6. Multiple Sclerosis: Give yourself the chance to be great

Sitting down and speaking with Terri - Louise Brown from Talks with MS is always a joy.

Whilst she throws out a glow of orange positivity everywhere she goes, those who know her best know there is pain behind every step she takes. In her smiles there is joy, but pain too.

Because Terri-Louise can walk, people often assume she is not disabled. Some people with MS use a walking aid or a wheel chair. This does not mean she is any less disabled.

Her charity Talks with MS helps people with MS share stories and help each other. Using each others lived experience they are supporting each other daily.

If you want to follow Talks with MS you can do so here:  Talks With MS (@talkswithms) • Instagram photos and videos

Or if you wish to follow Terri herself, you can do so here Terri-Lou (@ms_t3rri) • Instagram photos and videos

To find out more about all4inclusion head over to www.all4inclusion.org

Transcript

Terri Louise Brown: 0:00

Hi, I'm Terri Louise Brown.

0:01

And this is overcoming adversity, real stories, real people, real life. I'm your host, Scott Whitley, and every two weeks, I'll be bringing you an interview with someone who's faced adversity. Overcome battle diversity now, please, please, please subscribe to our podcast, give us a rating, share it with your friends. It will help us be more visible and help more people. So let's get back to the interview.

Terri Louise Brown: 0:38

I'm a mum to a teenage boy. I have a registered charity based on my multiple sclerosis diagnosis.

Scott Whitney: 0:45

Terri- Louise, thank you very much for coming on. I guess the first point you, you mentioned in, in your bullet points there that you've got a, a charity, around, multiple sclerosis and that's what we're going to talk about today. So, do you mind kind of sharing to start with a little bit about.

Terri Louise Brown: 1:03

Yeah, so I got diagnosed with relapsing remitting multiple sclerosis in March of 2016. I had my first symptom in March of 2015 and I had pins and needles in the soles of both feet. to say after that was a bit of a journey, we went on at nearly a year of a few misdiagnosis, a lot of testing, a lot of trial and error with, muscle relaxing medication. And finally, I had an MRI in November of 2015. I say finally, like, if it good came out of it. Instead, I wasn't told of their findings. and their findings was. confirmed by obviously additional specialists back in the December of 2015. It actually took me catching the flu, still being a jobsworth, so still going to work thinking all I need is a bit of vitamin C and I'll be fine, but instead my body was shutting down. and then March, March the 4th, 2016, I was literally dragged to A& E because I didn't want to go. I knew there was something wrong. I just. Don't feel like I wanted to face it just yet. So, literally dragged, kicking and screaming to North Middlesex Hospital. It took them nearly four hours to retrieve my file from a different hospital, which is bizarre because it's hospital to hospital. Why the delay? only for them to find out, obviously, Homerton Hospital had their findings. They were fully aware of my diagnosis. They just said, I was then diagnosed on the 8th of March 2016 and here we are.

Scott Whitney: 2:48

Wow, that's um, that's shocking that they didn't pass the diagnosis on. Have you ever had any explanation as to why?

Terri Louise Brown: 2:59

So when I went for the follow up, so basically what happened, once I had my MRI, they said if there was anything, they'd call me. I heard nothing. This was in November. January the 30th, I was supposed to have an appointment and apparently that's when they were supposed to tell me. But the person that was supposed to give me that information, they were off sick. And it's so crazy that I remember everything because it was such a traumatizing experience because I've got a lifelong disease where the cleaner could have told me, literally anybody. And they cancelled the appointment on the day. So again, I just assumed that everything was okay. The appointment, however, it came after my diagnosis. So I went there already diagnosed with a walking aid because I became paralyzed from my, um, lower body and when I asked, that's what they said. So that was supposed to tell me they were off sick. And yeah, in my eyes, I just feel like it was a bit of an experiment to see how long I could go, even though I had it, but without knowing I had it.

