"I'm a woman, I'm a Black woman, I'm a mother, and I am disabled, just letting you know. Speak out. You don't have to hide it. Don't look at me and think, oh, she looks okay. No, I am actually a disabled woman, and I'm no longer embarrassed of it."
Terri Louise Brown has Relapsing Remitting Multiple Sclerosis (MS), experiencing frequent relapses and daily pain. In this conversation, Terri shares her journey from MS diagnosis at 27 to founding the charity Talks With MS. The charity provides community support for those living with multiple sclerosis.
Cultural attitudes in BAME communities can create barriers to seeking medical help for chronic conditions, which is why Terri is committed to being the voice for the voiceless and encouraging people to seek medical and emotional support.
We discuss how her personal experiences as a Black woman navigating disability have shaped her passionate advocacy for greater accessibility, representation, and understanding of non-visible disabilities.
If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.
For support and information:
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Scroll down for the full transcript.
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TRANSCRIPT - Multiple Sclerosis with Terri Louise Brown, Talks with MS
Speaker Key:
VO Voice Over
CB Chantal Boyle
TLB Terri-Louise Brown
VO
Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.
CB
Welcome to the Sunflower Conversations. I am your host, Chantal, and I am joined by Terri-Louise Brown. Terri was diagnosed with multiple sclerosis, which we will probably refer to as MS, as an abbreviation, as we go through our chat, eight years ago and has since founded the charity, Talks With M.S., a supportive platform for those with MS to share experiences.
As an advocate for accessibility and disability technology, she also runs a consultancy company teaching companies how to achieve greater inclusivity. So, a very busy woman, so thank you so much for your time, Terri. How are you today?
TLB
Not too bad, and thank you for having me.
CB
It's our absolute pleasure. Before we begin, I'd like to give you a visual description of myself, and Terri will do the same. So, I am a female. I am in my late 40s. I have got light, brown skin.
I've got long, brown, curly hair. I am wearing clear-framed glasses, and, as ever, bright-coloured lipstick.
TLB
I am Terri. I am a darker brown female. I have got short, black hair with a side-parted fringe. I've got quite wide, black-framed glasses on and a light-pink lipstick with a stud in my nose, and I'm wearing a grey polo-neck jumper.
CB
So, MS, this is what we're talking about. So, for my benefit and for the benefit of the listeners, could you please explain what multiple sclerosis is?
TLB
Multiple sclerosis is a chronic neurological condition. It's also an autoimmune disease, which means that the body's immune system mistakenly attacks the protective covering of the nerve fibres called myelin. A few facts about MS. MS is more common in women than men, and it can affect individuals at any age. I was 27 when I got diagnosed, and it is most commonly diagnosed in young adults between the ages of 20 and 40.
MS can significantly impact an individual's quality of life. However, what many people don't know is that there are actually four different types of MS, and hopefully we'll get to talk about that a bit more as we go on.
00:02:54
CB
Yes, that would be really interesting to hear a bit more about that, for sure. Is it genetic?
TLB
So, they do say it's not genetic. However, I've also a sibling with MS. So, my younger brother, Daniel, was diagnosed 15 years ago, and same mum, same dad. We've also got paternal cousins, a brother and sister, again, same mum, same dad, who also have MS. And I've encountered a lot of people who either have a mum or a sibling, or even a dad or some member of their family with MS. I actually found a woman who, it’s her, her sister, her mum and her mum's sister. So, as much as Google says it's not genetic, I feel like we've still got a long way to go with that.
CB
So, that's quite interesting. So, you're not given any genetic type of former testing or anything like that to see whether your children would be affected by it?
TLB
No.
CB
No, nothing. They just don't look into it?
TLB
They don't look into it, and I feel like that is also one of my biggest fears, because I've got a son, and it's like, I wonder if, and I know you don't want to bring on illnesses, but it’s scary times. And as much as they say it's not, looking in the personal position that I'm in, it kind of is.
CB
Yes. It's very close to home.
00:04:17
TLB
Very.
CB
You've said there's four different types, so we can maybe start off with the type of MS that you have, and how does it affect you?
TLB
So, I now have relapsing-remitting MS, whereby I can get maybe four, I think last year I had four, relapses and the odd flare-up. Or I can go through a whole year with none. I'm waiting for that year because it hasn't come just yet, but relapsing-remitting MS is basically the, I don't want to say popular, but that's the more common one that people are diagnosed with. They may have one or two relapses that match with the symptoms of someone that has MS, and they're normally diagnosed on the back of that.
