Being a young 24 year old women, I have what they call “the old peoples illness” I was actually diagnosed with Juvenile Arthritis when I was 11 years old after competing in professional dancing. Arthritis is a long term condition that causes inflammation of the joints which also causes severe or mild swelling and restrictive movement, stiffness and pain. It means that the immune system that should normally fight infection- attacks the cells that line your joints.
One day I just woke up and looked down at my ankle and it looked like an elephants leg, it was so swollen I couldn’t even stand or lean on it. When I tried to get up and walk I was in excruciating pain, I cried out for my mum and she was pretty horrified to see her little dancing diva with this elephant leg. We just couldn’t understand what is was or why it was so swollen, my mum took me to my doctor and I was then referred to a consultant at the children’s hospital where I had blood tests and x rays and lots of other things.
I was quite quickly diagnosed with Juvenile Arthritis, they said that I most probably had it since birth but something triggered it off, maybe my dancing. I didn’t really understand fully what this was as I was so young I just took every day as it came. My parents were shocked as to how such a young child who was fit and healthy could have this, it doesn’t run in the family either.
Struggling at school
I had to give up dancing and also missed a big chunk of secondary school, I was just so poorly I was unable to walk without crutches. I would go to secondary school and dread it, dread the children asking questions and me having to explain that I have arthritis. For them to just say “yeah right, isn’t that what old people get?” I found it so embarrassing telling people why I had crutches and why I was poorly all the time, so it began to give me anxieties at school. I would always just want to stay at home
I did finally move to a different school in year 9 closer to where I lived, at this time I was a little bit better and was kind of in a mini remission. I went back to dancing and enjoyed it, it kept me fit and made me feel normal again, and I kind of fitted in at school but not hugely. I still got bullied, mainly by boys. I would still rather not go though.
I had a few friends that I tried to fit in with as I was still the “new girl”. Before I left the last year of school aged 15- 16 I became ill again, this is called a (flare-up) this time it was my knee, it was so big it just didn’t look like it was part of my body, I had to stop dancing once again. This time I was advised by my consultant to try medication.
Effects of Medication
So I started to try different medications that had god knows what in, my parents thought it would help me and they wanted to try anything. Certain ones were just not agreeing with me, I would have such horrible side effects that it actually made me more ill.
I would experience hair loss, very bad stomach problems, I had to take other tablets on top of those to line my stomach, and I had shortness of breath and just in general felt so ill.
There were some medications where they just did not work at all, I have tried over 5 or 6 different medications throughout my teens.I would sometimes refuse to take them and that would make my mum worry more, my very last resort was to try a different type which was stronger and was my worse fear. They wanted me to try an EpiPen which is an injection every week, this is what diabetic people have to use.
Of course I did not want to do this to myself, I tried to many of times but I just couldn’t bring myself to stab myself in the stomach. So my mum or dad had to do this for me, and it was so sore with a long burning sensation after, I dreaded the day I had to do this. I tried this for quite a while, and again I had no real results and nothing changed, I was still in lots of pain but just with an extra pain of having an injection as well.
I finally stopped this, and by this time I was old enough to understand what I had, and also old enough to make big decisions, having help from my dad who researched everything online.
I finally decided to never take western medication again.
How it impacts my life
There are a lot of things that I’m not able to do, one of the main things I have always loved doing is dancing and not being able to do this is very hard for me. I loved Latin and ballroom dancing, I loved the glamour and the dance costumes, and I just loved everything about it. It also kept me very fit and really slim, it gave me confidence in myself.
Having Arthritis definitely restricts me from keeping active, I have tried to go to the gym so many times, in fact I am still a member because I feel like one day I will just be able to do lots of cardio and weights, I have put on at least 2 and half stone since stopping dancing, being a women I get conscious about the way I look.
Having a partner that is very into fitness and sports can be hard as I just can’t do the same things that he does, and can’t always relate to his experiences. But he is very supportive and has always encouraged me as much as he can. I am unable to walk for long distances or stand for a long period of time, I have to keep sitting down, so trying to find a job that won’t impact my health or affect me is hard, I can’t bend down very far and I cannot open or close things sometimes such as taps, tins, holding something heavy etc.
I also can’t really go out partying or clubbing like most of my friends do.
I find it hard standing for a long time or dancing on my feet for a while. I’m normally ill the next day from the effects of it, I can’t wear lovely heels that girls my age wear, it can be hard to try and fit in.
When I get a cold or the flu, this will last for nearly 3 weeks due to my immune system being low. It takes me a while to get better, so this isn’t always ideal when working as employers aren’t always understanding about it.
When my partner wants to arrange a day out to London for shopping or sightseeing, which is one of our favourite things to do, I find it very hard walking around as it is such a big city everything is so far from each other. I often have to remind him to slow down for me, so we have to try and find nearby cafés so I can sit down for a while.
I have to always make sure I have ibuprofen tablets with me, although I try my best to avoid taking them, but by this point when I am in such pain I don’t really care.