Scott Whitney: 4:05

Yeah, that seems like an appalling letdown. And I had an appointment recently cancelled on the day because someone was off sick. and my appointment got rescheduled within two weeks. So I can't, I can't see why they, uh, why they couldn't have done that. But how, how was the conversation from the health professional to you when they, when they, yeah, diagnosed you?

Terri Louise Brown: 4:39

So that was easier than expected. It was me and my mum. I was in the hospital bed and the specialist came over and he let me know. And I was like, okay, what next? Because I feel like, by that point, I was so tired. Tired of the misdiagnosis. Now, I've got a brother with MS. I speak about him all the time. I'm, in hindsight, his voice. I remember what he went through. So, I feel like a lot of my symptoms and a lot of the things that were happening to my body was also a reflection of what he went through. had like what happened with him. So when they were telling me the sleepy leg, I was like, nah, that doesn't sound, that doesn't sound right. Because I've still got so many more symptoms. There has to be a bit more. So I feel like once they said multiple sclerosis and obviously based on the symptoms I presented at the hospital, there was a bit of peace because I was like, finally, like, finally, I know it's not in my head. Because with diseases like multiple sclerosis, until they get to the point where it's no longer invisible, for the better part, it is invisible. And it's almost like sometimes you have to defend your disease. I have to defend the fact that even though I look okay, I'm in pain. So, I was at peace with my diagnosis, I just wanted to know what we could do to kind of get me out of the hospital, get some feeling back in my body, and kind of move forward.

Scott Whitney: 5:58

and you say you're in pain and I know, you know, we've spoken about different things before and people can see you and not realize that you're in, in pain and that pain is 24 seven, isn't it? As we're, as we're here now, what, what pain is presenting in your body at the moment?

Terri Louise Brown: 6:24

So it's done my left side. So I still have pins and needles nearly nine years later. So that is a consistent pain. I'm on muscle relaxers for that. So it kind of takes the edge for a little bit. And my left knee, that is again, a 24 hour pain. And my left side in general, being my weakest side, it is normally quite painful.

Scott Whitney: 6:47

Thank you. And do you think, um, you know, knowing your brother had MS, do you think that that helped with, I guess, the acceptance or the understanding then of what it means for you?

Terri Louise Brown: 7:03

It helped later on. I think at first, as much as I was at peace with it, I was still shocked because if you go on Google, they say it's not hereditary. So, how does me and my brother, with same mum and dad, how do we both have it? but it definitely has helped with the acceptance. And I think it's also helped with me wanting to help people because seeing my brother's journey as much as yes, I'm going through it too. it's almost like I had a, I had a firsthand before it was my, if that makes sense. So it's definitely helped when it comes to helping people along their journey. Cause I've seen it, I've seen it as an outsider and now I've seen it experiencing it personally to me.

Scott Whitney: 7:43

you said about, Being paralyzed for, uh, for the lower part of your body for a period. How did you cope with that? And then how did I guess it come back so you was able to, to walk again.

Terri Louise Brown: 8:00

I, I didn't cope at all. I was ticked off with the word for use of, ticked off with the word, for use of a better word. not being able to drive, not being able to take my son to the park, having to rely on everybody to take me wherever I needed to go. Not knowing if I needed to use the bathroom or not. it was a weird one. It was very strange, but I also believe that, if it wasn't for maybe perseverance. I don't believe I would have come back so quickly. So a lot of the damage that has been done, so for example, my left hand, I had no use of my left hand. It's just there. so even though, yes, I did gain back a lot of my feeling, I haven't gained back 100 percent of my feeling. Hence, obviously the pins and needles still being there, and the situation with money. But who knows, a lot of this could have been avoided if I was told in the December that I actually had the MS.

Scott Whitney: 8:58

what sort of took you from the stage of having MS to then going, right, I now want to help other people?