CB
Does your brother have the same type?
TLB
So, when he started, he did have relapsing-remitting. He now has, quote/unquote, primary MS. And that's partly because his condition has progressed over the years. So, he's now non-verbal. He's fed via feeding tube, and he's bedbound. However, we do put him in his wheelchair. We do make him go out in the garden and stuff like that.
CB
So, relapsing-remitting is one form of diagnosis within multiple sclerosis. You mentioned there were four. What are the other ones?
TLB
There's relapsing-remitting, there's primary MS, there’s secondary MS, and the final one, it’s like the pre-diagnosis stage.
00:05:51
It's not one that is often discussed, and for the life of me, I cannot remember the name, but I will definitely come back to you with it.
CB
Okay. So, how did it start for you? When did you begin to realise that your health was affected and your everyday operations, your body operations, were differing a bit?
TLB
So, my first ever symptom was March 2015, and I’d had an argument with my partner, and I woke up the next morning normally, and I had pins and needles in the soles of both feet. I didn't think it was strange until it had lasted for near enough half a day, and half a day turned into a month. It turned into two months, and I was like, okay, maybe I might need to seek some sort of medical attention. I wasn't necessarily scared of the GP, but I feel like, at that point, even prior to MS, I was tired of the GP not necessarily listening, so I kind of avoided it.
Anyway, I went to my GP, told her my symptoms. Prior to going to the GP, I’d already done a bit of googling. Because of my brother's condition and his diagnosis, I was already in the thick of researching multiple sclerosis. However, I just didn't realise my research would have become personal. And I’d done a bit of research, saw that the symptoms kind of matched a few symptoms of multiple sclerosis, and also something called Guillain-Barré syndrome and sleepy legs syndrome.
00:07:20
And I thought, okay, from research, I already know MS isn't genetic, so that can't be it. However, let's see what the doctor has to say. Went to the doctor. We did a few neurological examinations that she was able to do like read the face, and she referred me to get an MRI. I feel like that was the June. By the July, my right foot had corrected itself, but because my left foot still had the pins and needles, I still wanted to push forward with the MRI.
It was a Mother's Day. So, the following March, March 2016, had my MRI in the November. They didn't contact me. I thought I was fine, but the pins and needles were still very much there. I knew I was up do-do street March 2016, the day before Mother's Day. Mother's Day, the day after, my body was shutting down.
CB
Could you feel it?
TLB
Yes, and it was painful. It was awful because to touch, the only way I could describe it would be hot ants crawling up my body. And that didn’t might make any sense, but it was interesting. And by that point, so the day before Mother's Day, I had wet myself because I'd already lost the feeling of the lower half of my body. So, I wasn't aware of what was happening. I didn't know if I needed to go toilet. I didn't know if I didn't need to go toilet. Apparently, I needed to go, and I went.
And that, in itself, was very strange for me. And I think, because I had had the MRI, the November, and hadn't been told anything was wrong, as much as I knew there was something wrong, I was still quite hopeful that the NHS would have come through for me and wouldn't have led me down this garden path, as to not telling me that I was actually diagnosed with something.
00:09:18
CB
So, how long did that last for? From having that sort of feeling of the paralysis from the waist down, you must have been so scared?
TLB
I was petrified. I was literally petrified, but in that moment, because it was Mother's Day and everybody normally comes to my parents’ house because, like I said, my brother's bedbound, and it's just easier for everybody to congregate here, I was still trying to act normal. So, as much as I was in pain, normally I'd be in the kitchen with my aunties, I couldn't. I was doing minimal, but they didn't really say much. I tried to braid my cousin's hair, and that was the biggest task. And again, I couldn't do it because I'd already started to lose feelings in my fingers as well.
And it was only until the next day, my mum literally looked at me… I took a day off work, which is something I wasn't doing regularly, and my mum looked at me, laying on the sofa, and she was like, you're in pain, aren't you? And I was like, I think so. And she was like, we've got to go to the hospital. I was like, I don't want to go. And it was a task, I think, because I knew there was something wrong. It was such a task for me to actually agree to go to the hospital and pack an overnight bag. And, yes, that was the Monday. And I got diagnosed the Tuesday.
CB
So, did you go with saying, look, I've done a load of research anyway, and this is what I think it is?
