A week in the life of...Sophie
For World Arthritis Day this year, we wanted to share a little more about what life is like for a young person with Juvenile Idiopathic Arthritis (JIA). We have several stories of children and young people with JIA on our case studies stories page including Sophie's story. Sophie's JIA story is an incredibly inspirational one of overcoming the odds with the challenges that she faced because of her JIA to follow her dream of becoming a hairdresser.
But there is another side to the story too... the one that fewer people get to see. The "hidden" side of JIA that children and young people endure week in, week out, in order to live a relatively "normal" life. Sophie has been sharing some of these "behind the scenes" insights into living with JIA on her Instagram feed recently and with her kind permission, we are posting it here to raise awareness on World Arthritis Day.
Our vision is a world where no child or young person has to suffer from arthritis so we hope that one day stories like this will be a thing of the past, but in the meantime, raising awareness is so vitally important to break the stigma, help those with JIA feel less alone and to improve diagnosis times for those awaiting diagnosis.
Thank you Sophie for so powerfully and poignantly sharing these insights into your life with JIA. Please remember that this is Sophie's personal story so always consult your own doctor and medical teams for medical advice.
Over to Sophie...
Day 1: Breaking the stigma behind JIA
What does JIA stand for?
J is for Juvenile meaning that you were diagnosed before the age of 16.
I stands for Idiopathic meaning that the cause is unknown.
A is for Arthritis which literally means inflammation of the joints. For some children and young people with JIA, this can be one joint, for others it is many. You can find out more about the different types of JIA here.
Is Arthritis like what my Grandma has?
No. JIA is an autoimmune condition meaning your immune system is in over drive causing it to attack your body which causes inflamed painful joints. The type of arthritis that old people tend to have is usually osteoarthritis caused by wear and tear of the joints.
Is there a cure?
No, not at this moment in time. Young people with arthritis including myself tend to have treatments to manage their condition. I’m personally on 3 different injections a week. These injections are small amounts of chemotherapy, which lowers your immune system, which help to stop your body attacking your joints and in turn can help with joint pain. However, these medications can cause such bad sickness and side effects. It can cause liver damage too so that can be a big worry for young people taking these harsh medications, including myself. That's why regular blood tests are also important to check the liver to prevent liver damage.
So do just your joints hurt and that’s it?
This is such a common misconception. Yes they hurt. But JIA isn’t solely affecting your joints. It can affect your organs with certain types of JIA or as a result of the side-effects of medication. Mine have been affected in the past. Uveitis which is inflammation of the eye can also occur with JIA so regular eye checks are vital. Also arthritis can cause extreme fatigue and tiredness meaning your weekends could solely just be recuperating ready to do another tiring week. So if you have a friend or peer with JIA, please be their support system. It can be so isolating not being able to do much as you're just so fatigued.
You don’t look like you have anything wrong with you!
Please, please never say this to anyone with JIA or anyone with any invisible illness as this can be the most hurtful thing. Personally, I find it so infuriating as people don’t offer support and just assume everything is okay. When really it’s far from it. Daily, I wake up with stiffness, I feel sick 24/7 from medication, I feel constantly tired no matter how much sleep I get, my blood sugar feels like it’s on a roller coaster, which is not fun. So please never assume anyone is okay just because they look it, don’t be afraid to just ask.
I'm writing this in the hope that it can even help just one child with JIA.
Day 2: Chronic illness awareness day to day
Today I feel it’s important to give a little insight into my life battling JIA. This is my personal experience as I can’t comment on what other people are feeling, but some young people with JIA will probably relate to this.
JIA is often confused for just having a little ache and that’s it. But people don’t understand that sometimes it can feel that it’s controlling your whole life. For example, sometimes I can’t go out and do something that I want to do. Or sometimes I can't complete a piece of work fast enough and people just assume that you are just being lazy and dramatic and that JIA isn’t that big of a deal. I really think this attitude is ingrained into society and this really needs to change.
So I’d like to give you a little look into a day in my life…. On a daily basis, I wake up and I take my 17 steroid tablets. Then I take my folic acid, an anti-sickness medication, and a tablet to help protect my organs from the side-effects of medication. I also take a strong pain killer called naproxen. Next, every single morning I have to do my physiotherapy exercises, to help keep my mobility and strength. Then before I leave the house I always have to check my blood sugar as my medication can make it go really low sometimes. Then I go to work, I sometimes need to take some ibuprofen on a bad day to help ease the pain at work.
After work, I go home and I usually do my two injections before dinner as I need to watch what I eat on injection days as I get really bad sickness. After my injections I usually have a plain dinner as I am often sick. It takes such a big toll on my life as I would rather be out with my friends but I can’t because I feel absolutely rubbish and have to stay in bed.