It helps that I can drive and have my own car, so we now drive up to London and try and park outside where ever we want to go so that I don’t have far to walk.
Living with a disability
Having a disability I am entitled to having a Blue Badge for my car, this is what quite a few elderly people have. This means I can park where I want for pretty much how long I want, this has helped me so much, I don’t know what I would do without it. It isn’t always simple though, I get so embarrassed putting it on my dash board I am very conscious about why people are staring at me, and I have a reason to.
I have had so many people look at me and give me dirty looks, as if to say “why are you parking in a disabled space?” I have had old women come up to me asking if it is my badge that I am using, I have had people come up to my window and give me some grief until I have to explain myself to them.
I feel so judged sometimes, I have even had a police officer come up to me and question me, asking why I am parked on a double yellow line outside a shop, he had a bad attitude towards me, and then asks to see my badge and again I have to explain to him that it is mine and what disability I have. Luckily my partner asked for his badge ID number and told him we would be complaining.
I just find people to be so rude and just very ignorant towards young people, just because I do not look physically disabled.
I have had a most recent incident that led to a big argument and upset both me and my partner in an Asda car park, a lady was parked up in the disabled parking bays but she was just sitting in her car. I parked my car in a disabled space and got out with my partner, the lady then gave a very obvious judgemental stare at us, leading to my partner to say something to her, he asked her what she was looking at? So she shouted back that I did not look disabled and was laughing at me, I did stick up for myself and felt that I had said my point. Other people in the car park couldn’t believe what she was saying either.
I just felt so angry that people can be so ignorant and judgmental about disabilities.
After having two bakers cysts at the back of my knee, both times were in the same knee. This is a cyst that can be the size of a golf ball that forms at the back of the knee when the tissue behind the joint becomes swollen and inflamed. It causes a lot of pain in the knee and calf, fluid on the knee, and locking up. In rare cases they can rupture resulting in fluid leaking down into the calf.
This was my last major (flare up) I had to go to A&E a couple of months ago, this was the most uncomfortable feeling I couldn’t extend my leg straight at all so again had to use crutches. I thought they could drain the fluid from the cyst with a syringe again like the last one I had, but apparently it is now very dangerous and they do not do this anymore.
So it was a wasted trip, and I then had to wait for the nearest available appointment to see my consultant she recommended that I have a cortisone steroid injection which is injected into the bone. This also is so painful, but again by this point I was like “give it to me now!” I have had these a few times in the past, they are just a quick fix to help my pain and swelling go down. And it’s also my last resort, I will always try and avoid it.
Tumeric – the wonder herb
I have done a lot of research into herbs and foods that are natural anti-inflammatory with the help of my dad who is a big fan of researching about health and wellbeing. About 2 years ago my dad suggested something to me that I never thought I would try in a million years. He said that he’d had a long read up online.
My dad discovered Turmeric is a really good inflammatory, it is a herb that is mainly used in Indian food such as curry’s, we found a little concoction that has literally changed my life.
I drink turmeric tea nearly every day, this may sound bizarre and quite disgusting, but it doesn’t taste of anything really. This drink consists of simple ingredients; ¼ tsp of ground turmeric powder into a mug, along with, a little bit of grated ginger, or ground ginger, hot water and stir together and then add a sprinkle of pepper (this activates the turmeric to work) it really isn’t that bad to drink. I drank this drink every day for about 2 months, and I was just testing it to see if this was going to be true.
After about 2 months I started to see instant changes and results, my swollen joints went down a lot! And my pain was nowhere near as like before, I had a little bit more energy and I basically ended up relying on this drink every day for about a year.
I started to cut it down a little bit as I felt like I didn’t really need it as much as I did, as I seemed to have been doing quite well, I felt well in myself. Don’t get me wrong this year I have had a bad (flare up) but that was inevitable as I had personal circumstances that affected me leading to a bad flare up, and id also cut down on the herbal drinks.
But I have been back on the turmeric drink everyday again and I am slowly starting to see results again.This is not a cure and it won’t make the arthritis go away. But it helps a lot, as if it is putting the illness on pause, (remission).
I really want to make other young adults aware of this herbal remedy and just go for it, just try it. It’s not going to hurt to try, you have nothing to lose. And to be open minded with other remedies.
I am yet to try out some others that my dad has researched, I have also noticed that swimming has helped my joints with the stiffness and pain, it just takes that edge off a little bit. I try to go about 3 times a week, and I noticed when I hadn’t gone for a week or so I’m in a lot of pain again, so swimming definitely helps because it is low impact and it is great exercise for you if you aren’t able to go the gym like me.
I still haven’t met or spoken to anybody around my age group who suffers from arthritis, I don’t know anybody.
I think it would be great if there was an online forum specifically for young people with rheumatoid arthritis that are just looking for advice or a chat so others can feel they are not on their own and so we can relate to each other. If you are in the same situation as me, I would love to hear from you.