Terri Louise Brown: 9:08

I put my diagnosis on Facebook, and it was something like the ink may have dried on the paper, like, but MS, that you're not going to get the better of me kind of thing. And on the back of that, I got messages from people that were either in like my year group or my brother's year group, letting me know that they were going through, not necessarily MS, but different health issues. one of them actually died. Her name was Jessica. She had cancer. She was in my brother's class. aNd I was just like, where is the outlet for all of these people? And again, in reflection to what my brother went through, I feel like where he is now, might have been different if he had maybe a support bubble that actually understood the disease a bit better. And not just us as families saying, Oh, don't worry, but not you'll get better soon. But obviously we want to help. We want to understand, but we won't actually get it. And I know that now that I've got it. So I feel like it was trying to eradicate the isolation that I knew my brother experienced. That's what pushed me or made me want to help others.

Scott Whitney: 10:19

when you got your diagnosis, what was, what was it like work wise and was you working when you got the diagnosis?

Terri Louise Brown: 10:28

Yeah, so I was working for Islington Council and, and it was strange because my manager, I always come across people that know people with MS. So my manager was almost watching me like a hawk and certain things that I had experienced while being in the office. She kind of knew. She was very empathetic. One of her best friends had MS and had it for quite a lengthy period of time prior to my diagnosis. So I remember her telling me that there were certain things that she would see me do, whether it be like, I'm thinking I'm tripping over my foot, but she's seeing maybe the way I walk. I'm not noticing it because it's just the way I walk. And so they were very empathetic. I went back to work after the fact. They kept my door open, even though I was contacting them. And I remember she cried when I called her and told her she cried because she was like, young woman, that's the last thing you kind of want to hear, but she knew.

Scott Whitney: 11:27

And what about, mental health? How did everything impact mentally? Obviously, I guess maybe after, you was able to walk again.

Terri Louise Brown: 11:40

I feel like I still have my down days. I would never be able to say, oh, you know, it's been nearly eight years and everything's hunky dory. It's not. I feel like a lot of the time my mental health was also silenced because I was trying so hard to help other people. And when obviously maybe it did come back around, it will come in like the form of anxiety. For example, and on the back of the anxiety, I'd maybe procrastinate and not do something and I could stay in my room and it could be light outside and it will go all the way to dark and it will be like, I don't want to be around anyone. But I feel like when you're helping people and when you've got a community, people forget that you're going through it too. So there's a lot of offloads and it's just like, when do you kind of say, okay, I can't do this now without feeling bad. So I'll be the first to say a lot of the times my mental health wasn't necessarily at the forefront, not the best decision. Um, and yeah, it came back to visit me in other ways.

Scott Whitney: 12:40

So where do you then go to offload and get your, your support and your relief?

Terri Louise Brown: 12:46

So I've got, I've created, and I feel like it was one of the, one of the best things I've ever done. I've got like my own little micro community. So it consists of people like Roxy, I'm sure you know Roxy. We've got another lady called Junaid, we've got Yazzie, we've got a lady called Aaliyah, a lady called Sherelle, and another lady called Alicia. And I know, if I need to scream about anything, I can pick up the phone, scream, put the phone back down, and it's judgement free. And they all have MS. So they understand, they understand what I'm going through. And, you know, they have their platforms on social media, albeit maybe not a charity, but they see, they understand. Obviously, I've got my friends, I've got my family outside of MS, but I've also had to create a micro community just to ensure that I'm not going bananas some of the time.

Scott Whitney: 13:40

when we see, or if anyone's seen any of your branding or Anything. Yeah. Bright orange.

Terri Louise Brown: 13:49

Yes.

Scott Whitney: 13:51

So what, what's the, what's the story behind the orange branding?

Terri Louise Brown: 13:57

So, like most diseases, it's, it's the, MS color. So like, lupus is purple, like a loving kind of color. We've got pink for breast cancer. Orange is the MS color. It just so happens that I've done overkill and everything. You see sometimes including my clothing. He's orange. I'm a walking satsuma

Scott Whitney: 14:17

so, yeah. And then you've got a few, uh, nice little catchphrases or things like that. Can you share some of those and explain what they mean?

Terri Louise Brown: 14:33

Yeah, so. What's

Scott Whitney: 14:34

special to you?

