TW: This episode features a graphic description of a car accident.
Anisha Gangotra is an inclusive dance instructor living in the UK, and the sister of former guest Trishna Bharadia. In 2008, at the age of 24, she was diagnosed with ulcerative colitis (UC) – an autoimmune condition that attacks the gut. Shortly after, in 2011, she was a victim in a high-speed car accident; during her long recovery and rehabilitation, she was additionally diagnosed with PTSD, depression, and anxiety. For the next 4-5 years, she sought to access mental health treatments such as CBT (cognitive behavioral therapy), EMDR (eye movement desensitization and reprocessing, covered in Episode 11 with Michele Sherman MFT), and others – but in some cases, it took years for her to receive proper access to these treatments. In a total career shift inspired by her own experience, she also began working full-time to support people with mental health issues in the workplace – be they seeking work, navigating discrimination, or considering leaves of absence. In 2015, she began to teach inclusive dance classes – designed for people with disabilities/long term conditions, as well as for those without – partly for her own mental and physical health, but also to provide a safe space for others with similar conditions to rediscover freedom and joy in their bodies – in a safe space.
Key links mentioned in this episode:
Trishna’s Episodes of Uninvisible Pod:
Tune in as Anisha shares…
- that colitis (including UC) is under the same umbrella as Crohn’s – the inflammatory bowel diseases (IBD)
- that she first detected the potential for UC when she passed blood in her stool
- that her diagnosis was not straightforward
- that UC consists of flares and periods of remission, much like many other autoimmune diseases
- about the period of onset, during which she questioned her own sanity
- the relief of receiving a diagnosis
- that her first colonoscopy was administered without sedation – or explanation
- that she now has a medical team she truly trusts – even though she has to travel quite far to reach them
- the importance of connecting to a chronic illness community
- her road to recovery post-car-accident: not just physically, but mentally
- how she discovered she was living with PTSD – she began to jump at loud noises, or feel triggered at the smell of smoke, crushing metal (cans), etc
- her journey through therapies to treat her PTSD – she started with CBT (two rounds), but found EMDR to be most effective
- that CBT gave her behavioral techniques to cope with triggers, but EMDR helped to remove the triggers entirely
- a description of how EMDR works to engage both sides of the brain, allowing it to get “unstuck”
- that she lived with her PTSD symptoms for 4 years before she found EMDR – and she believed, the entire time, that she wouldn’t have to continue to live her life in fear
- that she was also diagnosed with anxiety and depression associated with her PTSD – all of which emerged after her car accident
- that she decided something good must be able to come out of her adverse experiences – and so she changed careers and began to work in the mental health field, assisting those afflicted with employment concerns
- that she sees her experience as a major strength in her job
- that she discovered Zumba as part of her recovery, and fell in love with it – specifically because it wasn’t about getting it “right”, but about enjoying it
- how teaching inclusive dance inspires her
- the role her family has played in her ongoing care
- that healing is not linear, and she still has dips in her mood from time to time – and that this is OK
- that the responsibility of teaching her class and showing up for her students has helped her work through her moods and been key in her healing
- a study of her resilience – and an acknowledgement of her strength
- how she practices self care and manages her symptoms – and lives a full life
- the importance of doing one’s own research as a patient, and seeking targeted treatment by becoming engaged in one’s care
- the importance of travel to expand her perspective – despite its challenges to her health
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Lauren: Okay guys, thank you so much for joining us today. We are here with Anisha Gangotra. Anisha is the sister of Trishna Bharadia, who’s been on the show before; we’ve also got an episode coming up with the two of them. Anisha is an inclusive dance instructor, which she’s going to tell us about. And she lives with chronic illness and mental health issues that she also advocates for. So, Anisha, thank you so much for joining us.
Anisha: Thank you so much for having me!
Lauren: It’s such a pleasure! So why don’t we start from the very beginning. I know you live with various forms of illness, so this will sort of be an umbrella to cover them all. But when and how did you first realize that you were sick with these concerns? And what steps have you taken to control your health?
