“It’s going to be ok” - What I’d tell my newly diagnosed self

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

This is the MS Boost. The stuff you need to know from the people who know it.

Jodi: Thanks for joining us today, everyone. Today I'm joined by Jess, the co-host of our MS Boost podcast series and Fatima, who is a person living with MS and has kindly agreed today to share her journey to diagnosis. I'm delighted that Fatima has been willing to share her journey. The theme of World MS Day this year is diagnosis, and we know that many people have lots of different pathways that they come to being diagnosed with MS and have various different struggles and we'd like today to just talk about what some of those struggles were and really how people can feel on that journey when they are going through getting a diagnosis of MS.

So, thanks so much for joining us, Fatima.

Fatima: No problem. It's a pleasure.

Jodi: Great. Tell us a little bit first about your journey to diagnosis and how it came about for you.

Fatima: Well, I was diagnosed May 14th of 2013. At first, I was constantly misdiagnosed.

I was experiencing symptoms for roughly around two years. I did not know what was happening to me. I kept getting sick. I was very frustrated and very sick and tired of just being sick and tired. So, it had started off, with pins and needles, I was experiencing pins and needles in my feet, my hands, my face, my tongue, my scalp, my spine. So that was very ongoing, I didn't think much of it. I just thought maybe I slept on the wrong way, or I was sitting on my foot or, I just had a bad night's sleep.

Then I'd probably say my next symptom was I felt some pains in my arms. And because I was working in a deli at the time, I again didn't think anything of it. So, I was misdiagnosed with carpal tunnel. I went to my GP, I was seeing a physiotherapist, I was getting treatment. I just thought I was experiencing carpal tunnel. So, you know, I was doing all the right things and didn't think anything much other than that.

Then as time went by, I was working, studying, I was doing all the things you normally would do and I was struggling, I did realize, you know, the pain in my arms were killing me I was so tired, the fatigue had really Then I would say my next symptom was the Lhermitte's sign. I could not bend my spine forward and if I forced myself to, my spine was vibrating. It was extremely painful, it was excruciating. I actually ended up in the emergency department. And I told them that I'm in so much pain, my back is locked, like I can't move forward. And they said that I had a pinched nerve, and they gave me some Panadol and sent me back home. So, again, like, didn't think much of it.

Jess: Because how old were you at this time, Fatima, when this is happening?

Fatima: During this time, I was about 21. I was very young, I felt invincible, I felt good, like, physically strong. Not, I wouldn't say good, but I felt physically strong. So, I didn't think that anything was seriously wrong with me at the time.

Then after that, my next symptom would have to be my foot drop. When I experienced my foot drop, again, I didn't know what it was, so I had explained it to my GP as pain in my foot, pain in my leg. So, when I went to the doctor, I had actually just recovered from a sickness, so I might have had the cold or flu at the time. And I explained to the doctor I can't step on my foot and the doctor had given me some antibiotics and sent me back home and said, you've got an infection in your leg. So again, I didn't think anything seriously. I listened to the doctor, you know, I took a few days off work, and nothing changed. So, I decided, all right, it's time to go back to the doctor and find out what's, what's happening. So, I went back to my doctor and I told my doctor, I'm like, nothing's changed. I'm still the same. I can't step on my leg. Why does it hurt so much?

And the doctor did a physical assessment on me and asked me to wriggle my toes. And that's when the panic set in because I realized I actually could not wriggle my toes. I could not move my foot up and down.

After that, my doctor had, written me a referral letter to the emergency department and requested that I go to emergency straight away and, get further investigated because we didn't know what was happening and that there was something seriously wrong.

Jess: And what made you Fatima, like, keep going back because you've having these things going on, you were getting treatment from a few different health professionals, what was it that made you think, no, I really need to keep going back?

And did that make you feel, you know, a certain way that you weren't going to be believed or how did you feel about that?

Fatima: I mean, look, I kept getting sick that year. So, I felt sick constantly and I did feel like maybe they think that I'm being a hypochondriac and I, felt that way. But again, there was a part of me that was like, there's something wrong with me, I need to get checked. I just want to go back to work. I just want to go back to doing the normal things that I do. So, I didn't want to be off work for like two, three days. So that was my mentality at the time.