Terri Louise Brown: 14:36

Um, one of the ones I say all the time is give yourself the chance to be great. And that's because I feel like with any diagnosis, not, not precious to MS, um, we kind of dig ourself a little hole and try to stay in there. And that's maybe because we don't fully know how to deal with our diagnosis. We could be smiling on the outside, but internally we're falling apart. So when I say give yourself the chance to be great, be kind to you, be kind to yourself, and give yourself a moment. And be kind to yourself could mean buying the chocolate bar that you like and sitting in silence and just listening to yourself too. But be kind to yourself, um, allow yourself the chance to be great because with or without any disease. You're an amazing person. another one that I say is turn your pain into champagne. That's what I believe I did with this MS diagnosis. As much as I do not gloat, about having an incurable disease. What I do feel is that it hasn't stopped me from doing, if anything, it's pushed me to do more. So because of MS, I'm also a published author. Because of MS, I have a registered charity. Because of MS, you've seen me in newspapers, you've heard me on maybe radio. I'm able to meet people like you, and obviously share my journey a bit more to a wider audience. So turn your pain into champagne. Yes, it is a negative, but turn it around. The outcome is obviously what, you know, we strive for.

Scott Whitney: 16:06

Excellent. And when people see you kind of walking around and they see you as you're fine, you're pain free, have you got any stories where people have see you thinking that you're completely paying free and you're the opposite.

Terri Louise Brown: 16:30

Oh God. Yeah. So I went to an exhibition and I went to a disability exhibition and I was with another one of my disabled payers and because they had a walking aid, it was easy for the person at that particular store to talk to them about the product. for obviously disabled people. And in hindsight, I was almost talked over like I was there just to be the carer. And it took the other person to be like, she could use your services too, like she has a disability. And it was like, oh, oh, okay. And in my head, I was like, this is the ignorance I'm used to. And I get it because you can't see it. But, um, I feel like for the space that we was in at that time, especially with it being a Disability exhibition, sorry. It wasn't great.

Scott Whitney: 17:24

And I think, um, it's really important for people to understand what your charity is about, what you do and who you support. So, um, yeah, not at all. It's fine.

Terri Louise Brown: 17:38

Okay. So it's called, uh, Talks for a MS because we encourage healthy conversation. while the charity is open for all, we have members from all walks of life, from all ethnicities. What we do, however, try to target and amplify are the voices of the black brown community. It's not an issue, but it's to ensure that we're included. A lot of the time, whether it be research, we're not, um, and that needs to change during 2024. So we do webinars whereby we either talk about life experiences. So we have 1 coming up, but I'll be talking to a panel of 4 people and they all have MS. However, they all have MS. platforms. So we'll be talking about how we navigate having a platform, helping people like we spoke about, and also having the disease. We have in person events. We have charity, we have charity, charity football matches, and they can get quite competitive. We, we've done an overnight retreat in Milton Keynes last year, and we're planning on going, I don't want to say worldwide, but we're getting on a plane for our next retreat, which hopefully should be in October. Um, and we have support sessions. They can either be one on one, or we can have like a support bubble. At the moment, I put a message in our WhatsApp group this morning, there's about 30 people in there, and I had to stop reading it because I was like, oh my gosh, this is too much. But, um, we talk. We talk, everybody has conversations and purely because a lot of the people that do find my charity maybe haven't found or haven't met another person with MS before. Whether it be a white person, a Turkish person, a Chinese person, a black person, they come to, they come to, they come into contact with the charity because we're a safe space. And that's something that we, we implore, like we are a safe space. You come, it's judgment free. We just want to help. We want to ensure that. You know that you're not by yourself. Um, because this disease can be a bit of a difficult one. It's not a quote unquote, how can I say it? It's not a, it's not maybe one of the more talked about diseases. So sometimes you're in a bubble because people don't understand you. So talk to MS, we try our hardest to understand all, whether it be by lived experience or, um, medical professionals.