Anisha: So, it really started for me in 2008. That was when I started to experience symptoms, which I would later be diagnosed with — colitis, which is one of the main forms of Inflammatory Bowel Disease [IBD]. That’s alongside Crohn’s. So you have Crohn’s and you have colitis — which, under the umbrella, are termed Inflammatory Bowel Disease. So, in 2008, my first symptom …
I went to the bathroom and went to flush the toilet, as you do, and I noticed that there was blood in the bowl. I thought, Okay, that’s not normal. What’s going on here?
Lauren: It was obviously off your cycle, too? So it wasn’t like you were menstruating?
Anisha: Yeah, absolutely. So I made an appointment to see my family doctor. There can be lots of different reasons for passing blood. I suppose that was the start of my journey. It wasn’t a straightforward diagnosis. I saw various doctors, went to various hospitals; there were various terms bandied about, which, to be honest, I didn’t really understand.
They were never actually explained to me … This is what we’re talking about. This is what it means.
I suppose it was the first time for me, personally, where I was really having to use the healthcare system in what I would say [was] quite an intense way. In terms of symptoms … with colitis, essentially what happens is you have periods where the disease is active — which is what we call a flare-up. And periods where you are in remission — when the disease isn’t active, when there isn’t any inflammation that we’re aware of. So, in terms of what the actual condition is … colitis is an autoimmune condition. My immune system thinks there’s something wrong in the body, and the immune system’s way of reacting is to then cause inflammation; that’s our sign that something is wrong. In colitis, that inflammation is within the gut. So what happens is, the lining of my bowels become inflamed and become ulcerated. And that’s obviously where the blood comes in — because of the ulcers and the inflammation of the lining. It also has a whole host of other symptoms — like diarrhea and bowel urgency, severe stomach cramps; I get back pain, I suffer with fatigue. And then you can also get symptoms which you wouldn’t necessarily associate with the gut. People with Crohn’s or colitis can actually get inflammation of the eyes, for example, or inflammation of the joints. There’s a whole host of symptoms. And I went through a number of years where this was happening on and off. It’s a bit of an odd one because when you’re feeling fine, you sort of think, ‘Was I just imagining it? Did I just have a stomach bug?’ Or, ‘Was the pain really that bad?’ … when it’s kind of gone …
Lauren: You start questioning your own sanity, don’t you?
Anisha: You really do, because you can always put it down to something … maybe it’s a bit of irritable bowel syndrome. Maybe I ate something dodgy. Maybe I’ve got a bug … But these symptoms, essentially … they carried on in a cycle. It took a couple of years until eventually I saw the consultant who I’m currently seeing.
Lauren: And this is the consultant you travel pretty far to get to?
Anisha: I do. I travel 80 miles round-trip to see this consultant now. This consultant is someone who was recommended to me, which is part of the reason why I travel. But also within the hospital where I’m seen, not only do I have a consultant who is a specialist in this area, but there are also specialist nurses as well. My symptoms started in 2008; I essentially take that as the year I was diagnosed, because it was sort of a little bit here, a little bit there. There wasn’t really a definitive date. But it actually took two years — it was 2010 — when I eventually got to see this consultant. I remember being in that appointment and she was asking me about my symptoms … what’s been going on? The quite standard questions that they ask … how many times are you having a bowel movement? What’s the consistency? Are you passing blood? What other symptoms do you have? I remember explaining things to her, and at that point, she said to me, “Yes, it sounds like colitis.” Obviously, I would need to have tests — for example, a colonoscopy — to see how far it is, and there are different types of colitis depending on what part of the colon is affected. But I remember at that point her saying to me, “This is a lifelong condition. We have to manage your symptoms.”
And I think that was the first time it actually hit me. ‘This isn’t just going to go away, this isn’t just going to be cured.’
But also the relief, the amount of relief … in terms of being told: “This is what it is. And we’re going to put a plan in place to see what we can do.” For the first time, I actually felt like a doctor had heard me. I broke down in tears, because I actually just felt like I had been listened to. Which was a huge thing for me; it was massive. With the experiences that I’d had, with various doctors prior to that … At one point the doctors said to me, “Well, we don’t think there’s anything wrong with you. So we want to discharge you.” I was sent to a hospital to have a colonoscopy with no preparation, no sedation. I wasn’t offered any sedation. The whole procedure wasn’t explained to me. That was my first experience.
