I was recently speaking to a much-respected colleague about an upcoming rheumatology conference, and it got me thinking – if I had a magic wand in this year of Hollywood script events, what would I change in the arthritis realm as it is today? In no particular order, here is my list of 10 things that must change to improve the arthritis world, according to JoelvsArthritis.
1. Arthritis is not inevitable or ‘just old age’
We all know this one. The age-old stereotype and stigma that people with autoimmune disease face throughout their lives with chronic illness. Whether it’s family, friends, work colleagues or strangers, we’ve all seen the surprise on somebody’s face when we’ve told them we have arthritis. The initial shock, the pause – don’t say it, don’t you dare say it – ‘but I thought that’s an old age thing?’.
As somebody who has had arthritis since they were ten years old (diagnosed at 12), it’s an infuriating part of the explanation and rationale we have to give to explain our symptoms, treatments; our pain. Whether that be when starting a new job, joining a club and having to cancel the first time or at the start of new relationships. It’s as awkward as it is frustrating and is the primary reason why I hid my condition for so many years once I left high school.
As I’ve grown older, I’ve seen the value in these conversations, however. It’s an opportunity to educate, raise awareness and change attitudes. As uncomfortable as it is, people like me, with juvenile-onset arthritis and those diagnosed under 40, need to speak up, to change the widely held view that arthritis is inevitable with old age, to illustrate what life with arthritis is like for a young person. The struggle decades before your grandparents get that knee replacement and the impact it has on every aspect of our lives, from careers to opportunities, to starting a family.
‘Education changes perception removes stigma‘. This is a little mantra of mine and what I work towards.
2. Stop attributing everything to my arthritis!
GPs, Consultants, friends – Stop attributing everything to my autoimmune disease! I know my body, if I tell you this is new or different, prove me wrong through science, tests, scans; don’t tell me it’s ‘just the arthritis’.
It has taken me years to get the proper treatment for migraines, nerve pain and other issues because everything is assumed to be because of either my arthritis or side effects of the treatment thereof. It’s one of the most frustrating things of living with an autoimmune condition.
I shouldn’t have to prove to you that something is different. I have lived with arthritis most of my life – if something changes, I’ll be the expert in that.
Doctors, it’s your job to find the cause, not fob me off for another six months until I return to the clinic even more unwell. Friends – politely jog on :). You’re not medically trained, and you will never know my struggle so if I complain of a new health problem; frankly, you don’t have the right to dismiss it as ‘the usual’. I came to you for support, not a diagnosis.
An example of a painfully slow process
I developed psoriasis in my mid-20’s. I had been diagnosed at that point with Juvenile Idiopathic Arthritis (JIA) for 15 years. I had plaque rashes appear, blisters on the soles of my feet and flaking of my fingernails. I raised it with my rheumatology team, but it took over a year for anyone to listen. Eighteen months after reporting this change, I was finally sent to a dermatologist, and I am not even exaggerating when I say I was in the examination room for less than five minutes. He took one look at my rashes and casually said ‘oh, that’s psoriasis. It’s moved on to attacking your skin, here’s an information sheet and a prescription for steroid cream’.
If it takes that long to diagnose psoriatic arthritis, an evident and well-connected cousin of my original diagnosis, then what hope have I got if I get something serious? Imagine if I developed cancer – by the time people stopped blaming my complaints on my chronic illness, I’m sure it would be too late. This has to change.
3. One size does not fit all – don’t tell me what I should be doing
In a world of Instagram, filters and people ‘living their best life’ (or that’s what they show us, at least!), social media has become saturated by health tips, CBD oils, foods that miraculously cure disease or the latest fad diet. If I had a pound for every DM, email or comment that I get each week telling me to speak to a specific Dr or try a new diet to ‘cure my arthritis’, I wouldn’t need a day job to support my writing.
This needs to stop. It’s not only often based upon zero scientific fact or evidence, but it’s profiting from people’s pain, preying on those who are desperate for a way out of the misery. It’s morally wrong and worse still, some of the suggestions I have had are downright dangerous.
