this didn’t make for relaxing downtime. At that point, I started to need to walk with a stick.
When this vasculitis kicked in, though, they suddenly escalated my treatment to a class of drugs called biological therapies. These are the latest and greatest in treatments for autoimmune conditions. And they have saved my life. I’ve been on a couple in my time now and they have reversed my disease progression to the extent where I perform a high-functioning academic role and most people would never know I have anything wrong with me. I get a lot more low-level viral and bacterial infections because my immune system is compromised (I have a bug as I write this) and I go into hospital twice a month for tests and/or immunotherapy on a drip. I can’t go running because I have broken my foot three times doing that because my bones have been softened by steroids. But I do exercise frequently and I think I do pretty well considering.
So, why write this post? Well, it’s personally cathartic in some senses (perhaps I’m just over-sharing, who knows?), but there are also broader points that can be drawn from this:
It’s weird and difficult as a young man in a culture of masculinity to suddenly feel as though things that were once part of your identity are gone. I still miss the motion of climbing and I still find my physicality occasionally frustrating. When I was first unwell, I went through an intense period of grieving for what I felt I’d lost. The positive narrative is that I threw myself into academic work in a way that I would not have had I continued to climb. As a result, I’ve just been made a full professor. But there wasn’t any support for this psychological difficulty. Nobody in a hospital ever once asked me whether I was OK dealing with my completely transformed life. There is, of course, a different gendered experience for women in such cases, which in many instances revolves around being disbelieved or ignored. But there are gendered elements here for everyone.
People say things that are very hurtful even when they mean well. I’ve had countless people ask me if I’ve “tried X remedy that worked anecdotally for Y relative who also had Z” where “Z” is some really awful reductive version of the hell that you are going through and X is some untested thing. And it’s very hard to say: no, I’m basically on chemotherapy drugs to try to get this condition under control, a few omega oils are really not going to do it. It’s also difficult because when you give this response back, the usual defensive mode that people go into is: oh, well if you’re not really willing to try everything, then you can’t be that unwell. This is so frustrating. Friends, also, sometimes don’t quite understand or just feel powerless/don’t know what to say. I could never read this as whether they didn’t get it, didn’t believe me, or just didn’t know how to react.
Invisible conditions are not great. I mean, there are plenty of visible disabilities that are not great, either, but I had some days where I could barely stand (before the hospital gave me the stick) and the only way that I could get into university was by using the Underground and buses. But nobody would offer me a seat because they couldn’t see I was unwell. I was too proud and nervous to ever ask and so I’d sometimes turn up at my undergraduate seminars exhausted and pretty unwell. Even when I did have the stick – which served as a visibility prop – I felt so dreadful when people would offer me their seats. It was surely an internalisation of that masculinity that I mentioned above, of course, that made me feel like this. But it didn’t change how I felt. I also worry, now, that presenting visible conditions in public might expose me to hate crime. There is a ridiculous rise in this against disabled people in the UK and it is sickening.
It puts a lot of strain on the people around you. I had a partner (now my wife) who helped me through this. But she suffered too. The medical system isn’t great at considering how inter-personal relationships are affected by this.
Knowing as much as you can about a condition is important, although it’s also terrifying. I joined the Arthritis Research UK funding panel – USER – for stakeholder members and for many years sat on a panel assessing grants against the charity’s remit. It was fantastic to see the range of new work in progress and also to see how a process could work that involved lay assessors. Although, to be honest, this prompted me to do a lot of medical/scientific self-education so that I could read this proposals and understand them. All royalties on my academic books go to Arthritis Research UK.
As an appendix, I’d just like to say the following (although I am not a medical doctor and this should not replace proper medical advice, it is just based on my experience):
If you have symptoms of swelling in joints coupled with a fever go to a doctor ASAP and try to get to a rheumatologist. Don’t ignore it too long. GPs/family doctors are rubbish at spotting RA as well, so you should be insistent and try not to let them fob you off.
If a rheumatologist suspects RA, they should be prescribing you medicines sooner rather than later. The sooner it is treated, the better (you’ll avoid permanent joint erosion), and current best practice is to move to methotrexate ASAP. In severe cases, biological therapies (anti-TNF, anti-IL6, or B-Cell therapy) should be started once a diagnosis is confirmed.
A diagnosis can take a long time since there is no single blood test to confirm RA. If someone tells you there is, they are wrong. Even the so-called “rheumatoid factor” can be present in people without RA and those with RA may not have it. Diagnosis is achieved by a combination of blood tests and in-person clinical expert assessment. It is also possible to have “seronegative RA” in which blood results are not abnormal but clinical signs of a polyarthritis are present.
Rheumatologists are overworked since a relatively large patient body develop arthritic conditions. So you may not get much time in a clinic with them and you should come prepared. Make notes of your daily symptoms – including a 1-10 pain score – and take them with you to clinic. Get a friend or relative to come too. Try and get a roadmap for treatment. If things are too hard in your life with your condition, say so. I was awful at not really saying how ill I felt (a combination of British and male). At one clinic, a very nice registrar asked me how I was getting on and I said “OK!” She said: “don’t be ridiculous, you can barely walk”. Don’t doubt yourself, either. If you are in pain and suffering – even if a doctor doesn’t take this seriously (and, sadly, some don’t – and patients blame themselves) – that matters. Insist on help.
Most people now get good treatment for RA. Biological therapies are a modern miracle. But it will take a while. Hold on in there. It’s a tough period physically and emotionally. It’s scary, especially to read up on side effects and potential disease progression. But it’s better to know.
And so that’s my ten-year experience. It’s now something that profoundly defines me but that not many people really know about. I don’t go around shouting about it but I don’t hide it either. It’s a condition that could be much worse but, of course, could be much better. In academia – and other very competitive fields – it’s not usually the done thing to talk about one’s health in case it compromises your chances on the “job market”. Well, I can’t fix that situation for labour and I can’t promise that panels won’t be prejudiced (I guarantee that no panel I sit on will be, but who knows what happens in this ultra-competitive environment). But I hope that writing about this is something that is interesting and/or a glimmer of hope for others who might be in such a position.