Lauren: Oh, that’s dreadful.
Anisha: And they really struggled to perform it. And bear in mind, I had inflammation of the bowel. So if you put anything there, obviously, it’s hugely sore. That whole experience was really quite difficult. Going forward it made me feel like, I don’t want to have these done. It was awful. It was horrible.
Lauren: And very invasive, too, without preparation.
Anisha: Hugely invasive. Even when all the nurses and doctors are great … I’ve had plenty of colonoscopies and sigmoidoscopies over the years now … and even when they’re lovely and all the preparation is done, it’s still not pleasant. I call it my internal photoshoot. I like to do preparation, making sure I’m nice and clean and all that kind of thing! I have to do my makeup and my hair and everything! (laughs) It’s hard enough when everything goes well, let alone when actually it’s not done right. And that is your first experience. I was only sort of 24, 25 at the time; that, in itself, was pretty traumatizing. And that’s one of the reasons why now I do travel to see a specialist consultant. I have the specialist nurses who I can leave a message for and they will phone back, or I can drop them an email; they’re usually my first port of call now with anything to do with my colitis. When I went traveling … I decided to take five months off and go traveling in South America … my IBD nurses were my first port of call to say, “Right, this is what I’m going to do. This is what I’m thinking in terms of preparation. What I should take with me?” They were my first port of call to actually discuss, “Okay, how might it affect me? What things can I put in place? How can I prepare? What can I make sure I’ve got when I’m there? Do I need to book in an appointment with you once I get back as a check-in to see how everything is going?” It’s tough traveling that far. But I’m also privileged that I’m able to do that, to get the health care and to see my consultant, who has been brilliant. I’ve been with her now for nine years. I’ve joked with her, saying she’s never allowed to leave the hospital. And if she does, then I’m following her wherever she goes! So I hope she moves to a tropical island somewhere!
Lauren: (laughs) That sounds nice!
Anisha: Yeah! So I suppose that was my first condition, chronic long-term health condition. And again, I was 24, I was starting out in my career. So, trying to manage all these things … have a social life, have a career, manage these symptoms. It was pretty tough, it was pretty hard going. But again, I found ways to cope — in the short-term and long-term. Coping through managing my food, for example; in the short-term, when I’m having a flare-up, what are the things I can do in terms, for me personally, with my food. Making sure I’m trying to get enough rest … disturbed sleep, getting up in the middle of the night to go to the bathroom … all those kinds of things. Over the years, you build up a lot of experience. And also, listening to other people, meeting other people who have the condition, being able to share your tips and experiences as well, is a really valuable thing. There is a community out there, which is really positive. So I suppose that was kind of my first claim to fame in terms of: ‘Here’s a chronic illness and I’m flying the banner!’
Lauren: Here’s your first one. Because you’re so lucky, you have more than one!
Anisha: (laughs) I know! It’s just wonderful, it is! So that was in 2008, when I was 24. And then in 2011, when I was 27, I was involved in a high-speed car accident. So it was all pretty traumatic. It wasn’t my fault; I was just in the wrong place at the wrong time. I was driving along a dual carriageway. So the speed limit is around 70 miles an hour. Well, the speed limit is 70 miles an hour, but people traveling up to that speed … and I was driving along one side of the carriageway, and another car driving in the opposite direction … for some reason, and we don’t know what happened or why … completely lost control of the car. And it basically spun over, flipped over the central reservation into the air. And then the first thing I knew of anything happening, was literally seeing this car up in the sky. It was literally up in the sky flying towards me, and me just thinking … What do I do? Do I slam the brakes on to see if I can stop the car before it lands? Or do I try and hit the accelerator to try and speed under it? Whatever I did, I didn’t miss it. It hit me; essentially, it landed on my bonnet and rolled over my car. Actually, I think I’m very lucky because if it had been at a slightly different angle or gone through my windscreen … she was probably traveling around 70-ish miles an hour, as well. When you think about the impact … and I can still see it in my mind … it’s actually something that you would kind of see from Fast and Furious!
