Growing up with Juvenile Rheumatoid Arthritis
It’s not something I talk about much. Some people know, some people don’t. Some people know out of necessity like family members and employers, some people know because they’ve been there from the beginning, such as friends who knew me before the diagnosis. Most people in my life now don’t know. Well, until now. Now that I’m flaring again after two years of remission. I feel this need to write about it.
It hasn’t always been easy navigating life with a chronic illness. I’m not writing for sympathy but simply to give a narrative to my story. I hope that openly talking about Rheumatoid Arthritis will increase awareness, sensitivity and understanding of it, whilst laying the foundations for newly diagnosed young people who are lost and need a voice for their feelings. And hopefully, I can provide inspiration and guidance.
So let’s start from the beginning.
A diagnosis plays confusing games on the brain. It feels like a life sentence yet it also brings relief because you know what it is and it’s real. And then… it seems like too much to consider all at once.
Questions arise such as, will I get better? How will my life change? What are the side effects of this medication? How long will I have to take it for? Will it even make a difference?
Now bare in mind I’m writing this after 12 years of living with JRA. I was diagnosed when I was 10 years old, and Juvenile RA is a slightly different and some would say, more aggressive form of RA. Although I remember the early days and diagnosis as vividly as ever, my thoughts weren’t as formulated or mature then; simply, I was scared and confused.
Having a chronic, invisible disease comes with many daily struggles. The disease throws itself a party in your body in the form of joint stiffness and pain, muscle fatigue, brain fog and weakness. Then the struggles of dealing with these symptoms have a tidal effect. You experience sleepless nights, depression and anxiety; this is something I struggled with a lot at university, surprisingly, at a time when my disease was most under control. I think this was because I was on my own for the first time and terrified that any day I could wake up immobile. I put a lot of pressure on my then long-distance boyfriend because I struggled with being on my own. I had to learn a lot from dealing with the effects of my disease and I had to learn to control the way I behaved. Because often, I freaked out and needed a punching bag I guess. Teenage hormones didn’t help. I delved into alcohol, self-harm and other destructive behaviours, not giving my body much respect because I never felt like it deserved it after years of being in pain. Consequently, I learnt a lot about myself and grew from this experience. And through all of this I had a great support system. At uni, my flatmates were always there to pick me up, whether that was literally or metaphorically… and they helped me through a lot.
I remember that study and work pressure, family stress and relationship difficulties equally weighed me down as a teenager. Looking back, I think my first panic attack happened when I was 16. I was arguing with my mum about not wanting to go to my part-time job after recovering from pneumonia and a terrible flare. I wanted to quit because I was scared of the long hours standing. I didn’t really realise I suffered with panic attacks until I was at university, though looking back the signs had been there for a long time. Often, I came out with my ‘nervous rash’ in stressful situations — a red patchy heat rash on my arms, chest and neck — which I’ve actually had for as long as I can remember.
Fatigue is a pest. It’s not just tiredness. It’s physical and mental exhaustion, it’s functioning even though you have been switched on power-reserve mode. I remember falling asleep in lessons all the time at school and sixth form, and my peers didn’t really understand that It was because my body was battling a chronic illness and dealing with my hardcore drug habit.
On top of this, the buffet of medication prescribed comes with a sea of side effects, so when you think you’re getting better, your immune system is actually weakening and putting you at risk of serious infections. Oh and they hurt. Not in an ‘ow that’s a needle going in my skin’ kind of way, but in an ‘ow that medicine is burning my insides’ kind of way. Some make you feel sick, and I developed anticipatory nausea before the injection because my brain knew I would be sick with it. It’s not something you want to do to yourself. So you put it off, and fight with the stroppy teenager in your head that says ‘don’t do it’ with the mature you who knows you need it to fight off the disease.
So you may or may not know that Rheumatoid Arthritis is just one of many Autoimmune diseases. That means it is caused by a fault in the immune system, as it gets confused and attacks my joints and surrounding tissues instead of foreign bodies (like it is supposed to do). This causes irreversible damage to the joints and bones. There is no known cure. Whilst the medication prescribed can put you into months or even years of remission (a disease-free period), you still have an indefinite diagnosis.
Autoimmune diseases often like to have a pair, a dancing partner, to move along your body with. That means it is not uncommon to develop a secondary condition that is associated with autoimmune diseases. For example, I have developed Sjögren’s Syndrome, which is a gland problem, basically the experience of having very dry eyes and mouth 24/7. My optician recommended eye drops and I drink plenty of water, but besides that there is very little I can do about it. I also have Raynaud’s Disease, which affects my blood supply to my fingers and toes, often resulting in very cold extremities that turn white and blue when I’m outside.
As you discover new ways of doing things, you realise how important it is to communicate efficiently and often. Your loved ones are not mind readers, after all, it is predominantly an invisible illness. Even if they can see the swelling in your joints they can’t possibly feel your pain, and it’s not their responsibility to walk on eggshells around you and give you sympathy constantly. Plus, you don’t actually wish for others to really understand or feel your pain because you wouldn’t wish it on anyone. What you really want is their patience and support.
I found when I was at school and uni, my anxiety was fuelled by the fear of missing out, or letting people down. It’s actually better to not fully commit to plans because you can’t predict how you are going to feel, and pushing yourself to do more than you are capable of is damaging in the long term. So, you learn to prioritise your health, get enough sleep, exercise and eat well, and you begin to feel like in some way you have regained some control over your body by doing so, and it feels good.
That leads to owning it. You are not your disease, your disease is just a part of you and you own it. It has helped me to grow and see the world differently; I appreciate the good days, I appreciate when my body cooperates with me and when others support me. I make the most of everything because I know how bad it can get, so I take very little for granted. Owning my disease has made me stronger and I am, gulp, thankful for it.
Pain changes the way you empathise with others, and often my sensitivity has helped me to reach out and connect with people. I am such a sensitive person; I hate cruelty in any form and turning vegan has been the best decision I’ve ever made. I feel great about my way of life and my choices every day. Above this there has been many studies suggesting that a vegan diet is excellent for Rheumatoid Arthritis sufferers, and the more I research into it, the more I realise that you really are what you eat. What I put into my body affects my energy levels, my defence mechanisms, my strength and my well-being, so it is so important for me to eat properly. I have even created a vegan food blog on Instagram and I’ve found that the more creative I am with food, the more I enjoy it and want to try new things.
Let’s circle back to the beginning: it’s not something I talk about much. But this is my life and that is my story, though it is really just a glimpse at my whole journey with Rheumatoid Arthritis. I could tell you about the bad days, needing help in the shower and dressing myself, crying myself to sleep and not being able to hold a pen to sit my exams; and I could tell you about when I went skiing, when I did horse riding for 3 years and when I went rock climbing. The good and the bad days are all a part of living and whether you have a chronic illness or not, you will understand this; you will understand that there has to be darkness to see the light and that the struggle is not in vain.
I really think growing up with this disease has taught me to have patience and understanding for others because you never know what struggles people have on a daily basis, so I make kindness my philosophy, my daily rule.
If you have read this far, thank you… Hopefully my story will shed a light on this commonly misconceived disease. Furthermore, to those who have it, understand that you are on a journey, you can choose how you handle the hurdles but make sure you come out fighting.