Jodi: And we know from other people's stories that we've heard there's this sense of not being heard about symptoms. But it's interesting that you said that you were worried that you were seen as a hypochondriac. Was that a theme for you or was just more a fleeting concern?

Fatima: I think it was more of a fleeting concern because I've always kind of been in like management roles and working within management. It's this thing where even when you are sick back then, you used to go to work. Now that we've experienced COVID, it's a very different mentality. Now it's we work from home if you're feeling sick or we take a couple of days rest and make sure we're well enough before we go back to work.

It was a very different mentality back over ten years ago.

Jodi: Mmm, so true about that sort of sense of now we do tend to listen to our bodies a little bit more when we're not well as opposed to just pushing on all the time.

Fatima: Yeah, absolutely.

Jodi: So, tell us a bit what happened, we were at the part of your story when you were in the emergency department.

Fatima: Right, so when I was in the emergency department with my foot drop, I was admitted for about five days I was picked and poked and I had completed all of these tests, and I actually passed the nerve conductivity test. So again, like I was happy to see that, you know, I was passing everything.

Then I started some rehab at the hospital. They were teaching me how to walk again. They were teaching me how to step on my tippy toes and go up and down. They were making me do calf raises. So, I was able to get that function back in my foot. So, I felt relieved knowing that I was getting better, and I was able to get that movement back. So, it was a huge relief for me.

Jess: At what stage did they say, you know, we're testing for MS? Or were they just doing a lot of different tests because they didn't know what it was? Like, when was MS ever raised?

Fatima: I'd probably say the last day in hospital. They told me that they wanted to do one last test.

They wanted to do an MRI And at that stage, I guess they were like we're just going to look for one more thing. And it wasn't until after the MRI, during that period, that I started looking into it further and questioning myself, do I have MS? Like, is that why I experienced a foot drop? So, I didn't know until that point it was a foot drop that really stood out for me.

There was no other serious signs of MS for me.

Jodi: That's a bit of a bombshell to drop on you on your last day.

Fatima: Yeah, because it wasn't obvious that I had experienced Lhermitte's sign until after I got diagnosed. So, when I was experiencing Lhermitte's sign, I was misdiagnosed, I was sent home. It wasn't until after I got diagnosed with MS that my neurologist told me that was Lhermitte's sign. That's what happens when you experience the Lhermitte's sign yeah.

Jodi: So, they hadn't put two and two together.

Fatima: Yeah.

Jodi: Yeah, had you put your symptoms into the internet to have a bit of a Google search on what was going on? We know that lots of people do that and sort of put into the, I've got all of this going on, what is it? Had you done that?

Fatima: No actually, because I was so young again, I didn't know what MS was at the beginning. And it wasn't until the foot drop that really stood out that I realized that, okay, this could be something more serious. That there could be something underlying. What is it? And then I started investigating. So, for me, yeah didn't think of MS. Had no idea. I was just a very young 21 year old.

Jodi: Yeah, you were.

Jess: So, you've had the MRI in hospital. How long was it until you actually got your diagnosis confirmed? And like we speak to so many people who, it doesn't matter how long has passed, they always remember the day almost exactly where they were, you know, what was going on when they were diagnosed. Do you remember that conversation and who was it that told you and said, you know, you do have MS?

Fatima: Yeah, well, it was my neurologist that told me I had MS. I was diagnosed at the Royal Melbourne Hospital. I was shocked. I was relieved and I also felt depressed. I felt like it was the end of the world for me because, I was like, can I, can I walk? Am I going to end up in a wheelchair? That was my first question.

So, when my neurologist said to me, look, there's a 20 percent chance that you may not walk in the future. My anxiety was very high. I didn't know what was going to happen. It was a very uncertain time for me. It wasn't until probably a couple of years later that I started really accepting my diagnosis. Because I was living in a lot of anxiety, not knowing what was going to happen to me.

Jodi: That's huge, like in terms of that length of time. I've often thought in my experience as a nurse that, the part of processing the diagnosis actually takes a couple of years and just hearing you say that really resonates to say it's not just a point in time, it's actually a process of adapting and learning. What things helped you, do you think, turn that around from a position of anxiety and sort of a sense of despair to hopefully some hope.

