I was diagnosed with arthritis when I was a year old. I was learning to walk, and then one day I just stopped. I would keep crying all day. My very worried mum took me to the GP, who said it was rheumatoid arthritis. He immediately sent us to a rheumatologist.
I was lucky to be diagnosed so quickly, as symptoms can be things like fatigue — which means it’s easy to brush it off by saying take some vitamin D, get more sleep and you’ll be fine.
They put me on aspirin — the cure of all ills, of course — and after a year on that, I got on anti inflammatories. So I was treating the symptoms and inflammation, not stopping the disease. The disease was carrying on but I wasn’t in pain.
After the diagnosis, every night my mum would have to bandage my legs with splints on, to try and make sure they stayed straight. Everything was painful as I grew up: walking, doing anything with my hands… I couldn’t write long, I’d have stiff shoulders, my hands would often swell up, I remember writing exams with a table lined with pens and painkillers! I never played sports. At school if I wanted to join activities, like dance for instance, I was told I can’t, and that I’d have to join the handicapped version of dance sessions.
Another effect was that as I had arthritis so early, my jaw didn’t develop. So I was bullied at school, and called a hamster, a fat face.
The medication didn’t help the teasing. The steroids caused swelling in my face, so I was often also called moon face. But I stuck to going on with my life and tried to ignore the comments as much as I could.
At about 7, I was told I had to wear these massive splints on my hands. So sleeping wasn’t easy, and neither was walking into school with splints and bandages up my arms.
One day I came to a turning point and I don’t really know how — I just turned 16 and I thought I’m fed up of being teased and pushed out. So when I went to university I thought as none of these people knew me or the geeky girl that was picked on, it was time to wear my own stamp. I started organising social activities, started being the bouncy one. I wanted to dispel illusions that I was geeky and horrible, because I wasn’t. Slowly more people started to see I was actually a person, and that gave me more confidence.
I had both my wrists replaced when I was 18 because the disease had damaged my joints so badly they replaced it with titanium — so I can’t bend my wrists. Which meant four months before my final exams I had to learn to write again because you are used to writing by bending your wrists. I spent my 18th birthday in plastic casts. But I found different ways to do things.
Only when I went to a new rheumatologist at 18 was I put on methotrexate, which works in the same way as cancer treatments (but in greater dosage), and prevents the disease from developing and growing.
I consider myself lucky because I’ve always had the disease. There are patients who used to be tennis professionals, who used to be so active, and that’s suddenly all taken away from them. When you are defined by a certain sport and suddenly you can’t do it, the psychological impact is harrowing.
I met my hubby Sam, in New Zealand; we were both doing a year abroad. I remember someone recently asking me if I had told him about my disease — I thought that was really funny. I mean, you’d think he’d notice it — you’d hope he would! The cultural perception here about arthritis isn’t great. A woman recently asked me “why would anyone marry you if you have the disease.” She said she’s not allowed to go out in public because her parents are worried people will see her with the condition.
Sam and I were friends first, and I’m not a person to hide my disease, but I also don’t walk around with a badge saying I have it. It really didn’t make a difference to him that I had arthritis. He was and is a great support, always stepping up immensely when I’m having a bad day.
And then we decided to have kids.
I knew I’d have to go off some of the medication as they prevent cell reproducing, which of course won’t work when you’re trying to have a baby! So you have to be off them 6-9 months. My body didn’t like that unfortunately, and I had a massive flare, which is when the disease becomes more active. So I had to get back on my meds for six months, then come off it for another 9 months before I could try and get pregnant. The whole process until I delivered took three years. But I also had to make sure I didn’t get stressed about that, as stress induces flare-ups. You have to be transparent with your docs — your cardiologist, rheumatologist, obstetrician, all need to coordinate.
I was very lucky during my pregnancies though — my arthritis went into remission. It was wonderful. I was able to breastfeed too, but after eight months my body had had enough, and I had two big flares. Doctors said I had to go back to taking my meds. I remember being in tears that night, knowing I was breastfeeding for the last time. It’s very emotional to be told you can’t do something for your kids anymore.