When did it become acceptable?
Please, don’t tell me how to look after my disease or body. I wouldn’t tell you how to raise your kids or comment on your Instagram picture that you’d look better in a different dress – so why is it acceptable for you to tell me to live my life differently? Especially when you have none of the essential details required to make such decisions – such as my medication, other conditions, previous damage etc.
Who even are you to be advising this stuff anyway? A sales rep? Certainly not a Doctor. Even if you are a success story of such alternative approaches, what works for you may not work for me. Otherwise, there wouldn’t be around 10m people living with arthritis in the UK alone (Versus Arthritis, 2018).
If I hear one more suggestion of trying yoga, smoking weed or cutting out x, y and z from my diet, I’ll scream. These are the faith healers, copper bracelets and healing crystals from my youth that everyone told my parents to throw at me. Did they have arthritis? No. But it was something they offered because they didn’t know how to empathise and keep their opinions to themselves upon hearing the news.
Back then, there was an innocence, an awkwardness, a feeling of helplessness so these things were suggested. Now, it’s about money and profit and that’s wrong when the target of such things are living in a life of pain.
When my disease and pain was controlled, I was fit, healthy and athletic, sort that out, and I’ll be fine. I didn’t need a fad diet or herbal supplements to play rugby and run half marathons then, and I don’t need it now. My disease means I will be at the bottom of the barrel occasionally when it flares and nothing I consumed or did caused that.
4. It’s not just the patient that arthritis affects
Anyone who has lived with arthritis will know that it gets its claws into every aspect of your life. It affects your family, career, finances, dreams and ultimately your plans and happiness on a day to day basis. Therefore, I added this one in as a reminder for medical professionals that this needs to be factored into the diagnosis, management and long term support of those living with arthritis and other autoimmune diseases.
There needs to be greater support for those around the person living with the disease, how they can help support the individual and discussion around outlook and progression so that the family unit is prepared and educated around potential careers choices.
I was fortunate, my rheumatologist, who I still have today, told my parents when I was 14 to buy me a computer as ‘that was the future’ and look into desk-based careers. Because of that brief conversation, I ended up having a successful career as an IT Manager, but at the time, I wanted to be a gardener or jockey. The state I sit here in today, writing this at 36 years of age, I wouldn’t be in employment now if my parents and I weren’t given that nudge in the right direction.
I was lucky, but I’ve heard from hundreds of people who didn’t get that advice or had such candid conversations with their doctors about the bigger picture and prognosis.
5. Celebrate success – it’s not a competition for who’s the sickest or has the longest list of ailments
Of everything on this list, this is the most controversial one, even more so than the comments I’m likely to get from the yoga-preach community, but it’s something that should be acknowledged and discussed. So stick with me.
A window into my future
For context, my opinion formed on this one years ago, when I was often the youngest person in the rheumatology waiting room by at least 30 years. I would sit there in my wheelchair or on sticks with my dad, starting at the floor as I couldn’t deal with all the sympathetic ‘aww bless’ looks and comments. Or watch as couples whispered away as to why there was this 12-15 year old sitting amongst all the older people. Somebody even went as far to ask me if I was in the right place. Thanks.
It was awkward and uncomfortable and what made it worse is that it was like a window into my future. The swollen knees, twisted fingers, mobility scooters. I hated it and still to this day, its something that I use as fuel – to try and tell myself that I won’t end up like that; but we all know that’s wishful thinking.
What I was less fond of were the ones that were the polar opposite of me—the ones who wanted the attention of the entire room. They moaned the loudest, complained about the wait the most, wore every support aid under the sun, complete with the ‘pain warrior’ t-shirt. They listed their ailments like a roll call of honour. They indeed weren’t the silent shufflers I often worry about.
But apart from aggravating 90% of the room – those in the same position as them, dealing with the same problems – what did it achieve? They were preaching to the choir.
