In episode 10, Lauren conducts her first international interview with actress Katie Georgiou, who lives in London (UK). Katie has been living with Relapsing-Remitting Multiple Sclerosis (MS) since she was young, and waited 10+ years for her official diagnosis at age 19. In this conversation, she tells us what her flares look and feel like, gives her frank opinion of her experience with the National Health Service (NHS) in the UK, and shares about the perspective shift that enables her to survive with grace (hint: it’s all about taking responsibility for her healing and taking ownership of her condition).
Key links mentioned in this episode:
Poirot (with David Suchet)
Miss Marple (with Joan Hickson)
Columbo (with Peter Falk)
Prime Suspect (with Helen Mirren)
Murder, She Wrote (with Angela Lansbury)
Listen as Katie shares…
- how she first experienced symptoms at the age of 9, but wasn’t properly diagnosed with Relapsing-Remitting MS until she was 19
- that even when she was given her official diagnosis, she was never given an immediate treatment protocol – only prescribed an anti-depressant to assist in reducing the swelling in her brain
- that when she was given a diagnosis, she felt her world fall apart – because nobody told her what to expect or how to cope
- her initial concerns about taking anti-depressants as an artist
- what a flare looks like for her: incontinence, often uncontrolled muscle action, tingling and numbness in her extremities, slurred speech
- the key to her survival: finding the humor in her illness, and OWNING her condition without apology
- that, before she was able to openly acknowledge, cope with, and treat her condition, she felt like she was living with a monster…her behavior was erratic and she felt out of control (both of her body and of her mind). At this time, her illness had ownership of her – and her stress would increase her symptoms.
- that, as an adult, she was treated with steroids – and that this treatment was not only invasive and inconvenient, but was, at the time, not tested for long-term side effects. This lack of market research gave Katie pause and made her wary of being fed information without further research, and taught her to say NO: because she knows her body better than anyone else.
- her current health protocol: more regimented sleeping and a largely vegetarian diet, resting when she needs to, and taking active steps to control stress
- that she still struggles daily with the the concept of WHEN to share her health story – especially in work situations, where she fears judgment
- that, as an invisibly ill person, you make one of two choices: you become an advocate, or you get on with your life
- that, especially with neurological disorders, positivity of mind, spiritual health, confidence, and a lack of shame are key…but are often lacking in online forums, which can be full of “symptom porn”
- that key to her perspective shift is gratitude. It has allowed her to make peace with living with MS and lighten up, stop judging others for not understanding, and experience her body in a way that enables her to empathize with others
- that she is grateful for the NHS (UK nationalized health), but sees its downsides as well
- that no caregiver has ever asked her about how her illness affects her mood – which is central to the invisible illness experience
- the importance of representation, and our best MS example to-date: President Bartlet in The West Wing
- that stem cell and chemotherapy treatments for MS are not readily available in the UK
- that one of the best things those of us in the invisible illness community can do for ourselves is to become articulate about our needs and experiences – and be willing to share with others, without shame
- that we are ALL WORTHY of respect, care, and love – and that low self-esteem is rampant in the invisible illness community and we have to shift away from it
- the responsibility of artists and creatives to use their platforms to continue the dialogue about invisible illness and “taboo” topics in their work
Lauren: All right guys, welcome to the show! Today I’ve got Katie Georgiou with me. She’s an actress based in London. Katie has multiple sclerosis, otherwise known as MS. We’ve known each other for many years. So I wanted to have her on the show to talk about it. Katie, can you walk us through just the beginnings — when and how did you first realize that you were sick and that you had this going on?
Katie: Absolutely. I’m so happy to be here, Lauren…thank you! It’s an interesting story because my symptoms started very unusually. This is very unusual occurrence. When I was around seven years old, I would lose a bit of sight in my eye or I wouldn’t be able to hold my pen properly. So I would go to the doctor’s, and back then they thought maybe I was playing up, or maybe I was sleeping funny. I don’t know; they weren’t quite sure. They kept prodding me with a pin. I would go every six months to this lovely doctor and he would sit me down and get a pin and prod me with the pin. And I would tell him when I could feel the prod of the pin, and when I couldn’t. So this went on for years. It was absolute nonsense.
If you look at my exercise book at school, when I was in high school, I had lovely writing — and then there would be maybe two or three weeks when my writing was spidery because I couldn’t grasp my pen.
So this went on … or I’d be a bit weak or I’d lose feeling down one side … and it was just something, I just thought ‘Katie’s just weird.’ But I was actually diagnosed properly when I had a full-blown attack when I was 19 years old. Well, just before I was 19, and in my first year at university, they gave me a CAT scan and put me in the MRI thing and they noticed that I had a lot of scar tissue on my brain and at the top of my spine — which is typical of MS. So all of those different things were causing that scar tissue on my brain.