My boys Oscar and Arthur are starting to understand about my limitations. My two-year-old Arthur knows if he’s crying in the car he has to stand up if he wants mum to carry him. But he’ll still come down the slide at the park and start crying so that I pick him up. My 6-year-old understands that mum can’t play many games. Now they know they have to do the more active stuff with daddy and stuff like homework and bedtime stories with mummy. We try and find things we can do together as a family.
I managed to learn to drive manual. But there are days when I can’t do anything, let alone drive; I feel so tired and it’s like this constant pressure pushing down on my shoulders. Everything hurts and it feels like you’ve been in a car crash. I can’t move anything and it all feels heavy. But I do things I can do and try not to focus on what I can’t.
Exercise has helped me cope — I work on the mentality that if you don’t use it you lose it. I can’t straighten my arms, and it’s probably because when I was in pain before, I didn’t move it much. So I have learnt that it is important to stay as active as I can, and find the right trainer to work with. The lady who runs the Pilates class I attend in the Meadows has experience with people with disabilities, so she makes sure during the exercises she’ll give me options to do a certain exercise some other way compared to the others in the class. I also sometimes do PT or bootcamp. Everything hurts during it, but afterwards I feel better.
Of course, it’s all about finding the balance and listening to your body — if you have severe flared joints you shouldn’t exercise. I don’t push it as it then causes more problems.
Lots of people with arthritis tell me they can’t do anything. No, you can do something. Whether it’s chair yoga where you’re sitting and doing simple stretches, or breathing. It’s also psychological. If I had given up, I wouldn’t have snowboarded, or skydived, or had two children. It’s your life and you simply have to make the most of it. It’s not the end.
The doctor said I can’t ski, so I learnt to snowboard — my knees aren’t going anywhere then.
My parents were amazing through it; 36 years ago there wasn’t access to lots of info. My dad said recently that he never thought I’d have a full life or have children.
I’m lucky that my husband is very hands-on with the kids. When I have my bad days, most nights he takes over.
It makes me happy to see people in the UAE are opening up and that there is more of a conversation happening around arthritis. Case in point, 900 people registered with us for the World Arthritis Day this year. Our fashion show has people with arthritis as models, and it’s a day where everyone really enjoys and feels good about themselves.
I’ve seen that in the UAE people are afraid of telling their employer they have the disease. I say we’re better employees because we are more determined to prove ourselves! I honestly feel being a working mum is more of a challenge than having arthritis.
My disease is quite active, I haven’t tamed it yet. I’ll go to a waterpark now with the kids, go on 1 or 2 rides and next day feel horrific. I can’t strain my elbows, I can’t turn my neck much. I take painkillers if I need to.
The ideal diet is to be vegan. I’m a foodie, but maintaining a healthy weight is necessary to avoid more pressure on joints. Eat moderate portions. Don’t eat inflammatory foods like red meat. Try the elimination diet — find the trigger. You are what you eat. Try and find a balance.
I try find the energy every day. I did not think I’d be able to carry my kids, but as they say as a parent you find the strength. We have made modifications as a family to make life easier. A car seat that turns so it’s easy to get the kids in as I can’t bend round corners… different kinds of utensils that make it easier for me to handle or open bottles etc… a higher cot.
The link between arthritis and depression is well known. No one looks at the psychological impact. There does need to be more mental support around the disease. No one likes to be told you can’t do something, like I was with breastfeeding. But you just have to look at it positively and work on the mentality that I was given this condition because I can deal with it. Don’t ask ‘why me’.
Take control beyond medication — rest, listen to your body, keep exercising, eat healthy. There are days when I can’t get out of bed but I know that is not going to get me anywhere. Remember, stress is a large trigger too.
Life’s for living, you are not a disease; don’t let it define who you are.
As told to Sangeetha Sagar