Join our amazing Facebook community
An amazing community
Today, this is played out on a much larger scale on social media. The community that has grown around those with autoimmune disease online is amazing. I’ve never encountered such a supportive group of people. Some, although we have never physically met, I consider as genuine friends.
I try to post my life with arthritis on social media as it is, the good days and the bad days. I think it’s important for people to see the full picture, no filters, warts and all. Yet, without fail, every time I post something positive, whether that be a new personal-best walking distance, having a pain-free day or that something worked in the treatment of my condition, I am flooded with comments such as:
‘Lucky you, I can’t do that‘ or ‘Don’t rub it in‘.
This not only fills me with rage (it’s not a competition) but the people who are sending those messages are entirely missing the point of my work. Yes, the majority of my followers on social media are people living with arthritis because they support, share and promote the work I do (massive thank you, by the way, my work wouldn’t reach anyone with you), but my writing, advocacy and awareness regarding living with arthritis isn’t necessarily for you in terms of the ultimate goal. It’s to change the attitudes of those who don’t have the disease, to remove the stigma, to campaign for more significant research, funding and support for those in my position.
Yes, I show the ugly side; the rashes, swollen joints, pain, days stuck in bed, and that’s important, but successes should be embraced and celebrated too, not frowned upon or lambasted.
Triumph over adversity
A ‘poor me’ approach won’t change attitudes of those not experiencing the harsh reality of living with chronic illness; inspiring and rising above is what will cut through the noise.
Take an amputee, for example. 99% of amputees are not in the media, getting people talking and that’s completely fine, but it’s that 1% that try and do something incredible – whether that’s as straightforward as raising a family, being an incredible parent and telling the world about the realities of that or the Paralympian that against all the odds overcome to achieve greatness.
People must see and, in turn, be forced to have conversations about the ugly side of arthritis. Still, I genuinely believe that it’s through achievement and demonstrating what I overcome to triumph that will truly bring arthritis onto the lips and in the minds of the masses.
6. There’s a lifetime of support needed between Juvenile-onset arthritis and old age
This one is personal to me. I have had Juvenile Arthritis since I was a kid and one thing I have learned is that there’s a whole lifetime of support required between juvenile arthritis onset and what the general population consider as living with arthritis in older age.
From first class to economy
As a child, my experience of care from my medical team was incredible. My rare case was of particular interest to the doctors, and they threw the kitchen sink at me, from intense daily hydrotherapy to joint injections and physio. I would be admitted for a few weeks at a time to save my parents the travel but also to be trialled on every treatment and therapy going. Monitored closely for any positive or negative result – and from some of the drugs I was trialled on, there was a lot of adverse effects!
I felt a priority as ‘that kid with arthritis’. However, after several years of remission between the ages of 18-24, I had a different experience when arthritis returned with interest. It took months to get back in with my rheumatologist after check-ups were reduced to yearly when the arthritis was controlled. It took over a year to get hydro and access to basic physio. Access to a specialist physiotherapist took much longer. And I’ve already explained the wait I had to see a dermatologist regarding the new symptoms I had.
It was a horrible and frustrating experience in which during that period, I lost my job, had severe pressures on my financial security and ended up with significant mental health challenges from the stress of it all.
Support for patients with Juvenile-onset arthritis must not end with diagnosis and treatment to the initial remission. The impact to family, career choices, the life of pain and boom and bust lifestyle all need to be considered and supported. Yearly routine check-ups are sufficient until something changes or goes wrong.
There needs to be more done for those with JIA (and other autoimmune diseases) to promptly access support in the initial stages of a flare to minimise physical damage but also disruption to their lifestyle, careers and mental health.
Juvenile Arthritis is a life of riding the swing of a pendulum. From points to where you live a relatively normal, pain-free life to others that are far more disruptive and tortuous than you can imagine. The support needs to be in place to accommodate this swing, regardless of what point you are at in the journey.