TLB
No. I went there, and I said, I've left my seven-year-old at home by himself.
I need to go now. I wasn't thinking MS research. I don't even think I was thinking. I was just like, I can't be here. I know there's something wrong. I don't want to be told there's something wrong. It's one thing to do research for somebody else, but then, when it becomes, or when it could potentially become, your life, in that moment, I didn't want to hear it because I was also very aware that MS, at the moment, is incurable. At 27 years old, I didn’t want to hear it.
CB
No, you didn't want that to be your reality.
TLB
No. I’d just about found peace with my brother's diagnosis and his new normal. Yes, I wasn't ready for that for myself.
CB
Yes. So, that's quite a fast acceleration from having the pins and needles in your feet.
TLB
Yes. It was near enough a year from first symptom to diagnosis.
CB
You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes.
And then what happened, following on from that? How did your symptoms develop?
TLB
So, the paralysis lasted for four and a half months.
00:12:02
However, in that time, because I was having active relapses, they gave me a steroid that they didn't know I was allergic to, I didn't know I was allergic to, and it took the use off my left hand. So, till this very day, I won't pick up glass with my left hand. I won't pick up a plate with my left hand. Unless I'm actively looking at the object that I want to hold, I can't just assume my hand is going to know where it needs to go.
But outside of that, I'm in pain near enough 24 hours a day, but I feel like I'm used to it now. And, yes, I am back on my feet. I wrote a book called Paralysis to Heels. The heels aren't as high as the heels I used to wear before diagnosis, but I'm just maybe grateful that my mobility is back in a more balanced state, and that didn't come easy.
CB
So, presumably, you weren't able to work during all of this period?
TLB
No. For the first two months, I wasn’t working, but what had happened is, even though I was contacting, my manager at the time was the one that told me that I could, potentially, have MS. And that was because her best friend in Australia had it, and she saw similar symptoms when I was in and around the office, from my balance to even just some of the things that I was saying, in regards to how my body was feeling.
So, she actually kept the job open for me, even though I was a contractor, which was so strange, but I was so grateful for it because it was nice to be able to go back to some sort of normality after such a major change.
00:13:40
CB
And understanding as well, and compassion.
TLB
Yes, extreme understanding, empathy, compassion. And again, it was great to be able to go back into a workforce with somebody that actually understood what I was going through, even though not personal, still personal.
CB
And I imagine, like you said, you needed some semblance of normality after having such a traumatic rollercoaster of symptoms and emotions.
TLB
Yes, definitely.
CB
You said that you experience pain every day and that you have flare-ups. So, I'm assuming, during your flare-ups, your pain is at an increased level, is it?
TLB
Yes, it is. And so, the times like now, where the weather's a bit cold, I almost hibernate, or I have about three or four layers of clothing on, and that includes when I'm going to sleep, because I've also got a weather intolerance. So, cold weather, it just heightens my pain, and then the sun in the UK drains me to no end, because it's not really real. However, if I'm back home, if I'm in the West Indies, if I'm in Turkey, it's like there's nothing wrong with me. It's actually such a difference.
CB
That's really interesting, isn't it?
TLB
It is, and I love it. That's why I try my hardest to be away as much as humanly possible, because it makes such a difference to how my body feels.
00:15:11
CB
Do you hear that from other people who live with MS, about the weather conditions, or is that just something that's unique to you?
TLB
No, definitely not unique to me. Those, especially who have maybe a heat intolerance, when they are in a country where that is like normal climate, for it to be warmer than the UK, they definitely appreciate it a lot more.
CB
Yes, that's a good reason for making sure you're able to save up and get those holidays in, isn't it, for medical reasons?
TLB
Yes.
CB
So then, during the winter, your activities and the things that you would do would be restricted a bit, would they, just because of the cold and how that bothers [overtalking]?
TLB
That's a personal choice because nobody likes to be in pain. And I think, over the eight, nearly nine years I've realised we're not best friends. Me, cold weather, we don't go together very well. So, I do only what I have to. I go out only if I have to, and I don't mind it. And I think my people around me, they've gotten so used to knowing that if it's too cold, I'm not going. Yes, and that's the me choice. And sometimes you have to make choices for yourself, even if it makes you the flaky friend. I don't mind. I’ll be flaky.