Scott Whitney: 20:10

And where do people, what's the best place for people to go to find out about webinars, et cetera, to learn?

Terri Louise Brown: 20:18

So we're on Instagram, but we've also got a Facebook support group. Uh, we've got our company page on LinkedIn, and we are building our website. We are trying our hardest to build a fully accessible website, which is obviously coming with a lot of roadblocks, but Hopefully we will get there.

Scott Whitney: 20:38

Excellent. So Instagram, the main place for people to go. Yeah, yeah. Okay, perfect. So, if someone's just been diagnosed with MS, what advice do What advice would you give to them? It may be a

Terri Louise Brown: 20:56

life sentence. That's not a death sentence. search. But don't go down a Google rabbit hole. Include lived experiences in your research. There's pages all over social media. Go to them. Jump in people's inboxes. Don't feel scared because at the end of the day, we're all going through it too. The worst they can do is ignore you, but you go to the next person. Um, but yeah, it's a life sentence, not a death sentence that keep on going.

Scott Whitney: 21:29

And what about if someone wants to support someone with, with MS?

Terri Louise Brown: 21:35

Again, we cater to our allies as well. Um, we also have, uh, we have a bite sized, uh, workbook. Which covers a lot of different things from mental health, MS in the workplace, and just MS in general, and how it affects different aspects of life, parenting,

Scott Whitney: 21:55

And what's then been your biggest sort of positive?

Terri Louise Brown: 22:00

I would say like meeting people like yourself being part of things like the Disability Expo, um, and that increased my reach that crazily. I don't know if it was the orange sand why everybody kept on coming over. Um, but yeah, just being able to get the story out there more. Like, like I said, when my brother was diagnosed 15 years ago. You didn't really hear about it. And then later on, when you did hear about it, I think Hollyoaks was one of the first places that done a storyline with Hermes. it was just about wanting to commit suicide because of their diagnosis.

Scott Whitney: 22:37

So, so not a great representation at all.

Terri Louise Brown: 22:40

Yeah. So we're trying to change that because at the end of the day, representation matters. Um, and you have to still, even when it's hard, because it's not always easy, you have to keep going or at least try to.

Scott Whitney: 22:53

And what would you like to then see more of on social media sort of representation or content wise?

Terri Louise Brown: 23:03

I want to see more collaborative pieces with maybe the bigger companies that in 2020, maybe put out a statement in regards to wanting to broaden the diversity and inclusion and haven't, but they've done it because obviously at the time, there was a lot of stuff going on in the media. So yeah, a lot of those statements, I would love to see them actually done.

Scott Whitney: 23:28

And then finally, um, what's, what's coming up next from you?

Terri Louise Brown: 23:35

So we are on tour. I created like a sub brand called Learn and Chill, whereby we put on micro events. I say micro, but we have about 40 people there. last time we. Partnered with a company called Alternative Nights, and they had like a drink station and we had mocktails and cocktails and we was drinking out of pineapples. Um, but then while we was drinking out of our pineapples, we was also having a session of learning from MS, learning about MS, sorry. And we carried out like a support group, whereby we asked attendees questions in regards to how we can build and what more do they want to see from the, from the charity. So that's what we're doing. We're moving around the UK. Next stop is hopefully Bristol, and then we're going to Liverpool. Um, and like, you know, we'll be at the Disability Expo, uh, in July.

Scott Whitney: 24:27

thank you so much for coming on. It's been, uh, it's been great speaking to you and learning more about, I guess, the experience from, from diagnosis to how Talks with MS started. So it's been amazing. So, uh, so thank you very much. so much.

Terri Louise Brown: 24:44

Thank you for having me.

24:46

Thank you for listening and I hope that this episode has managed to help you go one way or another. Whether it be helping you yourself or helping you understand what friends may be going through. Feel free to share this episode with friends, family, repost it on your social medias. And obviously if you really enjoyed it, please give us a thumbs up and rate it. It all helps. We'll be back in two weeks. We'll see you then.