7. Mental health issues are as much a symptom of my arthritis as pain and stiffness
This is another area that’s important to me, having seen my mental health fluctuate in line with the state of my disease. Every time I flare, eventually the cracks in my mental health present, sometimes in the form of depression and low mood, anxiety to other times, far far worse.
Yet in all the years I have needed mental health support alongside my flare in the form of CBT, wellbeing counselling, mindfulness and medication not once has there been any link or joined-up approach between my physical and mental health.
A dangerous time
I remember times where I have been in bits in front of my rheumatologist. Explaining how I hadn’t slept for days because of the pain, I was losing my job, I couldn’t cope etc. and all I was offered was a tissue, a six-month check-up and an increase of my anti-inflammatories. Where was the referral or even the suggestion of seeking mental health support services? Thankfully, my GP picked up the signs a few weeks later and referred me to Early Intervention but looking back at the mess I was in at that moment; the result could have been much worse.
When I am in remission, I have never had any mental health problems. I am not mentally ill at those times in isolation; it’s because my physical health is failing. I wish health services would see it in the same way and offer a joined-up approach.
8. Talk about the lifetime of side-effects from treatments to manage arthritis
Anyone living with arthritis knows that sometimes the side-effects are almost as nasty as the disease. Writing this currently three weeks into a sinus infection thanks to immunosuppression from biologics, I often have to remind myself what the alternative is. A life of continually being under the weather is better than being physically disabled or in excruciating pain.
As you would with cancer patients, side effects of treatments, often lifelong, should be discussed at diagnosis. So why isn’t more weight given to this from the start? Yes, you might be told about the impact of going onto Methotrexate or Sulfasalazine for the first time, but I feel that more should be done during delivery of the diagnosis to prepare the patient for this aspect of their future. There’s the disease then there is treating the disease.
I appreciate there are bigger fish to fry when telling someone they have a chronic condition, potentially for life but tying into my earlier point regarding mental health’s close ties to chronic illness. I feel we should be mentally equipping people for this minefield. The treatment changes needed when drugs stop working, unpleasant side-effects etc. essentially, again, I am calling for a joined-up approach here.
9. Telling me to ‘pull myself together’ won’t fix my arthritis
Just because I can’t be or do what you want from me, don’t take your frustration out in the form of telling me to ‘pull myself together‘, to ‘stop faking it‘ or that I need to ‘get on with it’. It’s upsetting, abusive and dehumanising.
Are some of these phrases ringing true for you, my friends?
I’m frustrated too, but I have to live with this and the pain 24/7, a life sentence, so if you’re frustrated because I cancelled plans or couldn’t participate, imagine how I feel about it!?
Support, empathise; don’t insult, dismiss or dilute my challenges because they don’t align with what you want – they don’t align with what I would like to do either.
If words fixed medical problems, then linguists would be in place of doctors, but comments such as these are undoubtedly capable of severe damage.
10. If talking about my arthritis makes you uncomfortable, then the conversation must continue
If anything I write, post or share about my life with arthritis makes you uncomfortable, then I’m sorry, but we must talk about it more. For it’s that discomfort that tells me there is still a stigma to remove, barriers to break down.
As humans, we are programmed to be wary of differences in others and that in which we don’t understand. It’s the same reason why a child may ask ‘what’s wrong with that man, mummy‘, the first time they see a disabled person. It’s not wrong – it’s lack of understanding, education, awareness.
By talking about our experiences with chronic illness, we are giving people a window into our lives. The opportunity to educate them. The opportunity for them to ask questions and more importantly, the chance to empathise.
I don’t share my story for attention, it comes highly unnatural to me, making me uncomfortable, but I do it to try and enact change. I do it for others who are where I was a year or so ago; too broken and beaten down from their struggles with chronic illness to have the energy to speak up, let alone the confidence.
I speak up for those with arthritis to try and improve the quality of their lives by raising awareness with those who thankfully will never have to experience the suffering.
Versus Arthritis. (2018). Arthritis. [online] Available at: https://www.versusarthritis.org/about-arthritis/conditions/arthritis/ [Accessed 10 Sep. 2020].