And they said, “Unfortunately, you have MS” —and then they just left me to it, to be honest. They didn’t give me any medication. They didn’t give me anything to read, really. So I was kind of at the mercy of the new, budding Internet at the time, which absolutely terrified me.
Lauren: I imagine Googling when you were 19 was probably very different from Googling now.
Katie: Absolutely, it was; it really was. I remember the day that I was diagnosed (laughs) … and the doctor was so attractive. This was really difficult for me. The main consultant was called Dr. Cartilage, or something quite hysterical; he was like a sub doctor. Anyway, he was tall, he was dark, he was handsome, he had to inspect my body and move me around, etc. So to be honest, after seeing him, I was really looking forward to seeing him again for my results, because he was so gorgeous!
And unfortunately at the second appointment when I had to get more results, it was, you know, “You have MS.” And to be honest, I thought, ‘I’m going to die.’ I didn’t even know what it was.
Lauren: So how long did it take you to discover what MS was, and what did your attack look like when you ended up in hospital then?
Katie: That’s a really good question.
Lauren: Essentially, tell us what MS is — for those who are listening who aren’t necessarily familiar with it. What is MS?
Katie: Well, it’s an autoimmune disease and it’s where your body attacks the myelin sheath, which … everyone has nerves, and nerve endings, and a nice, fatty protection called the myelin sheath. The thing is with MS sufferers, your own body attacks that, so all of the messages in your body get confused.
Lauren: So all the mobility and anything that involves a nerve ending …
Katie: For me, it could be optical, it could be all of it. It all kind of gets confused.
So you’ve got two sorts of MS. There is Relapsing Remitting, which is what I have. So I’ll go through many months, and sometimes in the past, years, of not many attacks or symptoms at all. And that will be peppered with attacks.
When I say ‘attack’, it just sounds really dramatic. It’s not what it is.
Lauren: It’s a relapse.
Katie: It is a relapse and it comes on very quickly. Some people’s may not come quickly; mine come on very quickly. So usually when I wake up in the morning, I will have no feeling in my legs or I will have really weak legs; or I will have really bad eyesight in one eye, or I will have really bad pins and needles in my hands. So I’ll be unable to pick things up. That’s the usual one with me, the extremities. So when I do have an attack, I can’t really move very well, I have no control of my bladder. I can’t pick things up; I will put a glove on my hand, for instance, to aid me picking things up, or I’ll put two pairs of socks on. So you know, there are things I do so you wouldn’t necessarily notice it. Some people have attacks and they’re in a wheelchair, you know, for weeks. It really depends, person to person — it’s very individual — and you can’t plan. Usually people are diagnosed in their early 20s; with people who are diagnosed earlier, it’s usually about mid-20s. And then when people get it when they’re older or when their bodies are showing signs, that’s usually in their 50s and 60s. So those are the two age groups. It’s changeable. For one person, they may get diagnosed at 20 and not have one symptom for 20 years. Or ever again.
Lauren: And you’ve been through it. I mean, I remember you being in the hospital where your arm was moving and you couldn’t control it.
Katie: That was hilarious! I mean, it’s not hilarious …
Lauren: But it’s great that you can find the humor in it. That’s the important thing!
Katie: You might as well! I would have my middle finger up, and I’d be talking to somebody and my finger would just go up!
Lauren: Only you, Katie!
Katie: And when you have a glove on as well! Yeah, you’ve got to laugh. But it was really profound weakness. I couldn’t see, I couldn’t pick anything up to eat. I couldn’t dress myself, I couldn’t put my sanitary wear on — all of that kind of stuff. And also it kind of got into my tongue a bit, and my words were a little bit slurry, jumbled around.
Lauren: And eating probably was a little funny, too, I imagine.
Katie: Yeah! When you’re having an MS attack, you don’t really want to eat anything. It’s kind of like a sensory …
Lauren: Overload, maybe?
Katie: Like a bomb that’s gone off, but it comes on very quickly. And then usually with me it will last about a month, and then I seem to bounce back from them. So I’ll be bad for a month, and then I bounce back and I’m kind of how I was before the attack. As I get older, I’ve got no feeling from my knees down now, and my feet are completely numb. But having started symptoms when I was seven, I’m not doing too bad[ly], you know. I have a feeling that it will just slowly start coming up my legs, and maybe my legs will get tight and maybe walking will become more difficult. Balance is difficult as well for me.
Lauren: I know that in the beginning you were saying that there was no treatment plan given to you, no protocol. What steps did you take to take control of your health? Because I know that’s something that’s also changed a lot over the years for you.
Katie: Oh absolutely. I ran away from it; I was in complete denial I think, Lauren. I was 26 when I met you …
Lauren: And we’ve known each other for quite a while now!
