Being diagnosed with MS as a teen

Kim: Welcome to the Learn From Me podcast series. Today we're looking at being a teenager and diagnosed with multiple sclerosis. I have the pleasure to interview Shannon, who is a person that was diagnosed as a teenager with MS. Shannon has been a fantastic peer support volunteer, supporting other young people with MS.

Being a teen can be such a tricky time. Lots of things going on at school, at home, with peers, wanting to be as independent as possible. Shannon was diagnosed at the age of 16. Today she's going to share with us what it was like to be a teenager.

Welcome Shannon.

Shannon: Hi Kim. Thanks for having me on the podcast today.

Kim: Absolute pleasure. It's fantastic for teens that are listening to be able to listen to someone like yourself, Shannon by all accounts, who is living very well with MS, but has a few tips and tricks up your sleeve to share with other teens. It's so valuable to have you on today for the podcast. Thank you so much.

So, for the teens that are listening, I wonder Shannon, if you might take us back in time to when you were first diagnosed at the age of 16, what was happening for you at the time of diagnosis.

Shannon: Thanks Kim. So, as you mentioned I was 16, so I was actually in year 10 at the time at school.

Kim: A busy time, I can only imagine.

Year 10 with your peers, homework, getting to the business end of high school, juggling studies. Was it a busy time for you when you were diagnosed?

Shannon: It was, it was right near the end of year 10, so the year was sort of finishing up and I was getting ready to head into VCE over the next couple of years, so it was a bit of a stressful period.

Kim: I can only imagine. So, for those listening, would you mind describing how MS impacted you? Perhaps what your first symptoms were? And what was going on at the time?

Shannon: Yeah, so my first symptom was actually optic neuritis, which is like an inflammation of the optic nerve, which caused some vision problems mostly blurred vision and a bit of loss of vision.

That was my first one. And then a few months later, I got a pins and needles feeling in my feet that spread all the way up my legs to my waist over the course of a week, and then I started to become unbalanced and unsteady in my walking. And that led me to go the Royal Children's Emergency Department.

And when I was there, they connected those two events, the optic neuritis and the pins and needles in my legs and they started testing me for multiple sclerosis straight away. I was put into an MRI and the next day they told me that there were a lot of lesions that showed up on my scans and that led to me being diagnosed with MS.

Kim: I can imagine that would have been a scary time for you, Shannon.

Shannon: It was. And it was a big shock because I know that some people have a very prolonged experience before they get diagnosed. But for me, it was all sort of within one week from being pretty much normal one day. And then a week later, I was in hospital with the diagnosis.

So I would say it came as a really big shock and it was pretty stressful.

Kim: At that time, what was helpful? What helped you during such a stressful period?

Shannon: I was very lucky to have the support of my family. They were with me the entire time. I also spent a few days at home after being diagnosed just to recover and have a bit of time off school just so I could process it all.

And I had some friends come over to my house and visit me during that time. So that really helped just having a support of people around me.

Kim: That sounds great. Family and friends support, particularly as a teenager. I think our peers are so important.

Shannon: Absolutely. Yeah, that was very helpful.

Kim: So I also understand there's a really good team at the Royal Children's Hospital with an MS nurse. I think they also have physiotherapists and occupational therapists and a neurologist. So a team of professionals working with you at the time. What was that like for you?

Shannon: Yes, the team at the Royal Children's were amazing. They were a fantastic help right throughout my experience there. So, I had a neurologist that was with me for actually probably six years.

I ended up staying at the Royal Children's till I was about 23 because of the medical trials that I was on. So, I had the same team the whole way through and they were always very contactable when I had something that I needed to discuss or I was a bit concerned about. I could get in touch with them. I was able to help make decisions and be informed of the process.

Kim: That's great. That's so important. I'd imagine when your health is unstable at the time having those supports around you and informing you of what's happening is so important.

Shannon: Yes, it was. Definitely.

Kim: So, what happened after that, Shannon? So, you received your results. You were then provided with some treatment.

