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.
Yasmin, hi!;I am not as young as you,but I have walked in your shoes. I have had JRA sine age 6.i was out of school much of the time. Was educated by tutors mostly.i too walked with crutches as a teen. Also, can only walk shirt distances. When I was younger I had some friends, but like you it was always hard to explain my situation and I was out if school so much.
I am now 59 (I can hardly believe it). But I want you to know with all my troubles and limitations I am msrried, have 2 children and work part time. I have had a number of joint replacements, and use a cane, but I’m still walking.
As a child adults always asked why I was was on crutches and I experienced people complain about my parking in handicapped spot. Again so upsetting.
I can’t imagine how difficult it must have been for you to give up dance!! So sorry. My daughter was a dancer for many years. I know how passionate she was.
I wish you all the best. Please feel free to keep in touch. Jane
Reading your article makes me feel like reading exactly about myself! It’s so weird to hear this coming from someone else.
Send me a message if you want to chat.
I have had arthritis since I was 3 years old and am now almost 23. I totally empathise with how difficult you find it to fit in and your worries with daily life especially travelling and getting around.
My arthritis started in my left knee. I don’t remember the beginning at all. I just remember begging my parents not to send me to school because I was in so much pain. I remember having to ask to be carried when I was too tired to walk and how much it upset my younger sister who didn’t understand why I got “preferential” treatment. I remember learning how to take tablets for the pain by swallowing smarties whole with some water. To start with it was all controlled by ibuprofen and indomethecin. When I was around 6 my arthritis had settled enough that my medication was stopped. Then it came back but into both knees this time. My consultant told my parents that they could either try me on methotrexate or I would have to be in a wheelchair. They chose the medication. I was very lucky that the dose and the medication were just right first try and the arthritis was controlled well enough that I could live an almost normal life. I went swimming every week and I did a lot of cycling. All the kids in my class at primary school knew who my mam was from the amount of times she had to pop in to put emla cream on my arms ready for a blood test after school. When I was around 13 or 14 the arthritis hadn’t been particularly active for quite some time – I hadn’t needed my knees draining or steroid injections into the joints for ages. So the decision was made to gradually decrease my medication until I wasn’t taking any. When I was 15 I’d been totally off medication for a year and had had no flare-ups. We thought I’d grown out of the arthritis which can happen with JIA so I was discharged from the hospital. I couldn’t believe it. No more medication, no more physio or blood tests. No more hospital appointments. I could be normal.
I lived a “normal” life for 5 years.
Two and a half years ago, age 20, I began to get this funny sensation in the back of my right knee. It felt tight, almost as if it was swollen. But the knee didn’t look swollen and it wasn’t sore or hot. So I tried resting which didn’t help, then I tried more exercise which didn’t help either. In hindsight I’d been having problems before I really even noticed – someone I was working with one morning asked me why I was limping and I just assumed it was how I normally walk. Eventually my knee ballooned. It was hot, it was sore, and it was very swollen. I was in between doctors at the time and my GP wouldn’t see me and sent me to the walk-in. I saw the nurse practitioner there and she didn’t listen to my medical history and assumed I had a DVT. She sent me straight over to EAU at the hospital where they did all the blood tests to make sure there was no clot. The tests, as I expected, came back negative. The registrar came into see me and looked over my knee and decided to refer me to rheumatology.
It took a year to be diagnosed. Paracetamol and ibuprofen didn’t help. Stronger painkillers made me sick even when taking tablets that were meant to stop them from irritating my tummy. The ibuprofen made my asthma worse so I got banned off that too. Even steroid injections into the joint only last three weeks at best. I saw my rheumatologist in the May of that year. By August the arthritis was pretty much everywhere and I was in a wheelchair. I’d had all the possible scans and blood tests which all just came back inconclusive. The only thing my blood showed was that my ESR was high. Eventually it was a case of try depomedrone injections – if they worked then I had a diagnosis. They did work and the news was broken to me that the arthritis was definitely back. I was started back on methotrexate. It made me sick a lot so they tried the injections. I got to the point with those where I had to sit on a stool facing the toilet as I would vomit as soon as I’d done the injection (I’d developed anticipatory nausea). The medicine didn’t even help anyway it just made me more ill. The anticipatory nausea was that bad that everything I associated with the injection (even the smell of the soap I washed my hands with or the sight of the box with the needle in) would make me start to retch. The retching was that bad I couldn’t do the injection myself. My final straw with it was when I vomited before I even had the injection. We tried some more medications but they didn’t help either. Then we tried a biologic drug which seemed to help. That was until a month or so ago when I got a thickening of the membrane in my knee which made me feel like I was being stabbed every time I took a step. Apparently it wouldn’t have happened if the medication was controlling the disease enough. I also got one of the more serious side effects of that medicine just a week ago. I’m not allowed to take it anymore. The hunt for something that works continues and I just hope the next medication I try will work.