Katie: My, that’s long!
So … I hadn’t really owned it all; it was something like a bad dream. I lived in constant fear of my symptoms.
Sometimes, I would sleep on my arm funny — the way people do sometimes — and it would be a little bit numb. I was just a bit of a hypochondriac with it.
Lauren: Fair enough!
And I think with autoimmune stuff and conditions, you can become a bit of a hypochondriac. Any little thing, any little change … because you become very good at tapping into your own body and what it’s doing and how it’s feeling. And the slightest change from the norm then starts a chain reaction of worry and this-and-that.
Like, what if I can’t walk tomorrow and I’ve got an audition, or whatever? Or, I’ve got a job interview, or it’s someone’s birthday? You go off in your head and you see all of the different circumstances … I’m probably not explaining it all that well…
Lauren: No, I think it makes total sense — but I’m also someone with an autoimmune disorder.
Katie: Exactly! You jump ahead in a second. So, I could wake up feeling funny on my arm … in a second, I’ve done all the different scenarios, the disaster that it could be. And then I’ve just slept funny on my arm and it’s fine in five minutes.
Lauren: Has that impaired your independence as well in some ways? Do you feel like you always need to be living with someone in case you need help, or have someone on the end of the line? How does that look for you?
Katie: Very good question. For many years, I lived with partners… poor them! … and I hadn’t really owned it so I was just an a**hole most of the time.
Lauren: I liked you then! (laughs)
Katie: You know … you kind of make them into a hypochondriac as well, and they’re not quite sure what to do. And you give your symptoms funny names like, “I’ve got a clicky throat,” or, “I’ve got a flicky hand.” Sometimes I’d wake up, and I felt like I hadn’t woken up and I was still in a dream. That went on for quite a while. That’s just weird, you know … just weird things like that. Or I just wouldn’t sleep for days on end, and I would just be absolutely wired, just writing stuff.
Very strange behavior. And I think that was because I was feeling out of control, that my body was betraying me. It was like living with a monster; that’s what it was.
Lauren: Well, you were living with your own monster, weren’t you?
Katie: Absolutely. That’s really interesting … I was referring to the MS as a monster. But exactly, I was probably the monster they were living with, too.
Because I didn’t own it, Lauren. That was the thing. I didn’t own it then at all; it had ownership of me, and I didn’t feel in control. And the more that I was fearful, the more fear I had, the worse the symptoms would get.
It’s neurological, so anytime you’re feeling fear or you’re feeling traumatized or stress or whatever it is … you can bet with me, it’s usually about four weeks, and then I have an attack. That’s the way my body is. It’s like a self-fulfilling prophecy that just goes round and round.
Lauren: It sounds like there needed to be a psychological protocol as well as a treatment plan for the autoimmune condition itself. So when you were first diagnosed, you weren’t given anything?
Katie: I was given some amitriptyline …I think that’s like an antidepressant.
Lauren: So you were given an antidepressant before you were given some medication [to treat the MS symptoms]…?
Katie: It would release the swelling in the brain. I think there are different strands of antidepressants. So rather than change my mood or whatever, it was to decrease the swelling or something in the brain. I don’t know … I think the nerve endings were swollen, or something like that.
Lauren: And how has that changed over the years? Have there been times when you’ve been on a million medications and supplements? Have you been in hospital receiving treatments? I know now you’ve really pulled back on a lot of your treatment as well.
Katie: Yeah, with the amitriptyline and stuff, and I would be on other meds. But as an actor, as you know, you really want to be present in the moment. You want to be reacting with people. You want to be there, you want to feel. And to have something dumbing you down — which I did feel. Although it wasn’t the depression, but the antidepressants were to calm me down. I did feel that just wasn’t Katie. And if I’m to be a true actor or a true artist, to reflect the world around me: I have to be true. And I had to see what the truth was, and feel it and touch it and taste it — without having some kind of Michelin Man coat on with these medications. So inevitably I’d take them, then I’d have this epiphany to just stop them — which is absolutely not what you do with antidepressant tablets. So that was kind of difficult as well. So, yes, I was on a lot, then I really wasn’t; it didn’t suit me. And they were really forcing me and making me feel very silly, actually, to go on steroid treatment.
Lauren: That’s right. I do remember you on the steroids.
Katie: And the steroid treatment is, not just take some tablets; it’s like chemotherapy. It’s put in intravenously; you have to be there. You have to go to the hospital many times a week for this. You have to have someone to sit with you. It’s very invasive. It’s an invasive thing, and to be honest, very new medication — so they couldn’t actually tell me what was going to happen after 10 years. Because the studies haven’t been going on for that long. But in turn, that’s all they could throw at me, and it took every ounce of myself to say ‘no’ … even when the doctor was saying, “You’re not in your right mind; you’re going to get worse. You’re going to be in a wheelchair. Is that what you want?” Just to say, “No, I think I know my body better.” And once you start down that avenue, I think my life … it wouldn’t suit.