What happened next?

Shannon: Yes. So, I started on some treatment. I went back to school within a few days. Everyone sort of found out what had happened to me, and I was pretty open with telling people about my diagnosis that was just a personal decision. I was happy to talk about it. So people were aware of what had happened.

And then I was coming up to some final exams at the end of year 10. And also, as I said, I was heading into VCE. So, I spoke to my school about putting in some extra learning supports for me to help me get through the exams and those supports involved things like having a bit of extra time to complete my exams.

Yeah, so that was a very helpful thing.

Kim: That's a really key point. I think you mentioned there because I know from some of the teens, I've spoken to it's I guess sometimes you want to keep it to yourself, but it sounds like by telling others, family, friends, school teachers, universities, what's going on for you, they can then help you and support you as you need.

Shannon: Yeah, absolutely. It was a bit tricky sometimes because I didn't know how people would react to the news, but I was very lucky that everyone was extremely supportive and understanding of what I was going through. I also found that a lot of people didn't actually know what MS was, so by talking to them about it, I was able to help them understand sort of things that I might be going through day to day and then that helped them to support me better as well.

Kim: That's great. So important I think because they often say that the symptoms of MS can be quite invisible, so if we can't see them, it's hard to then offer help.

Shannon: Yeah, absolutely and some of those invisible symptoms that I would experience day to day and still do, be it fatigue migraines or difficulty concentrating sometimes or remembering things.

So, all those things can really add up and have an impact, but making people around you aware of what's going on is very helpful. It's been helpful thing for me to do.

Kim: Good on you, Shannon. And I guess getting extra time at school, maybe you needed more time with assignments or exams. If you're having trouble with those symptoms with fatigue, having that extra time.

I know for some people heat sensitivity is a big one. So, making sure they have an exam room that's well air conditioned.

Shannon: Yeah, exactly. The extra time was very helpful especially when I had vision problems and things like that, sometimes I needed a bit of an extension or just a bit more time.

They also offered things such as scribes if I was having difficulty writing. And yeah, as you said, sensitivity to heat is a big one as well. So, they made sure I was in an air-conditioned room or if it was possible, they would let me do my exam in a separate room to the rest of the cohort so I could be in a more quiet space and that would help with my ability to concentrate.

Kim: That's great to have that understanding but I can imagine if you don't tell people then you're just in with everyone else potentially in a hot room, noisy room, just putting up with it.

Shannon: Yeah. Suffering in silence a bit if no one's aware of what you're going through.

Kim: Well, that's a really good message there. So, how's your MS behaving now? Shannon, how are you doing?

Shannon: Very well. As I started my treatment when I was first diagnosed, I really stabilized and I didn't have another relapse until this year. So, that was nearly 7 years later and the relapse I recently had was attributed to changing medications.

So, as I came off one, I had a bit of a rebound and a relapse, but now that my new ones kicked in, I've stabilized out again, which is really good. Day to day, as I mentioned, I can still get some migraines and fatigue and sensitivity to heat. But with whatever activity I'm doing, whether that's study or exercise or work, I just make sure I have some controls in place that can help me to manage those symptoms.

Kim: Oh, fantastic. So, traveling really well, but you have had a recent relapse, but you're back to feeling well again.

Shannon: Yeah, exactly.

Kim: And that probably leads in nicely. I get lots of questions of how can I live well with MS? That MS can present some challenges at times, but how do I live happy and well with MS? I know in talking to you, we've mentioned it being a bit of a four pronged approach in the we're going to cover off, I guess, physically, what helps you, emotionally, what helps you.

We've already touched a little bit on the studies and then support such as family. So, we might start off physically. What are the things physically that help you, Shannon?

Shannon: Yeah. So physically I found that keeping up with my exercise has been extremely helpful. It helps to boost my energy levels and just makes me feel happier to be honest, to be out there being fit and active and moving.