Then I take another 2 tablets to help protect my organs. Then right before I go to bed I check my blood sugar again as it can be extremely dangerous to go to bed with low blood sugar. I also have Gem my dog sleep beside me as she can detect low blood sugar throughout the night, to save something bad from happening to me.
As you can probably understand from this, JIA takes a huge toll of my life, some days are good days and some are bad. But I just try and live life to the absolute fullest that I can.
Day 3: How things are over the course of a month
Yesterday I shared what a typical day living with JIA is like. But today I’m going to share what a typical month with JIA is like and share about hospital appointments, and how difficult it can be to have all these hospital appointments as it can be so overwhelming.
One month can completely different to the next in terms of appointments so I will share about the month of August as an example. Every 3 months I have to get my eyes checked, and so do many young people with JIA, as there is a risk of developing uveitis which can cause blindness which can be absolutely terrifying. I also had my 3 monthly check up with my rheumatologist. This is when she does an in-depth check of all my joints, adjusts any medication dosages and makes any referrals to other departments. I also go to the physiotherapist every 2 weeks to help improve my mobility, and help how I walk. Specialist nurse appointments are on the phone and/or in person every month. This is to check how I’m getting on with my weekly injections. Blood tests are every month to check for any liver damage. I also have had a podiatry appointment to have some insoles fitted to help correct how I stand due to damage from my JIA.
As you can probably imagine, this is a lot to deal with and take in for myself and other children and young people with JIA. I used to find it so hard to come to terms with and I was absolutely sick of going to the hospital so much. I've had so many hospital appointments that I don’t even have to say my name anymore at reception they just know who I am! I still do find it difficult sometimes, when I just want it all to stop and I don’t want to have medication anymore. But everyone with JIA has those days! One bad day doesn’t mean a bad life. Remember you are worth it, keep fighting your battle. You are stronger than JIA.
Day 4: JIA at school
Today I feel it’s important to spread awareness of “silent” and “invisible” illnesses. So often, and too often, silent illnesses are played down and people are just seen as dramatic. Which is so far from true!
Personally I struggled with not getting enough support when my JIA was at its absolute worst. I was not even able to move my fingers in the morning as they were just locked into one position. During my school years, my parents would have meeting after meeting to help get me support at school but it felt as if school just didn't care. I had a teacher shout at me because I wasn’t writing fast enough and because I had to take breaks. I was always very shy at school so I felt too embarrassed to speak up. Yet they already knew I had JIA so I shouldn’t have had to. I had occupational therapists going into school and booklets given to school explaining what JIA is and how to offer the correct support but no support was offered to me.
My whole school life was an absolutely horrible experience. I just felt so frustrated and I started to just act like I was okay when I really wasn’t. I used to write and write and my wrists would be in so much pain. During secondary school, I used an iPad sometimes instead of writing but I used to be so embarrassed to use it even though I shouldn’t have been. But because other people couldn’t see that anything was wrong with me, they just thought that I was faking my condition, and I used to get asked why I was using the iPad. I became too scared of judgment and people thinking that I wasn’t telling the truth that I started to avoid telling others about my JIA.
As with many of my experiences telling people about my JIA people didn’t believe me and didn’t believe that children could get JIA. Even now, I hear people say that they don't believe that children can get arthritis and I get told that I'm too young to have arthritis and it’s absolutely infuriating!
Just because you can’t see that someone has JIA, it doesn’t mean it’s not there. Be kind.
Day 5: Things you may not know about JIA
Things about JIA you probably didn’t know!
JIA can affect your eyes. In some cases, JIA can cause uveitis, which is inflammation inside the eye (you can find out more about uveitis here). Left unchecked and untreated, it can threaten your sight so it’s really important to get your eyes checked regularly if you have JIA. I get mine checked every 3 months at the hospital.
Many children, including myself, take immune-suppressing drugs. This means that we are at increased risk of catching infections. Even a common childhood illness such as Chicken Pox can seriously affect a child with JIA who is on immune-suppressant medication.
It isn't always easy to get diagnosed with JIA. Personally, I was showing symptoms when I was about 7, which included not being able to move my fingers in the morning. I was extremely skinny and frail looking and I had swollen joints. It took three years to get a diagnosis, and by the time I did my arthritis was so bad. When I first went to a rheumatologist, they said it was one of the worst cases they had seen as I had over 40 joints affected. This delay in diagnosis can be a similar experience for others with JIA too.
One of the misconceptions is that juvenile arthritis stops being juvenile arthritis after you turn 18. If you were diagnosed with JIA before the age of 16, your diagnosis stays as JIA for life.
In the UK, around 1 in 1,000 children and young people under 16 have been diagnosed with juvenile arthritis. Yet there is still a great lack of understanding and support for those with juvenile arthritis! This needs to change! I hope this post can help someone understand JIA that little bit more and can offer the support and understanding that is so desperately needed.