Lauren: So what’s your protocol now?
Katie: Now I’ve changed the way my life is. I’ve changed my sleeping, my resting time, what I eat. I still smoke and I still drink.
Lauren: Well, you’ve gotta live your life!
Katie: Exactly! I mean I’m not like a big cake fiend or anything. I’m mostly vegetarian.
It’s about managing my stress, not taking things so seriously.
If I do feel like I’m getting a bit of fatigue or whatever, I have a sit-down. And when I do come home … bless the people I live with … but I’m in my room. It’s a darkened room, and I just lie there for 12 hours. I sweat it out, and I do what I have to do, and then I’m up the next day, hopefully. I suppose if anything has taken a hit, it’s my social life – but that’s cool. I can’t be out painting the town red. And once I owned what was going on with me, then it was fine (with my roommates), and I can just speak to them and talk to them, and say “We’re not talking now,” and it’s fine. I think the problem comes when you’re meeting new people, in jobs. So let’s say it’s an acting job, and people are shifting the set around, and you’re sitting in the corner and they’re looking at you like, ‘You’re not pulling your weight, man, you lazy b*tch.’ And you think … is this the right time to tell you what I’m doing? Or is it not? So that’s kind of difficult sometimes. But I think maybe we’re really lucky to be in the industry, in what we do … because it’s freelance, so we can own that. I think if I was in a high-powered job, like in a bank or something … I don’t know when you tell people. That’s a really hard one. If I was in industry, or I was a barrister, or whatever … when is the right time to tell your employer? And your colleagues? I don’t know.
Lauren: When did you tell us? I’m trying to remember. For those of you who don’t know, Katie and I went to drama school together.
Katie: I didn’t until I was in the hospital.
Lauren: I seem to recall, yeah … nobody sort of knew, and then you had an attack and ended up in hospital. That was the one where your hand was moving and your middle finger was up.And that’s when you came out and told everyone, and you had a few attacks after that, but still managed even to do final performances — with support, and with a walking stick.
Katie: When I had my cane for our final play, I was having an attack and it was really stressful. But thank goodness I was playing some old witchy woman. I don’t think every character would have had a cane, but she totally worked the cane and it looked good and it was fun! And then I remember, halfway through one of the performances, as I was getting better, I didn’t pick up my cane.And backstage they were, like, “Katie, do you realize you’ve left your cane over there and you’re walking??” So what do I do … do I pick up the cane again as the character, or as Katie, or what? And then interestingly enough, afterwards, someone said to me, “That was a really nice touch with the cane.” And I said, “What do you mean?” And they said, “Well, obviously she’s such a horrible character. She’s pretending to be lame, but she’s not. And it’s all just a cover-up and she’s such a manipulator. That was a really nice touch.” And I was, like, “Yeah, totally.”
Lauren: That’s so great! So, did you discover that you needed a personal advocate at any point in your journey with MS? And if so, how has that impacted your relationships? Or, are you your own advocate?
Katie: I am my own mouthy advocate, absolutely.
I don’t think I’ve relied on anybody to speak on my behalf or represent me. I don’t think so. And I don’t think I would.
But perhaps in the future, there may be a time when I can’t speak; that might actually be something that happens, you know. So I really need to think about that, and put that kind of down somewhere so that somebody would know what my wishes are … what my moods are … somebody that would know me on that level. So that’s a really interesting question. I have been my own voice as far as being an advocate.
But then … I don’t know how you feel, Lauren … but when you have something like this, you choose one of two paths — you either become the spokesperson and make it your life’s work to speak up about this stuff, or you absolutely do not and you just get on with your life and it’s just bad luck, it’s what’s happened. I’ve danced between the two.
We did a play a few years back at the RADA Festival, which we’re bringing back — The MS Play. In the play, there is no explicit reference to MS at all.
Lauren: Oh, how interesting!
Katie: That was on purpose; you weren’t quite sure what was wrong with her. But it was somebody who was marginalized, who was lonely, who was on their own, who didn’t have an advocate and didn’t have that voice. And somebody comes around to fix her computer. To get her into society, I think her family have sent some young guy around, and so she’s there with this young man in her flat. It’s funny, but we don’t explicitly talk about it. Because, I’ve kind of found … you’ve got your forums and you’ve got your chat rooms and all of that stuff. And when they’ve plucked up the courage to go on and talk, it seems to me …this can sound really negative … but it can get a bit symptom-porn. Do you know what I mean by that? Actually, you come away from it feeling much worse. And oh, is my arm actually a little bit numb? And your brain starts after that. You start to, you know, hypochondriac-ize yourself! And it’s not positive. It’s, what story do you want? What are the side effects? It’s not positive. And I think that needs to change. Especially with neurological disorders, positivity of mind is key. Absolutely. Spiritual health, soul health, person health; no fear, no shame; confidence. Those are things that are really important and I just find them lacking in these forums.