Fatima: I think, you know, you have a range of emotions to begin with. But really what stood out for me was, you know, the support that I received from my family. I decided I wanted to change my job. I decided I needed to make some changes for myself. I decided I wanted to spend more time with self-care, you know, looking after myself. I had to literally rewire my brain and how I thought my, my thought processes. I started to see a psychologist, you know, just having that positive mindset and realising that everything was going to be okay. So, you know, I had to really filter out what wasn't important and if something was stressful and negative, I just didn't want to be around it.

So, my mentality was if it's not going to matter in the next five years, I'm not going to spend more than five minutes worrying about it because there's bigger things in life.

Jodi: Well, that's a lot of work you say it so quickly, but I, think that's probably a lot of work to help you be able to actually do that.

You talked about your family and friends. Tell us a little bit about what they meant to you at that time of diagnosis.

Fatima: Yeah. It was, it was rough. I mean, yeah, really, really rough because nobody really understood. You know, as much they say they do, they don't really understand, and it's just a very anxiety ridden time. And I think what's important is that somebody's just there to listen to you, just hear your concerns. Just someone to talk to and, you know just attending hospitals to get the hospital appointments. Just knowing that somebody's there for you really meant the world to me. Or if someone even researched what MS was, it really meant the world to me. Just knowing the symptoms that I was experiencing. So, you know, it would make me feel really emotional, yeah.

Jess: Because that's what I was, curious to know is when you got that news from your neurologist, were you by yourself or did you have someone with you? Like, did you do suspect even going into that, that you were going to receive some news?

Fatima: I did. I actually went with my husband at the time, but I didn't expect that news at all. No, I did not expect I would have a life changing diagnosis you know, I actually thought it would just turn out clear, to be honest. I thought it would be a positive result. I didn't realize it was positive for MS.

Jodi: You must be a naturally optimistic person. I think probably maybe at 21 we're all pretty optimistic about things, aren't we, really, in terms of our health?

Fatima: Yeah. I mean, generally, I'm a very optimistic and positive person, so I'm always trying to practice gratitude and affirmations. Not only do I, you know, exercise, and take medication, but I also work on my mental health. You know, doing those things, I think it's really important to work on your mindset. You have to have the three together, you and your faith and prayer. I think it's really important.

Jess: And like that first year of your diagnosis, I guess looking back, because it's been a while, you know, since, that time for you. Do you remember much from that, the next few months after hearing that news? Like, did it feel like a bomb had almost gone off in your life?

Fatima: Yeah, absolutely. As I was saying, I thought it was the end of the world for me. I thought I wouldn't be able to work. I thought I wouldn't be able to have children. I thought all sorts of things, you know, you get a lot of intrusive thoughts, but you know, you've got to rewire your brain and that's the main thing.

I can do it and even if I can't, I'll find a way to do it. And I will find a way to do it. I will find a way. It's all about your will, really. You can do anything. So, for me, my life is about turning my pain into power. So just trying to heal others as I heal myself.

As I had mentioned off the record previously, you know, I've opened up my own business as a NDIS provider as well, Top Grade Care. So, I help others who have disability. So, I manage the team, yeah.

Jodi: Such a great way to, to turn that experience around into something really positive and really meaningful, and obviously that's what you've done, which is just amazing.

Do you think, within those first six months there would have been anything different that would have made a difference for you? Do you think that there was any sort of things that people had done or said would have meant that it was an easier transition for you?

Fatima: I think just, yeah, as I was saying, people who researched the diagnosis really meant a lot to me. People who were there, people who just popped in to check in how I was doing. Those little things, you know, hey, how are you doing. Just having a chat and attending appointments with me just really made my world, made my day.

That was really important for me. You know, don't, say, oh, you know, my relative had MS and they died from MS. That's a no-go zone, please.

That's the last thing you want to hear.

Jodi: No negative stories.

Jess: It always seems to be the first thing out of someone's mouth though is, oh Aunt Sally had it, you know, 50 years ago and it's like, that's not going to help.

Fatima: No, no, and, you know, there's treatment available now. There are so many treatment options available now than what there was like 20, 30 years ago.