In school I did a lot of running. I was on the cross country and athletics team. I don't run so much anymore but I've enjoyed going to the gym and doing more weights based exercise routines that helps to keep my strength up and keep me feeling fit and healthy.

Kim: Oh, right. And we do have to adapt in any way.

Is there anything when you're exercising, you mentioned being heat sensitive, is there anything you do that helps you in managing the heat when you're exercising?

Shannon: Yeah, so I tend in winter, it's not so much of a problem but in summer especially it can be more challenging. So, I tend to exercise in early in the morning or late at night when the weather's a bit cooler. Where it's possible if I can exercise in a room with air conditioning, that's very helpful, but that's not always possible. So, it's more just choosing an appropriate time of day and you know, not pushing it. So, if I can feel that I'm getting very exhausted and depleted, I'm not going to push it and overdo it. I still challenge myself but I you know I know not to push it when I'm getting extremely hot.

Kim: I noticed one thing that people often say, they're frightened that they're going to over exercise and make more problems, like make their MS worse. But it sounds like that's not the case, that you're challenging yourself but you're also pacing yourself. So, you're not making yourself feel unwell but you're certainly still challenging yourself physically.

Shannon: Yeah, exactly. And I've always been told that you know, it is possible when you exercise and you do get a bit heated, you might experience some symptoms. Whether that's a tingling sensation or another symptom you experience, but these are usually only temporary and can be related to your body.

Overheating and they'll subside as you start to cool down. But yeah, I think it's still important to challenge yourself so you can actually make improvements and get stronger and get fitter. Because those things, they really helped me to manage my symptoms and feel well overall.

Kim: That's great, Shannon. So those benefits of exercise are so important. It sounds like physically but also mentally.

Shannon: Yeah, I think so. It's a good mental release as well. Just go to the gym and clear your mind a little bit and you know, know you're contributing towards your own health, which is always a really positive thing.

Kim: And I heard that you're doing something amazing with your dad.

Shannon: Yes. In September, my dad and I will be traveling to Nepal and doing the Everest Base Camp Trek which I'm really excited about. It's going to be a big physical challenge and I think a mental challenge, but that's always been a goal of mine.

And so, I've been training hard, doing some hikes every weekend to prepare for it. But looking forward to that trip.

Kim: That's amazing. That's so fantastic. That's a big one for your life goals, I imagine.

Shannon: Yes, it is. And I've actually used it as an opportunity to do some fundraising for MS.

So, I started a campaign with the Kiss Goodbye to MS fundraising team. So, I've been raising some money and also awareness for MS along the way, which has been really nice to do.

Kim: That's awesome. Thanks so much, Shannon. You're an amazing role model for MS and young people in particular.

So, physically it sounds like you're doing really well. Another very important part I think, is emotionally. I can only imagine being a teenager and being diagnosed with MS. What's helped you emotionally in adjusting?

Shannon: Yeah emotionally, it sort of goes in waves like obviously at the start when I was first diagnosed, there was a lot of emotions. There was shock and frustration and sadness and fear of the unknown. There was a whole bunch of things going on. But having a really close support network around me really helped me sort of work through those emotions and be able to talk to people about them and find ways to overcome them. But I always would try to remember along the way that, you know, I'm still the same person I was before the diagnosis.

So, you know there's no reason I have to change my plans about what I wanted to do in my future or the things that I enjoyed doing. And then as I experienced a relapse pretty recently, all those emotions sort of come back again when you're having a relapse. The frustration and the fear and things, but it's just sort of working through it bit by bit and keeping open communication with your support network to help lighten the load on yourself.

Kim: I think that's a key message there, not being on your own, but reaching out for support. And I like the idea of tackling things one at a time. So as the problems come up, it might be something that you're struggling with to get the help then and there, step by step.

Shannon: Yeah, exactly. Sometimes that just means you need to approach a task in a different way to how you would normally do it, or it might take you longer to achieve something that you'd normally be able to achieve quite easily. I've always had the approach that, you know, I can still do it I just might have to do it differently. So yeah, that's how I try to tackle it when things get a bit tough.