Lauren: Well, how did you actually end up in a headspace where you do have the strength? Because you obviously went down the path first of maybe not having as much confidence in yourself … in order to have that turnaround. So what did that look like for you on the journey?
Katie: It began disastrously, and it’s just got better through experiences — bad experiences, good experiences. But knowing that I’m in charge of my destiny. My faith is really important, and it’s kind of being thankful for this.
Being thankful for having MS — and that sounds really strange —once I kind of thanked it, once I made friends with it, once I had a good laugh with it and found my sense of humor about it, things lightened up a little bit. And once I stopped judging people for not knowing what was going on with me. Once I stopped expecting people to know how I was feeling. Once I was thankful … in a year, there are a couple of months where I feel physically that my body is like a 70-year-old woman’s. What a privileged thing, to feel like that.
So now when I look at a 70-year-old woman or whomever, or someone in pain, I know what that’s like. What a privilege, and especially for an artist – especially for an actor. Once you change your head around … and that’s not for everybody, of course it’s not … and there are dark days … but once you make friends with it, it’s part of me. It’s not separated. It’s what makes me. Every movement I do, everything that I am physically … is that as well. We are spirits, but we’re body together … so, you know, I can’t get away from it. And I don’t think it helps when you start running away from that thing, that weirdly, defines you. But if you make that a good thing, that’s totally changed my perspective.
Lauren: That’s really interesting. Now, obviously you live in England and your medical system is the National Health Service, the NHS …
Katie: You’re going to start me off now!
Lauren: I know! But this is an important part of the discussion because you’ve been in a different care space than perhaps a lot of the people who are going to listen to this podcast. Certainly from what I’ve experienced … I lived in the UK for many years, when you and I became friends over there … and I used the NHS. But I know, certainly with your condition, there are major differences in terms of the care protocols and what the care looks like, and I know that there’s a battle for the NHS right now. But can you talk a bit about your experience with the NHS and your understanding of perhaps the difference to the US system — and how MS might be treated over here? Because I think you’re familiar a little bit with what that would look like over here as well.
Katie: Well, first things first. Let me say I am a big supporter of the NHS. They were amazing, and they were fantastic when my mum was ill. They looked after her brilliantly, and they’re fantastic. My dad as well.
So I am a big supporter of the NHS, I have to say that. However … and it’s a big however … I was a 19-year-old girl given this diagnosis and left to my own devices. That, although it was many years ago, is unacceptable.
I would say the fact that no one ever asked me, or ever has asked me … and I was talking to someone about this, actually, a couple of days ago … nobody in my careplan (I’m laughing at that, because that doesn’t exist) … but through all this, and I’ve seen nurses as well (and you can call them any time … I don’t, but I could if I wanted to) … no one has ever asked me, “How are your moods? How do you feel? Do you suffer from depression? Do you have a history of mental illness in your family? Were there other disorders in your family that may look like this?” No one’s ever asked me anything. The only thing they asked me to do is keep a period diary — that, quite frankly, has absolutely nothing to do with anything. So that’s the kind of expertise you’re dealing with here. I know, from people I’ve spoken to when I was working on ships and people who live on the West Coast … one person in particular was diagnosed with MS straight away, and they were given a therapist. Straight away they were given a dietitian. They were given alternative medicine, holistic stuff, cannabis, blah, blah, blah. So all of that was open to them. Somebody here now who is diagnosed, maybe a young girl in her 20s, I don’t really see — having looked at these forums and stuff, in and out — that anything’s changed.
Your world falls apart. You think you’re going to die. You think you can’t plan for your life — which is a massive thing because you don’t know what’s going to happen — and then you’re just left to it.
I’m very disappointed, and I think off the back of this I will write a letter or something — because I feel in this country, so much money now is being put into mental health, dementia, Parkinson’s, all of these things. However, however … I can’t help but represent my peeps, my MS-ers … the MS-ers, or the MSers; I feel terrible for them. I’m really a long way down my journey. But that poor boy or poor girl who’s in their early 20s … they get that diagnosis, they close that consultant’s door, and then what? If they go on the Internet …oh my gosh, you’ve got worst-case scenarios on there! What do you do? And then maybe you’ll get misinformation, maybe you’ll get this, that, and the other. You’re not given any support. It seems that in America … whether people can afford it or not …
Lauren: That’s the big problem!
