“It was a relief to know why I was in pain for so long.”

02 July 2020
Melissa with a teapot and drink and outside in the sunshine.
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Melissa, 20, is a medical student at University of Dundee and is living with seronegative inflammatory arthritis. She shared her experiences of being newly diagnosed and studying for university during lockdown.

I was diagnosed in November 2019, though I had symptoms that built up gradually for a year and a half before that - aches and pains in various joints, stiffness in the morning and struggling to open drawers.

Once, I was at a nightclub and people brushing past me was agony. The next day, I couldn’t get out of bed until 5pm. A few days later I booked a doctor’s appointment.

“The receptionist said the tests were simply negative initially, which wasn’t helpful.”

Seronegative inflammatory arthritis means the usual signs of rheumatoid arthritis don’t show up in blood tests. So, the receptionist said the tests were simply negative initially, which wasn’t helpful.

I was a first-year med student at the time and, having an understanding of how stressful the job can be, I didn’t want to bother the doctor any more.

Having back-to-back lectures five hours a time wasn’t making things any better. It’s not what you want when you’re in pain.

It’s difficult to concentrate and can have a big impact on your mood. I remember sitting in an immunology lecture where rheumatoid arthritis was being used as an example, and a friend turned to me and said, “That sounds exactly like you”.

I went back two months later because the symptoms were still there, and to see if anything had got worse.

The first time arthritis was mentioned to me by a doctor was in this second appointment. I was given anti-inflammatories, which did help for a bit and it seemed like it was gone for a while. But when I stopped taking them it got worse.

“It was a relief to know why I was in pain after so long.”

I left it until summer to see a physio – I thought, “there couldn’t be anything seriously wrong.”

After an X-ray I was referred to a rheumatologist, who told me I have arthritis. It was a relief to know why I was in pain after so long. Knowing it wasn’t psychosomatic was good – I was glad it wasn’t all in my head.

Steroid tablets and DMARDs have really improved things. I’m off the steroids now. Sulfasalazine is still working but hasn’t completely settled things down. I still wake up stiff and in pain sometime, and my shoulders cramp up.

“Like everyone, being stuck inside is maybe getting under my skin a little.”

Uni was cancelled before lockdown, so I moved into my parents’ house. There’s not much solitude for working. I’m sitting next to my dad every day, and he does a lot of work calls.

My timetable is usually intense as a med student. We don’t really have classes anymore because most lecturers are doctors, and they’re doing front line treatment.

There are not many resources for learning in comparison to before. It’s harder to keep on top everything.

“I’m trying to keep a routine going, but I’m not being super strict with myself.”

Everything has changed a lot. I start work a bit later. I’m not overly forcing myself to do extra stuff. I think this is why my arthritis isn’t too bad right now.

I have fewer issues with stiffness in the mornings, which you usually have to get through early in the morning. Now, I can go at a slower pace and it’s not as bad.

“Not forcing yourself to accomplish lots of things is important. It’s bad to try and be a superhuman sometimes.”

Before I was diagnosed, I had lots of tiredness and exhaustion. Other than uni work, I couldn’t do much. I had to get work done and then I was too tired to see friends.

Going on a night out would wipe me out for three days. Drinking can cause flares, so student culture doesn’t really mix with that.

I missed out on plans a fair amount. I think it’s helped me get used to living in isolation more easily than a lot of people. It’s good to keep in touch with your friends and avoid isolating from other people all together.

I’m newly diagnosed so I’ve been having quite frequent appointments. This helps get everything under control at the early stage. I’ve had a blood test delayed and a rheumatology appointment cancelled. Not having these is difficult and there’s a long waiting list to be seen.

When we first went into lockdown, I was very stressed about a mix up with my prescription. My dad had to drive to Dundee (where I study) to pick up a prescription.

“It’s not like being home for summer. I’m still working a lot, but I’m not around the people I’m usually with for that, which is odd.”

I’ve always found it difficult to work back in my hometown. I’m used to being independent and not being on another’s schedule.

I have relied quite a lot on my singing group – we’re a tight group of friends. For normal concerts you do duets and trios and learn them closely together with friends. But now we’re doing it all online and it feels a bit more distant.

Not being able to dance with the concert group means I do less exercise for my joints.

I’m trying to make use of the daily exercise allowance, for example, when I was fully self-isolating I was doing stretches. I also take hot baths and sleep with hot water bottle every night.

“There’s a perspective that arthritis is a natural part of ageing, but it’s not.”

It’s weird to be home because my medical friends know what arthritis is already and how it can affect all kinds of people in different ways. But my family and friends at home aren’t medics, so I have to explain it a bit more.

My family haven’t really seen me much with arthritis, so they’re not fully aware of what it’s like at its worst.

There’s a perspective that arthritis is a natural part of ageing, but it’s not. This means people in general don’t appreciate how painful it can be and the impact it can have.

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