00:16:42
CB
Having that understanding from your social circle and your family is crucial, I would imagine, to supporting your mental health, so that you aren't viewed as the flaky friend or the letdown.
TLB
It definitely is. And so, so grateful for the village that I have. Biological/non-biological, they've really helped me in my MS journey. I always say that MS is not just about the person diagnosed with it, that has it written on paper. Your allies play a major role in your journey, and that's MS/any disability. Your allies play a major role.
CB
That's the purpose of this podcast, is to really create a society of allies. And how can somebody know the first inkling, unless we are able to listen to conversations with you and really help to gain a better and deeper understanding of it? So, again, thank you for sharing your time to talk to us about it. You've created a charity, Talks With M.S. I said at the introduction. Can I ask why you created the charity?
TLB
So, when I got diagnosed, I put my diagnosis on Facebook, and on the back of me putting my diagnosis on Facebook, I was almost inundated with messages from people around my age, maybe a little bit younger, some a bit older, letting me know about the different health challenges that they're facing. And that, coupled with the fact that, when my brother was diagnosed, there was minimal representation, and that's from a perspective of a man, a young man, under the age of 25, and a young Black man.
And I know that level of isolation played a part in where he is now, so I just wanted to maybe help with a little bit of isolation.
00:19:02
I didn't want anyone else to go through what I witnessed my brother going through, in regards to not having a safe space, not having a community, not having someone else that actually knows what he's going through, that's maybe not a family member, that's going to just, in a sense, have an element of toxic positivity and just say, you'll be okay, when in hindsight, guys, I've just been diagnosed with an incurable disease.
I wanted to create a space of people that actually got it, a space where people could either compare symptoms or talk about potential medication that they want to go on, or holistic therapies. I wanted to create a space where people realise that there's others that look like them, whether it be age, race, gender, and others that actually want to talk about what's going on with them.
CB
So, it's a forum for connection?
TLB
Yes, it's a big brother/big sister platform, now registered charity.
CB
Yes, and your brother, he was 21 when he was diagnosed. And how long prior to that did he start to experience symptoms? I'm just really trying to visualise how young he was, because I have a 21-year-old son now, and I can visualise that and how catastrophic, I think, if it's okay to say that, it would be for a 21-year-old. But presumably, it started even younger for him?
TLB
Yes. So, he was 20. So, his first and only symptom as to why he even got diagnosed was optic neuritis.
00:20:46
And optic neuritis, it's, in layman's terms, you could partially lose your sight, and it could be in either eye, or it could be in both eyes. And the level of sight loss, nobody can predetermine it. And you also can't determine or estimate when it comes back, or if it comes back, or in what capacity your sight comes back. So, with Daniel, it seemed as though no glasses were strong enough for him. And for some strange reason, because it's not something that they were doing back then, the optician actually looked at the back of his retina, and on looking at the back of his retina, noticed some shading.
And I think the shading coincided with optic neuritis, but they sent him over to Moorfields, and obviously, further testing was done, and that's where he was diagnosed.
CB
So, Moorfields is a is a world-renowned eye hospital in London.
TLB
Yes.
CB
They can pick up a lot through the eyes, can't they?
TLB
They really can.
CB
So, and he started off with relapsing-remitting. Did he have any periods when, before he became bedbound, he was doing better than he was before?
TLB
Yes. So, in hindsight, him becoming bedbound was not necessarily because of the disease.
00:22:21
And again, me starting Talks With M.S. is so nobody went through that isolated period that he went through. Him having optic neuritis, he was still, to a point, going to university. He was still going to work. He still had his girlfriend. He was still one of the lads, going raving and so on and so forth. However, when he did get diagnosed, there was a period where they were speaking about the medication, and they weren't very helpful.
So, my dad's a pastor. My mum’s first lady, and my brother decided to focus a bit more on his faith. And I remember him going to the doctor, and the doctor literally laid out three medications and said, sign. Choose one, sign for it, which is normal. However, the delivery for a young Black man that has no real idea what this disease is, it was confusing. And in that moment, Dan basically turned around and said, you know what? I'm going to pray on it.
And I feel like the doctor, the specialist just wrote him off from there. However, it went from Daniel maybe being in bed for one day, to him, being in bed for the whole week. And I remember my mum used to be like, Dan, come on, just get up, because, remember, his mobility wasn't affected at all. So, he still had… He was still able to do that. And then, from one week to two weeks, and he became very stubborn.