Katie: If it’s out there, then people can make decisions about their lives. Although they can’t tell you … okay, you’ve got MS, what’s going to happen? We don’t know. They don’t know why people have MS. They can’t say. Is it because we live in the Northern Hemisphere? Is it because you’re genetically predisposed? Is it because you’ve had a virus? They have no idea. It’s not just a white person disease — it’s a black people disease, it’s across everywhere. But they just can’t say. That is really difficult.
I’d love to see more money being put into it; I’d love to see more education being put into it.
We’re getting the odd MS-er on TV here. We have Martin Whats-his-face, the President of the United States in … what’s it called?
Lauren: Oh, Martin Sheen in The West Wing!
Katie: Yes! The West Wing!
Lauren: President Bartlet! He had the Relapsing Remitting as well!
Katie: He had the Relapsing Remitting, so he understood! Exactly! So, I just think we could really do a lot better here. And I don’t live in some back and beyond village, remember. I live in London, where I’m getting ‘the best of the best’ — and I really don’t think so. That needs to turn around, definitely. Sorry!
Lauren: No!! You’re being very English with your apologies!!
Katie: In Canada, there’s a high prevalence of people with MS because it looks as though, from what I can see, if it’s going on genetics, it’s kind of a Scotland/Northern England thing.
Lauren: Oh, interesting.
Katie: If you track where MS has gone, you know all these people went over to Canada. Anyway, I think it helps to track it, where it comes from, why …
Lauren: And the root causes.
Katie: The root causes, absolutely. And also my cousin … I don’t think he’ll mind me talking about this … he’s actually got something I can’t pronounce properly … it’s called Sjögren’s syndrome or disease. And that’s another autoimmune disease. He sent his blood off to America … and he had a lot of different symptoms … it’s very different to mine.
And he gave me a book and it says that if you have this Sjögren’s disease or syndrome, the likelihood that you will have a very close female relative with MS is a very high percentage.
Lauren: Oh my God.
Katie: I mean, it was just all there in this book. It doesn’t help anything, but it kind of makes us feel a little bit better and more in control. In my family, it is a gene problem because, although I am Greek Cypriot, my family’s from the northeast of England as well. There’s a mix of that.
Lauren: Have you thought about traveling for your care, like coming over to the States and paying out-of-pocket?
Katie: Absolutely, because nothing’s going on here. And the treatment that’s really had the best impact and cure for MS is the stem cells that they take from your own body — no one else’s, it’s your own stem cells they take from your body.
They give you a round of chemotherapy to really suppress your immune system and then they re-inject your stem cells back into your body. So it’s like a kickstart.
Lauren: And that’s not available in the UK?
Katie: Of course it’s not. However, I think in Germany and Spain they’ve done some trials; it’s had amazing results. And to me that kind of makes sense. So it’s something I would absolutely be looking into. But I’d like to get it over and done when I’m a bit younger, rather than when I’m older and maybe the damage is irreversible.
Lauren: Better to do sooner?
Katie: Exactly. I mean, chemotherapy’s pretty extreme, so you’ve got to, you know, have a certain health level to put your body through that. But it’s something I’m definitely thinking about. But it will cost.
Lauren: We’ve talked a lot about sort of releasing the stigma and how hard it is to find a work/life balance. And when do you tell people that you’re ill? How important is it that we keep talking about it? Do you think talking is part of the cure for the stigma, at the very least … that we just keep getting on our loudspeakers and our soap boxes and telling people?
Katie: Absolutely! We owe it to the people coming up. I owe it to that young girl and young boy who are being diagnosed today. I owe it to them. And doing this with you, Lauren, has kind of kickstarted me to do that because things need to change. And to speak to your friends. I mean, your friends are your friends, but just to speak to them. I think it can be quite easy to just be quite dismissive or, ‘There’s just stuff going on with me.’
To actually sit them down and say, “Look, this is how it actually feels. So this is what I’m going through.” It might not be what they want to hear, but I think you owe it to them and to your relationship with them that they know exactly what’s going on. And they want to know as well.
Lauren: And it’s not that they feel sorry for you either.
Katie: No, maybe they don’t want to bum you out by asking you. So the onus is on us to speak, to maybe talk about the not very nice stuff. You know, right now …I don’t know whether I have problems with my kidneys as well … but bathrooms and public bathrooms in this country are a really difficult thing. Because I can’t hold my pee; I need to go when I need to go. I’ve got my SheWee, but it’s a problem. It’s the thing that you put into your areas, and it’s got a tube, and you can discreetly wee …
Lauren: So you can go standing up?
Katie: Yeah, but I’ve been very close to using my SheWee, Lauren, because I get on trains for work and those bathrooms are locked, they’re disgusting, you have to pay for them… Anyway, I’m getting on my high horse about that too!