I don’t get to talk to many people my age who have the disease either and I hope my story will help you to feel like it’s not just you and that someone else understands what you’re going through. Sometimes I feel the best thing someone can say is “me too” as much as I don’t want anyone else to suffer from this truly awful disease.
Hi Yasmin! I’m 27 and have been struggling with RA for a little less than 2 years now. Mine got pretty severe pretty fast. I totally understand how you feel about being judged as a young person who doesn’t “look disabled.” I also understand what it’s like to be the only person your age you know that has limitations. It’s a tough thing to fight. I’ve tried both meds and the natural route. I actually had a sensitivity to turmeric. Taking it upsets my stomach, but I’ve met a lot of others (in online groups) who it has worked wonders for. I follow a totally anti-inflammatory diet called the autoimmune protocol that incorporates lots of anti-inflammatory foods and eliminates known inflammation-causing foods. That has really kicked my swelling in the butt. I also try different herbs and such. You’re not alone! There are more of us out there than you realize. I’ve found a great sense of community online. There are wonderful Facebook support groups. I like Rheumatoid Arthritis Managed Naturally (It took like 2 months for my request to join this group to be approved, but it was worth the wait. Lots of knowledgable people sharing info.), Autoimmune Arthritis Alternatives, Autoimmune Paleo, and The Paleo Mom (those last two are focused mostly on supporting health with the anti-inflammatory diet). Instagram has been another place where I’ve found lots of people who are addressing chronic illness with both western and eastern medicine. Keep going girl! And feel free to hit me up to chat if you have any questions about anything I mentioned.
I have been diagnosed with JIA too. I’m 22 but got diagnosed at 18. As you can understand being diagnosed and classed as disabled at 18 is heartbreaking. It was all instant when it happened. It was just a normal day and we went out for tea and suddenly I couldn’t walk. I’d played football for 10 years previous. All my joints swelled up and I could not physically stand up or hold my own weight. I got passed from pillow to post for a good year. Ended up in hosp a few times with flare ups. Finally got diagnosed a year later and put under a rheumatology clinic. My doctor is fab and has helped me so much over the past few years. I have tried many meds. Tablet forms injection forms infusion forms the lot! Also tried many biological treatments too. I’m currently on my 5 th biological treatment in 3 years. I have a blue badge too. Many people have stared at me getting in and out of the car as if it’s an act. Well no I have to live with this day in day out! Had many cortisone injections in the joints and many times
I’ve had To have my joints drained of fluid. I’ve had so many steroid
Injections this year I now can’t have any more. Just changed to another biological treatment infliximab via infusion. Don’t worry you’re not on your own! And anytime you need a chat there’s
Many people there with same kind of condition.
Sending big hugs!
Your not alone in your fight. I’m 24 and have been struggling with this since the age of 4 (20 anniversary this year yaaayyy).
Ive been on and off heavy medications my whole life and it has recently been advised to me to start one that would make me infertile. Deffinatly not doing that and i explained to the dr this disease can’t take everything in life away from me. My journey sounds alot like yours but add a few stints in wheel chairs.
You go girl.
Hi Yas, it’s good to read how you feel both mentally and physically. I’m lucky enough to have met you and you are inspiring. You cope with so much with little fuss and know you have family for support. I’m sure like them I wish I could take it away bit maybe it has made you the beautiful person inside and out.
You know I understand but I also know it’s a battle you have to fight alone and deal with forever. You are loved by people you might not expect but we are out here…
You are fabulous and I walk beside you if you ever need to vent or scream to a fellow RA fighter you know where I am…. BEAUTIFULLY written. Really impactful, thanks from me too as it says things I want explain to people. xx big love xx
Thank you so much for your responses I can’t believe I’m not all on my own and thank you for your kind words it means a lot, I wasn’t expecting as many people to respond!
Thank you for all your advice! It’s really helped hearing about all your experiences, I will take all of your emails and I hope it’s okay if I can email each of you to have a chat?
Thanks again and best of luck
You are a strong independent woman and I’m so blessed to have you in my life! You are perfect to me forever and always! Love you Yass.