CB
So, sorry, can I just clear this in my mind? So, he didn't take the medication, or he did?
00:23:54
TLB
No, he didn't.
CB
He didn't. Okay.
TLB
Yes. He has never had any MS medication to this very day. Disease-modifying drugs, he hasn't had any of them. So, yes, he just had longest bouts of being in the bed. And the thing with multiple sclerosis, it affects your muscles. And it's almost like, if you decide to stop using them over a period of time, it will say, okay, no problem. If you don't want to use them, I'll take away your ability to use them, so it's no longer a choice. And in hindsight, that's what happened.
CB
Do you mind if I ask you a personal question? Do you take medication?
TLB
I do, yes. So, I got diagnosed in the March. So, okay, backstory. When I had my MRI, I've said it before, they didn't tell me. So, the hospital that was supposed to let me know whether they found anything strange, if anything caught their attention, if there was any possibility of anything, they didn't let me know. So, I actually got diagnosed in a completely separate hospital, and that was five months later.
And the hospital that actually diagnosed me, it took them four hours to get my MRI results from the initial hospital. So, there were already so many mess-ups that I got diagnosed in the March, and when the man was at my hospital bed, he said, he's not going to refer me to a hospital. He's going to refer me directly to a specialist at the best hospital.
00:25:21
And he did, and I was fortunate enough to start my medication within two months. And normally, it takes people six months to a year after diagnosis to even have a meeting with their specialist, let alone start a medication so quickly. So, yes, I am on medication. I'm on a drug called Tysabri. I celebrated 100 rounds of medication in August. People may think it's strange that I say celebrated. Absolutely. I don't celebrate having a disease. I don't celebrate taking medicinal drugs.
What I do, however, celebrate is the process from being diagnosed to where I am today, and I know I couldn't have done that by myself. I know that drug has helped me, whether it be to give my body a rest while it repairs certain parts, or to make me feel a bit human, even if it's only for 24 hours. So, yes, I do take Tysabri. I do take a disease-modifying treatment.
CB
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Do you also use methods, which we hear a lot about, pacing and spoons? Do you try to manage your fatigue and pain levels by making sure you take rest breaks?
TLB
I think the sensible answer would be, yes, but that would be a lie. I don’t
CB
Anybody listening to this who knows you would be thinking, what's she going to say here?
TLB
Doesn’t use spoons. She doesn't sleep. I messaged her at five o’clock, and she replied. And they'll be absolutely right. I am a bit of a workhorse.
00:27:01
And I feel like, because I know the impact I'm trying to create, sometimes I don't pause when I'm supposed to pause. However, because I do know what it now feels like to involuntarily be paused when I'm at that that point, I take a minute. Hence, over the Christmas period, I had to take a couple of days.
CB
Yes. You'll bring yourself back down from the… Or whatever the word is?
TLB
Yes, when I'm at that peak, kind of, all right, Tel, reign it back in. But for me, no, I don't. And that's because some days, I might not do anything, and then some days, I may be a complete workhorse.
CB
Yes. Okay, right. Well, we've spoken about why you created the charity, and you spoke about your brother being a young Black man and not having anybody to identify with, to travel down the journey with and how isolating that was. May I ask you, in your experience, do you think attitudes towards disability differ in BAME communities? And why do you think that is?
TLB
100%. I think, culturally, disabilities, illnesses, it's not always accepted. And I also feel like, culturally, because of maybe the different barriers that we faced as a BAME community, we're not always in a rush to go to seek help from medical professionals. Do I think that's right? Absolutely not. But I have been there, and I feel like that's why I always say, I advocate for myself, advocate for the voiceless, who is my brother, as he's non-verbal.
00:28:44
And I advocate for those who are tired, tired of not being heard. Tired of almost being drowned out and making them seem as though what they're saying is nonsense, when in hindsight, we're the ones going through it. So, culturally, 100%, I do feel like there are some disparities that need to be addressed and that need to be changed.
CB
And that's from within the community. And then externally, there is a conscious or unconscious bias that Black women are stronger and can take more pain, and I think that would also apply to men, that we're stronger, so you don't get the same level of maybe empathy.
TLB
Empathy/care, and I feel like that could come from the fact that we've just gotten on with things. So, because that's what they see, then it's like, oh, well, it's all right. We don't have to do too much because they're just going to get on. They're just going to deal. I say it to my friends all the time, even though it's a joke, I'm not strong. I'm not. I did not want to be on the list of God's strongest soldiers for 2025 and beyond, because I'm tired. I'm actually tired. I might smile about it, but I'm so tired.