Lauren: But that’s a very basic human dignity thing, too.
Katie: With my friends and my colleagues, I tell them, “I can’t hold my wee so when I need to get to the toilet, I’m going.” So I’ll say stuff like that. Or when they see me grabbing my head …when I have really bad head pain, which is another symptom of MS … it’s like someone stabbing you in the head, And they’ll say, “Are you okay??” I’ll say, “Oh, it’s my MS pain, it will pass.” If we just keep it very normal, we don’t have to make a big deal about it. It’s just little dribs and drabs of information. But I think that starts with our friends and with our families and with our colleagues. Or else we’re just hypocrites, aren’t we, really?
Lauren: Well, I remember seeing you very much in your own dark place. You know, a decade ago, when you couldn’t come out and say those things, and you’d be going through something physically. And you’d be showing signs of some kind of symptom, but the words couldn’t come out of your mouth because you were having a fight with yourself about whether or not it was appropriate. And that was the thing that drove you into dark depressions in the past. And why go to that place if you can just say it, right?
Katie: Yeah, that’s a really good point, Lauren. Becoming articulate about your disease or your illness or condition. I like the word ‘condition’. If you are articulate about it. I think that’s good and that helps you in return.
Lauren: You once said to me, and it always resonated with me … you said to me when I last saw you in London … when I had recently found out that I was dealing with autoimmune stuff, too … you pointed to your forehead and you went, “It’s all in here! It’s all between your ears!” So much of your health and your journey to better health has been the mental shift.
Katie: Of course it is, absolutely. Positivity, sense of humor, world view … I mean, for goodness sake, ‘Worse things happen at sea,’ my mum used to say. Like, get on with it. Having perspective, doing the things that you love, having those people that you love around you, and getting things out that you’re keeping on your heart is very important. You know, if you keep things in too much, talking about shame … I’ve said that word before. I’ll say it again.
We carry a lot of shame. And I think that causes a lot of illness. Chronically low self-esteem. We say self-esteem, but what does that mean? It’s worthiness.
That word ‘worthiness’ sounds more helpful — to feel worthy of things, of happiness. Worthy of space, worthy of being understood, worthy of love. All of those things, I think, with people who have illness … I don’t know what came first. Especially with autoimmune … I might be getting a bit hippie now …
Lauren: No, I think this makes total sense because, for you, it’s part of the gratitude for having MS because it’s actually brought you back to yourself.
Katie: Absolutely. Absolutely. It is that.
Lauren: And your faith has certainly also helped you in that as well.
Katie: Faith also always gives you perspective. Faith is yourself looking in; it’s not you looking out. It gives you perspective on things, and it gives you kind of a calm. Whatever that might be, whatever faith or spirituality; whatever that is. Lots of people meditate.
Lauren: Yep, that’s what I do, because I’m not a particularly religious person. So I meditate.
Katie: People are finding that helpful to them. I call mine prayer, you know, but it’s the same thing. It’s just that timeout. So that is really helpful. But we have a long way to go.
And we need to use our soap boxes, and I think; as artists and creatives, we have even more responsibility.
Lauren: Yes, absolutely. And doing something like The MS Play and bringing that back … Well, we’re getting to the end. This has been such a wonderful chat, Katie, and I like to wrap up the interviews with a couple of Top Three lists. I’m wondering what your top three tips would be for someone who suspects that they may have something off, or are living with invisible illness, be it MS or anything else … what would your top three pieces of advice be?
Katie: Well, first of all, I would say … speak to somebody about it.
Once you voice it, then it’s not the demon anymore.
It’s not the devil; you’ve said it. People say seek help, you know, whatever that might be. Or maybe don’t even go that far because it can be a bit scary. Maybe speak to a friend or somebody you trust. This is off, that is off … just don’t leave it.
Lauren: Don’t pretend it’s not happening.
Katie: Take action. And I think I said it before … if someone has something wrong, have a sense of humor. Or if you don’t have a sense of humor, find it. It will be your friend throughout everything … that’s really, really important. I think that was my second one. And my third one … love yourself. Don’t be so judgmental of yourself or others.
Lauren: Find compassion.
Katie: Yeah, stop trying to be perfect. I tried to do that so hard. I did it really badly … you know, so yeah.
So: Seek help. Find your sense of humor, or get one. No judgment of yourself, or anyone.
Lauren: I know you said that right now you’re eating pretty clean, and you’re pretty regimented with your sleep, and that kind of thing — in order to keep symptoms at bay. But do you ever cheat on treatment and lifestyle?
Katie: Of course, I do!
Lauren: Smoking and drinking!
