“You’re always battling yourself… Should I do this? Can I do this?”15 July 2020
Syeda Hana, 23, is a personal trainer living with rheumatoid arthritis. Last year, Syeda Hana was too unwell to fast for Ramadan. Here she shares her advice for others with arthritis who may have difficulty fasting and tells us about her journey to becoming a personal trainer.
“When they tell you these things as a young person, how are you supposed to deal with it?”
When I was younger, I had a lot of pain in my bones, but I was told these were growing pains. I was diagnosed properly at age 16/17. I was going to the doctors with my mum all the time because I was experiencing pain.
One morning I woke up with excruciating pain in my left leg. I thought maybe I had banged it on the wall and my mum took me to A&E. That’s when they told me I have rheumatoid arthritis.
I went back to the doctors and my GP referred me to my rheumatology team who are great, it’s important to have that support.
“Both the physical and mental health combination of my condition is overwhelming.”
I have a few very close friends who are very accepting of my condition. When I tell them I’m not feeling good, they’ll try to adapt our plans. It’s the same with my family, they do everything they can when I’m in any sort of pain.
When I was first diagnosed my mum was quite emotional; my brothers and sisters all do their best and are supportive. I’m constantly questioning myself but I surround myself with people that are positive and support me.
“Even now, I still have moments of ‘why can I not do this it’s so frustrating? Just why?’”
It was a really long hard process to come to terms with my diagnosis. At the beginning I don’t think I accepted it fully because I was trying to live my life the way everyone else was. But I had to start considering things; if my friends were out, would I be able to go?
If I was going to go on a train with friends and they had no seats, would I be able to stand? I used to cry to Mum a lot, I just didn’t get it and there was a point where I wanted to drop out of college. I still don’t know when it’s going to fully settle in.
“Being a personal trainer is still quite difficult as I don’t know when a flare will come. I try to create structure but have to accept when I’m in a flare.”
High school was difficult in terms of sports because if I did too much - that was it! I had my appendix taken out and after this operation my rheumatoid arthritis worsened, and my knees and ankles were swollen every day.
One of my most depressive states was after I left college. I was in pain and I wasn’t contacting anyone.
In college, I had been going to the gym once or twice a week and was always interested in how exercise helps the body. I looked up courses online, spoke to my mum and said I wanted to do a six-week intensive personal training course.
My medication slowly started to work and if wasn’t for that, I wouldn’t have been able to do it. I took the course after finishing college. It was 8am-4pm every day and Mum was there for me to motivate me. My family helped me push myself to get the qualification. They were happy to see me doing something. My love for the gym and passion for sport motivated me.
“Wearing a headscarf and being a Muslim in the gym, I knew a lot of people would need advice from me.”
I started working in the gym and was thinking about who will employ me as a personal trainer.
I post workouts and personal records on Instagram and now post about rheumatoid arthritis. I never used to as I saw it as a setback.
Now that I do, Muslim women in particular contact me saying I’ve inspired them. I don’t see myself as inspiring as I’m just posting my journey. The response makes me quite emotional.
“When your whole community is doing something and you’re not doing it, it’s difficult. Not feeling the spirituality of it all.”
Last year, I was on methotrexate and it was causing me a lot of sickness. I was in so much pain that I couldn’t fast for Ramadan. My rheumatologist brought me in for an assessment and I qualified for a biologic medicine.
Since last September, I have been taking a monthly drip of tocilizumab. The first time I went to the hospital for my drip I was a bit shocked not to see other young people.
In Islam if you’re not well you don’t have to fast but when your whole community is doing something and you’re not doing it, it’s difficult. Not feeling the spirituality of it all.
If you can’t fast, try to involve yourself in different things. When not in lockdown, do things with the community and get family involved, give food to those who are less fortunate, say prayers.
If you don’t prepare yourself for the day, you’re not productive, so getting fresh and ready can really help. This year, all mosques were closed. Normally we open our fast in the evening when the sky is dark blue. It was a bit odd that we were not doing this but I’m grateful to have family to open fast with.
“You’re always battling yourself… Should I do this? Can I do this?”
My Mum said I’m very strong, but I need to relax a little. I know that if I don’t do things now, when will I do them? I think I’m always going to push myself.
These illnesses are invisible; a person seeing me on the street is not going to know what I’m going through. When I walk into the hospital I look like a healthy human being.
Someone messaged me after seeing a video of me doing squats saying, “You can’t have arthritis doing a squat like that, I can’t bend my knee!” Everyone is different, and you can’t see what someone is going through.
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