CB
Yes, the pain is real. And do you see anything changing, maybe from our generation, although I think you're younger than I am, and younger? Do you see those attitudes from within the community changing at all and being a bit more open to sharing illnesses and symptoms, etc., to hopefully lead to faster diagnosis and support?
00:30:39
TLB
I feel like if it does, it's because it's taught, if that makes sense. So, for me, if there's anything wrong with my son, you tell me. I need to know. Just so, if you need to go to the doctors, then we go to the doctors. I'm letting him know that it's okay to go to the doctors, like you actually might need their help. And if you still don't feel that you're getting the help that you need or deserve, you need to speak up because ultimately, it's important.
I think, even with the foods, it's causing so many different illnesses, and we actually need to speak up. It's no longer just like, oh, I'll get on with it, or, oh, this person had similar symptoms to me, so I must have that as well, and then you self-diagnose. No, we actually need to be teaching our younger generation because ultimately, I know me. I haven't necessarily seen it from my parents, where they're actively going to the doctors.
So, I know I had to teach myself that. So, hence, why I now have to teach my son. So, I feel like, if the change is going to come, it's going to have to be taught.
CB
Yes, that is the only way, isn't it, really? We do follow in the footsteps of our family, our older generation and follow what they've done. So, yes, that's good. And then, as a Black woman with a disability, what are some of the everyday barriers that you encounter, or have encountered?
TLB
I've been told that I'm not disabled enough to class myself as disabled.
00:32:14
CB
Gosh, Jesus.
TLB
I said, oh, that's interesting. And I put a post on Instagram, and it was strange to me, because it was from somebody that also has MS. But I think, because of where I am on my journey, I was able to look at it from a perspective of, this person has most probably been diagnosed for a shorter period than I have. And her MS has maybe progressed a bit more, even though she doesn't know where I started, and she's coming to me from a place of hurt. So, I [overtalking] it, and I said, no problem, because, at the end of the day, how do you measure disability?
CB
I think it's such a good point, because I do see that sometimes, where people can be comparing symptoms. Oh, you're not as bad as me, so you don’t, or shouldn't, really have a voice in this arena. And that's really reductive, and it's not going to help anybody anywhere.
TLB
No, it's not going to help anybody. It's not going to help you. By you telling me that, it's not going to change your situation. I don't know if it's going to give you a kick, because you were a bit not nice to somebody. But ultimately, me letting people know, listen, I'm a woman, I'm a Black woman, I'm a mother, and I am disabled, just letting you know. Speak out. You don't have to hide it. Don't look at me and think, oh, she looks okay. No, I am actually a disabled woman, and I'm no longer embarrassed of it.
00:33:50
But in terms of another daily thing, I've been accosted because I used a Blue Badge bay before, even though the Blue Badge has my face on it, because as much as, yes, I am walking, I have pain 24 hours a day. I'm on medication for the pain in my left leg, because as much as, yes, it may work to a point, I do still have pins and needles nearly nine years on.
CB
Yes, I don't have that. I don't need this park right in front of the store or whatever. I don't have that, and that's how it should be. You can't see what's going on inside your leg, your foot.
TLB
No, you can’t. And it was somebody that actually was in a Blue Badge bay. And in my head, I was thinking, you've already got a bay, so what's the problem with me parking in one? It made absolutely no sense, and I'm the kind of person, if I saw that there wasn't enough bays, and this person, because they were an older couple, I would have parked somewhere else. I'm happy to just drag my leg.
I am so used to this pain, and it's so strange, but I've become so used to this pain, if I have to park somewhere else, I have to park somewhere else. However, if there's a bay there, and I'm able to put the Blue Badge that has my face on it, then I will use it.
CB
Yes. Speaking to another mum, a Black woman, she's got young children, she has lupus and lots of other serious health conditions, including a very serious issue with her heart. And her youngest daughter is autistic, and she's been abused when parking in those parking bays. And there's multiple reasons why she has that, and I just don't know where this… I don't know how we can try to stop it and how to broaden people's perceptions of what they think is disability beyond themselves and what they're experiencing.
It's a real challenge, it really is, because having that interaction like that could very easily put you or her or anybody else off actually going out and accessing daily things, whatever that might be, doing your shopping. It’s something you have to do.