Kim: That's great. And I noticed too that you're facilitating our MS peer support group for people under 30. So, the young ones which is fantastic. How's that going, Shannon?

Shannon: Yeah, that's been great. We have a great group of under 30s who catch up on microsoft teams once a month. And we all talk about the little wins that we've had over the month or some of the struggles and everyone supports each other and shares their own experiences with MS. Offering each other support and advice and help.

It's a really supportive and friendly group and it's been great to hear everyone else's stories and just see a bunch of young people who are able to get together and all support each other. So, it's really great.

Kim: Fantastic and reassuring, I think, too. I often speak to people teens in particular that are newly diagnosed and, as you've said, don't know what MS is and now feel quite alone.

So to have that peer support is so valuable, I think.

Shannon: Yeah, absolutely. As we have new people join the group, especially those who are newly diagnosed a lot of them find it very reassuring to speak to others who have experienced similar things to them. And yeah, across the group of people that we have, we've pretty much experienced everything there is to have with MS.

So, there's always someone who can relate to you and validate your experiences.

Kim: Absolutely. That's such a valuable program. Thanks so much, Shannon, for your support with that. So, we have covered off physical, emotional, family, peer support. Another area which we've already touched on but if you've got any closing tips around studies. Is there anything else, you've mentioned having extra time and rest breaks, having a really good room with ventilation?

Anything else? Is there anyone in particular that you spoke to at uni to get that support?

Shannon: When I was at school, I would speak to the careers counsellor or the head of cohort who would help put those adjustments in place. As I entered university, they had their own, learning access support team and I just got in touch with them as I enrolled and they set up a phone conversation and we just had a chat about MS.

My condition and the things that I normally struggle with and then they helped me to come up with ways that they could support me. Which was pretty similar to what I had in school, extra rest breaks, separate room, they would also let me sort of choose the time of day for my exam. So, I would tend to be pretty fatigued in the afternoon, so they would let me have morning exams. They also put in a requirement that I would have at least one day rest between exams, so I never had more than one on the same day, and I never had exams back-to-back, so I had more time to rest and recover in between.

So yeah, all of those supports are very valuable.

Kim: That's great. So, in closing, Shannon. Are there any key messages you'd like to send out to the teens listening?

Shannon: Yes, so I think my biggest one is you know, MS diagnosis can be challenging but it's definitely not the end of the world. I like to see it as an opportunity to overcome more challenges and become a more resilient person.

Sometimes the journey can get pretty tricky along the way, but having a good support network around you, you can openly communicate with is really helpful and, you know, keep pursuing the things that you love doing. And I think that's been the biggest motivator for me.

Kim: Having those challenges. It sounds like you having a purpose, Shannon, is so important.

Shannon: Yeah, exactly. Having a purpose, you know, pursuing your dreams and setting goals and challenges for yourself to overcome. It keeps you sort of moving forward and living a really fulfilling life.

Kim: And I guess asking for help as you need it, even if it's something small, not being shy to say when you need support.

Shannon: Yes. Never being shy. Never being, you know, ashamed when you're struggling to do something. Yeah, being able to rely on your support network and reach out when you need the help is extremely important.

Kim: Great. Thanks so much, Shannon, for the wonderful work that you do as a MS peer support volunteer, as someone that's constantly fundraising and in all the different MS events.

Good luck with your big trek with your dad.

Shannon: Thank you. No, thank you for having me. It's been great to share my experiences with everyone today.

Kim: Right. Thanks, Shannon.

And for those listening, if you'd like to talk to someone like Shannon, if you're a teen or a young person and you'd like to get some tips and tricks around living well with MS, please don't hesitate to reach out to MS Plus and call us on 1 042 138 and you can then be linked in with Shannon or perhaps join in with her under 30s MS support group.

Don't be a stranger, as Shannon mentioned, linking in for support, getting help is so important. Thank you again and all the best, Shannon.