We're so lucky so I honestly feel lucky to have been diagnosed when I did. Because as I said, you know, if I was diagnosed 20, 30 years ago, I don't know how I would have ended up, but I feel like I've managed well in over the last 10 years. I feel like I've been able to, you know, exercise. I've been able to do all the things that I wanted to do. I've travelled, I've had children, I've worked, I've opened up my own business. So, I feel really grateful and blessed and happy to know that I'm managing well, yeah.

Jodi: Thats just amazing to hear that story and to hear how you've turned it around, like that's just, it's stunning.

Do you think that the healthcare team around you were hopeful enough? Do you think their attitudes and ways that they approached things were helpful or unhelpful at a certain time?

Fatima: Yes. Yes. There were certain things. I mean, my neurologist never told me how beneficial exercise would have been for me. I would say in the earlier days, it wasn't something that was really recommended or prescribed.

The first thing a neurologist would do would provide you with medication. And unfortunately, you know, you don't get counselling, you don't get physiotherapy, you don't get a personal training or anything like that. These are all additional services that you have to pay out of pocket for. And these were things that I had to navigate and discover later on over the years. I've had to find these services to help support me on my journey of MS and living well over the years. And it's taken time to get the right health care team.

I feel like, right now in my life with where I'm at I have the most amazing health care team. I've got people that support me I've got you know, my family my friends. I've got my health care team. I've got a physiotherapist. I have an exercise physiotherapist; I have a PT. I have my psychologist and I feel like I'm doing well because I have these supports in place to support me.

Jodi: I absolutely love that you said that it took you years to get that team. You know, often we say, here's the list everybody, go and find that. But just, I love the fact that you said it took me a while to find the people that were right for you. And that you spread your health care team out to your family and friends, your personal trainer, you know, like they're all part of Team You. And I love that you said that it does take time to get that team around you. I think it's really important to also say, very clearly you said it would have been better to have that said at the start, but you're right.

Fatima: Yeah.

Jodi: You didn't really talk about it. I think not nearly as much as what we are now.

Fatima: We're so lucky we have NDIS now because now NDIS support people who have disabilities. NDIS was not around over 10 years ago, it's still fairly new. And yeah, it's made a huge impact on my life. I know that. So yeah, I just feel like we're so grateful to have that here in Australia.

Jess: And so, what do you sort of think, you know, if you could go back 10 years and tell your newly diagnosed self-something now as a person who's been living really well, like what's your bit of advice that you'd give to either yourself or someone else who's newly diagnosed?

Fatima: It's going to be okay, firstly.

It will be okay. You are going to survive this and it's totally fine. You can live with well with MS. I think that would be my main My main message is you can live well with MS, but you need to put in the work You need to do these things in order to look after yourself. If you're not looking after yourself, you're not going to feel well, you're not going to be well.

Put in the work to feel well. Yeah,

Jess: I love that. That's great.

Jodi: Me too. Absolutely love it. thank you so much for sharing your story. I know it's hard to stories of diagnosis. They are often a quite traumatic event and there's a very big reason why people remember where they are the exact time, the exact conversation, because it's such a significant trauma. So, we know that asking you to share your story and every time people share stories, it's just a little reliving of that trauma. And so, we're really, we're really honoured that you chose to share your story with us and all our listeners and what you've done, the inspiration for what you've done in your life.

So, thanks so much.

Fatima: No, thank you for giving me a voice. As I was saying, like, in the earlier days, back over 10 years ago, I hid my diagnosis. I hid it for over five years. I didn't tell lots of friends at the time. So, for me, I was really worried about my career. I was really worried about my future.

So being able to talk about it now, accept my diagnosis has taken me a long time. So, I'm so grateful that now I can have a place to be able to talk about my experience and hopefully help somebody else that's also feeling the same as well. Find your voice. Don't be afraid or ashamed of who you are because there's nothing to be ashamed of. You can live well with MS. it's not the end of the world. You're going to be okay.

Jess: Thank you so much Fatima.

Jodi: Oh, thank you so much. It was absolutely fantastic. And you are so inspiring. So, thanks.

Thanks for listening to the MS Boost. Let us know, what's one bit of advice that you would give your newly diagnosed self-looking back now? Listen out for a new episode next fortnight.