TLB
Yes, as to whether someone could potentially just come up to you and create a whole scene. Me, I literally smile for everything. So, I just let them go on with their day. I just let them carry on, and then I showed them the Blue Badge with my picture, and it was well like, ah, well…
CB
No apology?
TLB
Absolutely not.
CB
Oh, crikey.
TLB
We watched you go inside. Okay, well, where do we go from here?
CB
There's another man, actually, another gentleman who I interviewed on the podcast, and he has PTSD, and he has a prosthetic leg from a severe injury that he was involved in. And so, he’s basically got one leg, and so, he has a parking thingy. And he said that the amount of glares and stares that he gets when he parks, but they can't see, because if he's got his trousers on, you can't see he's on one leg.
00:37:24
TLB
And who knows if he's even comfortable to let strangers know that this is my reason?
CB
Exactly.
TLB
Why should I even have to explain it to you? Don’t get me wrong, I do know there are people that use other people's Blue Badges. I get that. However, what you're not going to do is try to do a citizen's arrest for something that belongs to me.
CB
As well as running Talks With M.S., you are a successful businesswoman and entrepreneur, a mother and everything else. So, in your view, how does the Hidden Disabilities Sunflower support disabled people in accessing and maintaining work and a career?
TLB
I feel like there's two parts to that. With the lanyards, in work, okay, so I believe it gives managers that kind of incentive to say, okay, maybe we need to have a conversation. For example, somebody could be wearing the lanyard, but hasn't necessarily disclosed that they have a disability of sorts. And if the manager is very aware of the Disabilities Sunflower lanyard and what you guys do, then it could be an, Okay, cool. Now, I've seen it, as a manager, and also from a HR perspective, we need to have a conversation.
And we need to maybe see if there's any reasonable adjustments that need to be conducted and how we can maybe put a plan together to better your day in the workforce and see how we can retain you as a disabled person.
00:38:50
Because I feel like retention is so important for people with disabilities in the workforce.
CB
Absolutely. If your employer is looking after you, this is in any scenario anyway, but even more, if, I think, disabled employees are given the satisfactory accommodations and workplace adjustments and feel that they're in a safe space where they can be their true, authentic selves, the retention is higher. You are going to stay, aren't you, because you're able to perform your job to a much more satisfactory level for yourself as the individual, but also for your employer.
So, your employer is going to get the best from you. You're going to have a sense of self-worth, and promotion opportunities, etc., will be more easy to come by if you're actually able to present your whole self.
TLB
And also feeling seen because I feel like that's also very, very important. I know, luckily, obviously, when I went back to work, I had that manager, but I've been in a workforce where the manager, he thought he was really funny. He really wasn't. And he would put notes on people's phone, and on my phone, he actually put a sicknote.
CB
Oh, no.
TLB
Okay. First of all, he’s a silly guy, a silly, silly, silly guy because this isn't funny.
00:40:22
And this was a grown man, and at that point, well in his 40s, if not 50s. This isn't comical.
CB
No.
TLB
It’s strange, but, yes, that's people.
CB
But you see, back then, if that company had been members of the Hidden Disabilities Sunflower, all of the staff would have had access to our training videos and obviously, the podcasts and the Invisible Disabilities Index and all of these things that we provide. So, that's actually a very good example of why it's important that colleagues say to their companies, look, why don't you join this, because it will benefit everyone.
Because like you, you didn't become diagnosed until you were 27. Just because you don't have a disability today, or an illness, it doesn't mean that further down the line, this might not impact you.
TLB
I thought I was healthy. I thought I was fine up until… And it's just so strange. I went to sleep fine. I remember, we had a bit of a fiery argument, and I was fine. I went to sleep. I woke up. We were going to go café for breakfast, and I was like, what is this? Why do I still have pins and needles? It's been longer than 20 seconds. Why hasn't it gone yet? So, yes, just, you never know what tomorrow can bring, so be mindful.
00:41:45
So, 100%, those training sessions, the resources that the Disabilities Sunflower lanyard provides, and producing these podcasts and just genuine, continuous disability awareness is so important because you just never know what your tomorrow is.
CB
Are there any circumstances other than thinking about what we're talking about, work, but are there any circumstances, in which you've worn the sunflower and have had a positive experience?