Katie: I do! Sometimes I go for a whole week without that, and then I’ll just have a little blow-out. That’s just how I relax.
Lauren: And that’s what works for you! What would you say are your top three guilty pleasures or secret indulgences or comfort activities — when you have a flare-up?
Katie: Well, you’re probably going to think I’m crackers! But number one, I find a good hummus— which is expensive, unless it’s on offer. So the good hummus, I will buy it.
Lauren: Love it!
Katie: It’s just little things, isn’t it!
Lauren: Simple pleasures!
Katie: And I think the second thing I do is watch … it’s kind of Netflix generation now, isn’t it? And I’ve always liked watching things back-to-back. So my guilty pleasure … and I’ve done it actually a little bit today …is watching all of the ITV old Poirots.
Lauren: With David Suchet?
Lauren: We know! Columbo is one of your all-time favorites!
Katie: The ‘70s ones! And it’s just like comfort, because I know what they’re going to say. And Prime Suspect, as well. Jane Tennyson with Whats-her-nuts in it. I know what they’re going to say. It’s my comfort and I love it. And it’s my escapism, and I don’t have to think and that’s what I like. So that’s kind of what I do. I pull out a bit of my Columbo or my Poirot, yeah. And the third one is a really odd one. You’re probably going to get this …
I allow myself to daydream.
Katie: But excessively. When I’m having an MS attack, my dreams become very vivid, very colorful. And I think when my body’s breaking down, or it’s confused, the only outlet I’ve got is my brain.
Normally people will daydream and go, ‘Oh, I wonder about this.’ And go off. But I just don’t bring myself back. I just carry on for a very long time.
Lauren: So you activate your imagination?
Katie: Yeah, and it’s amazing and it’s beautiful and I love it. An hour could have gone by, but I’ve just escaped my body, just for an hour, to give it a break.
Lauren: And we wonder why you ended up an actor!
Katie: Does that make any sense? Because your brain goes off if you’re driving, whatever, and you go off and then you have to bring yourself back. But what if you just let it keep going?
Lauren: Well, in a way it can become a manifestation or a visualization of things that you want as well.
Katie: It gets all of the endorphins up and it just makes me feel high and good. And the other thing is, with an MS attack, I am the cheeriest person!
Lauren: Yeah, you are, actually!
Katie: And it’s not just me. It happens with people with MS, when they’re having an attack; they’re overly cheery. Isn’t that interesting?
Lauren: So is it something to do with your glands and your brain and whatever chemicals are released?
Katie:I don’t know. You’re ultra-positive when you’re having the attack. And again, not everybody. I won’t speak for everybody. But then, when you’re coming down from it, that’s when … it starts. But you’ll have a clear point. It’s bizarre.
Lauren: Well, I suppose that’s kind of a bonus. It’s one way to find the gratitude.
Katie: You’ve gotta have a sense of humor.
Lauren: And it’s interesting also that you mentioned all those crime shows that you watch, because in those shows, there’s always a dead body. Maybe … it’s not you.
Katie: Yeah, exactly! I’m just obsessed with that Agatha Christie. I’ve watched Murder, She Wrote, but it’s not the same.
Lauren: No, it’s not the same, but it’s pretty damn good. We like Murder, She Wrote over here.
Katie: Oh, I love it all. Lansbury … come on, we love Lansbury! But it’s something about Agatha Christie. Everybody looks really beautiful; it always looks so lovely.
Lauren: And everything gets tied up nicely with a bow at the end, too.
Katie: It does! It’s just what I like. And Columbo, because he’s amazing. Peter Falk!
Lauren: Katie, this is all so wonderful and I really hope that this information will be helpful to people who are listening, because there’s some great advice that you have to share. And thank you so much for sharing so honestly about your experience with MS as well.
Katie: Again, I don’t speak for everybody because everyone’s MS journey is very particular to them.
Lauren: Katie, thank you so much for taking the time to be on the show. I can’t wait to get this episode out there for everyone. And hopefully we’ll be seeing you treading the boards, on the stage, very soon.
Katie: With or without cane! I’m really looking forward to the electronic chairs!
Lauren: (laughs) Speaking of a sense of humor, and knowing Katie as well as I do, I’m going to say that the minute you get in one of those electronic chairs, you are going to be running people over like it’s your job!
Katie: I want there to be a dog, and a big flag, and a sound system.
Lauren: (laughs) We’ll take you in a parade!
Katie: That would be amazing. I’ll do the shopping in my basket.
Lauren: That’s great. That’s super! I can send you on shopping runs then.
Katie: Grayson can fit in my basket.
Lauren: For those of you who don’t know, Grayson is my cat and he’s pretty great. Katie, thank you so much and hopefully we’ll talk to you again soon.
Katie: Okay, thank you!