“I’ve learned the value of taking care of myself,” Tarika reflects on being newly-diagnosed

“When I started experiencing symptoms again in 2023, I think I knew that it would be MS. There was also an element of feeling validated — these symptoms were real and there was in fact a reason for them.

“I was initially diagnosed with optic neuritis in 2020, which I would say was the beginning of my MS journey. I wasn’t officially diagnosed with MS until April 2023.

Tarika got her optic neuritis under control with steroid treatment and experienced no other symptoms until a week after her wedding, three years later.

“I got married in March 2023 and about a week after my wedding I started experiencing slight changes in my vision again, very subtly. At the time my neurologist said nothing was coming up in any visual tests, so to just to wait and see if I had any other episodes.

“Within a few weeks of that appointment, I started experiencing tingling down the right side of my body, starting at my fingertips, and slowly spreading through my entire right side.

“I realise now that the vision issue was my first episode, and my second ‘relapse’ was after my wedding three years later,” Tarika said.

After feeling confident that her vision issues were isolated and not a sign of something more serious, Tarika said the realisation that she had MS was difficult, although in some ways unsurprising.

‘“It’s so disappointing”, I think that was my initial reaction. The further I got from 2020 without a relapse, I started feeling more and more confident that it wasn’t MS or anything serious.

“When I started experiencing symptoms again in 2023, I think I knew that it would be MS. There was also an element of feeling validated that these symptoms were real and there was in fact a reason for them.

“Strangely enough I actually feel quite lucky that I had a sort of direct route to diagnosis, as I know this can sometimes take a very long time.”

Reaching out after diagnosis

Tarika says, although it was difficult at first, reaching out and talking to other people living with MS was important during the first few months after her diagnosis.

“Talking to people who are further along in their journey has been really helpful, not because they’ve had the same experience but because they’ve got insight and knowledge.

“I know it takes a while to get to the place where you’re happy to talk to people about MS, it can be jarring initially, but I found it very helpful.

“I think talking to people with MS fulfills a role in your life that no one else can fulfill,’ Tarika says.

“There’s no right way to tell people you have MS, I’ve noticed some people tell everyone straight away, some people struggle to tell the people they’re closest to for a long time. Be prepared that along with the support you get from telling people, you will also get misplaced advice and over the top sympathy and catastrophising.

“Be in a place where you’re ready for that and that you have more neutral supports in place, like my husband who I can vent to.

“Everyone’s experience of MS is different. Most people who don’t have or know anyone who has MS, or a neurological condition don’t quite understand that MS looks different on everyone. Not just with respect to their symptoms, their treatment, the type of MS they have. There’s no one size fits all.’

Finding a sense of control amid uncertainty

Tarika reached out to MS Plus shortly after her diagnosis and began accessing a variety of support services, including a dietitian, MS nurse, peer support and physiotherapy.

“MS can be a big mental strain, I think people underestimate the mental load you take on, including having so many appointments and so much health admin to keep up with. Speaking to a psychologist and others with MS has helped with that.’

“I’ve learned the value of taking care of myself, which is the reason I talk to my physiotherapist and dietitian, I think most of us learn this lesson eventually as we get older. I’m 29, so I’m just on that journey a little earlier than most people.

“There’s so much about MS that is uncertain, so finding things in your control — like diet and exercise — has really helped me,” Tarika says.

A positive learning curve

Tarika says she has learned a lot in the past few months, including making sure she invests her energy in the relationships and activities that mean the most to her.

“One of the many things I’ve learned since being diagnosed is adaptability, especially when your body may be experiencing new things on a given day, week or month. Human beings are so adaptable. I felt like I was able to tap into this strength that I didn’t even know I had,” Tarika says.

“It can be really overwhelming but you don’t have to do it alone. Once I called MS Plus things got so much better for me. Having a team of people that you can lean on and you know that you can call is wonderful.

“I’m more compassionate and understanding of people’s challenges now and I care less about what people think.

“No one is immune to hardship but it’s ultimately what you do with it that matters. MS also makes you braver. If anything can happen, you might as well live courageously.”