TLB
Oh, God, yes. I went to Ireland, and I had the lanyard on. I don't normally do the additional…
CB
The assistance?
TLB
Yes, I don't normally do the assisted travel, but I had the lanyard on, and he just opened the gate for me, and he said, yes, go to that queue. And I was like, thank you. I was so happy, and the person I was with, they were able to come along as well. So, it was nice to be in a different country and for the lanyard to be known. And I think I put a post up on LinkedIn with the guy's name and everything, because it was just so nice, the way he… It was just so easy. I didn't have to think overthink.
Whereas I remember, I did go to New York that same year. I wore the lanyard, and it was absolute hell. I was actually in tears in the airport because I was like, why am I fighting so hard for a disability for a condition that I didn't ask for?
00:43:06
And they literally… It was horrible. It was absolutely horrible.
CB
That can be also quite a scary experience when you're in another country, right? You're not on your home territory, and to have a really negative experience and not be supported, it's not a place where anybody wants to be, especially after coming off a long flight and living with pain every day.
TLB
And with that flight, I actually did do the assisted travel, so that made it even worse. So, I was like, I've already gone through the checks, but what it was, because all of the people in front of me were in a wheelchair, it was just like, well, you're walking through, so why do you need to be here? And I was just like, well…
CB
Yes, that is so small-minded, and I think that's one of the things that people don't know, is that you can book assistance and not have to have the wheelchair. Because I've seen some comments of people saying, well, I don't need a wheelchair. Why are they put…? I don't want to go in a wheelchair. But we had a really great chat with Michael Connolly from Skywise, who’s laid it all out about how you can travel and have your needs looked after and catered for.
So, if anyone's listening to that, and they're thinking of booking a flight somewhere, do have a listen to that podcast first, because it's really informative. I learnt a lot from it.
TLB
Yes, I booked mine for the extra legroom, not because I needed the wheelchair, but that leg room on an eight-hour flight, it was necessary.
00:44:45
CB
Yes. And so, we're going to wrap up shortly, but I wanted to ask, what services do Talks With M.S. provide, and how can people access them?
TLB
So, you can access our services via our social media. All of them is @talkswithms, or via our website, where we keep up to date with all our events, whether it be online or in person. And that is www.talkswithms.co.uk. We provide resources, from webinars where the topics could be about life. So, we had one recently about partners with MS, because, again, it's important. They're on this journey with us. Or we do get medical professionals in to speak about different things that are happening in and around the medical MS community.
We do in-person events, and they can differ, from a football match, where the bibs would have different symptoms or different disease-modifying drug names on them, or we can have an in-person event where we have researchers come in. Again, that was, we had our first research event in May of last year. Or we have community events where we could, potentially, have a lived experience panel, and we make sure we get a really good sponsor in that could either provide drinks for us, whether it's mocktails or cocktails and pineapples.
Or for our launch, we had Wingstop provide the food for us. And we have goodie bags, and again, we partner with some really good companies that just want to help our community grow, that really just want to provide as much impact as humanly possible.
00:46:21
And yes, so we've got the webinars, the in-person events. We do one-to-one sessions, and for this year, 2025, we'll also be rolling out mental health first aid courses. And I believe that was so important, and is so important, for people with disabilities, for themselves, number one. And also, when they're dealing with others, because we need to sometimes maybe change the way we talk. And you won't know unless you know. So, net behaviour is what I'm focusing on for 2025.
CB
Brilliant. That's excellent. It's like a wraparound community service, in a sense, it sounds to me.
TLB
Yes, 100%
CB
And having been to your events in the past, I can definitely testify to the fact that everyone who comes, even though you don't know each other, it's a very open space, and people feel that they can connect with one another. And you do your best there to make everybody feel valued with the nice treats and what have you, that you work really hard to provide for everybody who comes along. And you've got a really nice network of volunteers as well.
So, for many different reasons, check out Talks With M.S. We'll put their details in our show notes as well, so that you can take a look and access any of the activities, events, and services that Terri and the team put on. So, thanks.
If you're interested in any of the advice discussed in this podcast, please follow up with your GP or health care practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to The Sunflower Conversations Podcast.
VO
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00:48:01
Find out more about us, or listen to this recording again by checking out our Insights page at hiddendisabilitystore.com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help. Have patience and show kindness to others, and join us again soon. Making the invisible visible with the Hidden Disabilities Sunflower.
00:48:29