Two university students talk about the struggles of living with an invisible illness – axial spondyloarthritis and inflammatory bowel disease – sharing their personal experience and advice.
Bethany D has suffered with chronic pain since the age of 13 (2012). She was diagnosed in 2017 with a non-radiographic axial spondyloarthritis (axial SpA), a condition within the same family as ankylosing spondylitis.
My journey into diagnosis was rather unforgiving. Not only is my condition non-radiographic, meaning it does not show up on X-rays, but I am also HLA-B27 negative, and that made the diagnosis more difficult. I spent a few years seeing different specialists before they could explain why I had this sudden, severe, pain in my lower back and legs. I saw some incredible doctors who made the process feel a little easier, and I had some appointments that were of a more challenging nature.
The onset of my chronic pain was sudden, contrasting to the previous 13 years of my life, in which the extent of poor health was a winter cold. I was hoping I could have an x-ray (or some other simple examination) which would show a perfectly curable condition. But alas, that did not happen. When the investigation process began, x-rays, MRI scans, DEXA scans and blood tests showed nothing. The words “non-radiographic axial spondyloarthritis” were spoken by my specialist rheumatologist in 2017, and it was at that point the previous 5 years of chronic pain made sense. I am now under an incredible team who are helping me manage my condition.
It might be that some of your friends or family have never experienced illness, and that might impact their understanding of what you’re going through. This is where the cliché “patience is a virtue” comes in handy.
You might have to have difficult conversations with your loved ones to help them understand what you’re experiencing and how they can best support you. If at first these conversations don’t feel effective, take a deep breath, get some head space, and try again.
AS is complicated (I still get surprises every now and then!), as are all invisible illnesses. It’s important to know that the task of teaching your loved ones about your condition might not be easy, but it’s definitely possible. In fact, once done, it can make your life a lot easier as it is likely to strengthen your network of support.
Doctors are another group of people whom you might have to have difficult conversations with. As mentioned previously, sometimes hospital/GP appointments can be challenging. The many appointments that I’ve experienced have taught me several important lessons.Firstly, be assertive. This might seem nerve wracking at first, but if you do face a hurdle and you need to push a little bit to make sure that the doctor fully understands you and your condition, it’s vital that you do this. I would suggest having a notes page with you, so that you can be sure you don’t forget to tell the doctor anything – and can keep track of what questions you need answering.
But the most vital part of your appointment is to have a positive attitude. If you go into the appointment with your best intentions, trying to get the most out of your time there, you will be far more productive than if you went in expecting the worst. Also, always try and find something nice about going in for your appointment, it will make the whole experience much happier (for example, there is a great bakery across the road from my hospital, and I always make a beeline for it when I’m done seeing my team. A good pastry is always uplifting!). The best way to achieve this positive attitude is to remember that this team of doctors are there to help you, and your positivity is going to really help them too.
Life with an invisible illness can be tough, and there will be challenges you’ll have to navigate. In terms of friends, family, and doctors, the most important thing to remember is that they are there to support you – and going into conversations and appointments with an optimistic smile will make even the trickier times that much easier.
The nature of having a non-radiographic axial SpA meant I had to fight my corner a little harder than normal. I did not have radiographic evidence to support my pain, and at points I felt as though I had to fight to ensure people, including doctors, friends, and family, understood the extent of my condition.
Now, however, with the help of my fantastic rheumatology team and a great support network, I am in much more positive position where I can learn from my experiences and help others do the same.
Bethany B was born with a rare and complex endocrine condition, and throughout her life – due to long term steroid treatment, amongst other things – has added various orthopaedic conditions to her ongoing list of illnesses. However, in 2014 (aged 15), she was diagnosed with inflammatory bowel disease (IBD) – an illness which affects around 7% of people with AS.
Unlike Bethany Dawson, I had never experienced life without a chronic illness – so I’ve never had, or at least couldn’t remember, experiences where I had struggled to be taken seriously due to my illness being invisible. This was partly because, until a few years ago, these battles were always held by my parents; I had relied on them for many years to fight my corner when needed. But it wasn’t until my IBD diagnosis that I truly first experienced the prejudice that exists towards invisible illnesses. Whether prejudice is the correct term to use – as I don’t believe that health professionals go into their field for any reason other than to help people – or whether ignorance is more fitting. I guess a case could be made that you can’t have one without the other.
Not only have my experiences highlighted the importance of education regarding invisible illness, but specifically the battles that young people face with an invisible illness.
Even though I had years of in-depth medical history, when I went to my GP complaining of IBD related symptoms, it was first suggested that I be referred to a psychologist rather than a gastroenterologist. Many of the issues I faced and the delay to diagnosis were due to the people that did not believe I was ill. I don’t write this to scare you or put you off from hospitals (because it’s incredibly important that you see trained health professionals), but to explain why we’re working to eliminate the assumption that young people ‘can’t be sick’.
Often, with a chronic illness, you don’t appear as ‘typically sick’ because you live with your symptoms every day. So, when this occurs in a young and healthy-looking person, it does become more difficult for people to empathise with your symptoms.
That’s why it’s important for you to have the confidence to fight your corner when you need to. However – it’s also important to go into all of these things with a positive attitude, because they won’t always be bad experiences. For example, I moved to University last year, a level of independent living that nobody ever predicted would happen, and within the first few weeks I was unwell and had to be taken into hospital. I was met with amazing care from incredibly understanding doctors.
However, I’d say that my main advice is to never let your health get in the way of your determination. Plans might change, you might end up somewhere else (or end up arriving there a few years later) but never let it stop you being determined to achieve what you want.
I know that’s easier said than done, but there comes a point where you can either decide to stay down or pick yourself up. I’d suggest the latter (after an appropriate amount of time feeling sorry for yourself with some Netflix and Chocolate – because it’s important you let yourself feel sad sometimes). You know that, through no fault of your own, achieving your goals – whether that be certain exam results, getting into uni, getting a job, going to work every day – it’ll be 10 times harder with an invisible illness.
It’ll be harder because your living with painful symptoms, and because of the misconceptions the world will have of you. That’s why you’ve got to make sure you keep your motivation and positivity.
Stephen Hawking said that ‘disability need not be an obstacle to success’, one of the core beliefs of BVisible, and he was exactly right.
The world deserves to hear your voice and be impacted by whatever you end up doing in the future – so don’t let your health keep you down. Because it will get better, and – even though there might be no cure – your tolerance will improve every day. Outside of making sure your condition is stable and not causing any additional issues – finding your individual coping mechanisms will make life easier too. You’ve got this! We promise.
As much as a chronic illness is not necessarily the hand you would have chosen in life, you can’t ignore how it will shape you as a person, the lessons you will learn from it and the stamina it will build for you.
Having an invisible illness is arguably one of the most character-building things that can happen to a person. You may not have asked for it, but if you learn to accept the condition within which you live you can go forth and achieve great things.
Bethany Dawson and Bethany Bale are two university students who have come together to bring illnesses that are out of sight, into mind. BVisible is a nonprofit organisation founded by the Bethany’s that aims to challenge – and ultimately eliminate – the misconceptions often welded to disability, especially disabilities where symptoms aren’t visible.