Lauren: You see it in slow motion, as it plays back for you.
Anisha: Yeah, actually yeah, it does play in slow motion. It felt like everything was in slow motion, even though it was probably no more than a couple of seconds. But it looked like some crazy stunt you would see and think, ‘Oh, don’t be ridiculous, that would never happen’. And I remember kind of dragging myself out the car, waiting for Vin Diesel or Dwayne Johnson to come and rescue me!
Lauren: That would have made it more worth it, right?! (laughs)
Anisha: Yeah! (laughs) Exactly. Some handsome man is gonna come rescue me! I was very lucky … there were paramedics, the police were there.
Lauren: And you were able to get out of the car.
Anisha: It was surreal. It was like this instinct kicked in. I remember I was driving along and I was wearing my glasses while I was driving. They had flown off in the impact because the airbags had gone off. So I remember thinking, ‘Okay, I need to find my glasses’. So whilst I was trying to find my glasses, I realized I could smell smoke! And I thought, ‘Okay, that smoke has got to be coming from my car. If there is smoke, there’s a possibility that, one, my car could be on fire … but two, if there’s fuel around, then that’s it, you’re looking at an explosion’.
Lauren: So you were, like, you’ve gotta get out.
Anisha: Yeah, absolutely. Luckily I found my glasses. I don’t quite know how I did, but I found my glasses, and just went, I need to get out of here. I had no idea if I had any injuries; that didn’t even cross my mind. It was literally: I need to get out of this car. I remember I tried the driver’s door, and it was completely jammed — I hadn’t realized that was actually from the impact. So I kind of went, I can’t get out. What are we going to do? So I climbed between the passenger seat and the driver’s seat, in that little gap … I managed to climb through there and open the back door, which did open … and basically just crawled along the road to the central reservation. But then also I was aware that: ‘hang on a minute … there are going to be cars coming down this dual carriageway. So if I’m in the middle of the central reservation, then what’s going to happen?’ But I was very lucky because the police were there, they stopped the traffic, everything got cordoned off. And then I started worrying, ‘Oh my gosh, all these poor people are going to be really late for work!’
Lauren: I love that that’s what you were thinking about!
Anisha: Yeah, honestly! I could see the traffic building up because they had diverted the traffic. And I remember I sat there. I had someone looking after me. There were some paramedics there, they were wanting to put a neck brace on me and everything. And I remember literally sitting there going, all those poor people are probably worried that they’re going to miss a train, or they’re going to be late to work. And I’m sitting here and it’s all because this has happened.
Lauren: Survivor’s guilt, right?
Anisha: You know, I think it really was because that stayed with me for quite a long time. Obviously from the accident, the impact, I have physical injuries. I was hugely lucky that it was all soft tissue injuries. No broken bones, no life-changing physical injuries; it really was a miracle. I was taken to hospital and checked and scanned. But the emergency services spoke to my parents, and they said, “We’re so thankful because we saw the carnage and we were expecting to literally just be pulling out bodies from it.” So the fact that one, I survived, but two, with no lighter injuries, was huge. But even in terms of soft tissue injuries, it took a good few years … a long, long time … to recover. And overnight, I got to experience what it was like to almost basically lose all your strength. I was struggling to be able to get dressed, I needed help getting in and out of bed. I couldn’t cut up my food … you think, well, it doesn’t take that much strength to cut some food. But actually, when you don’t have that, you realize just how much of your body you used for the most simple tasks that we actually take for granted. And I was very lucky; my family were brilliant, they really helped to take care of me. I started having rehab; I was having to do therapy and that was really important for my physical rehabilitation. What I didn’t realize, was that I was then going to go on to develop Post Traumatic Stress Disorder [PTSD]. And then I also suffered with depression and anxiety as well.
I think I was so focused on my physical rehab, I wasn’t really paying attention to anything else. I just thought, it’s normal to jump every time I hear a sound, it’s normal to not really want to get into a car, it’s normal to have bad dreams. And actually, it took time for me to kind of realize, and also to get a diagnosis as well. And then go on to have treatment.
Even in terms of some of my triggers … so smelling smoke, if someone was having barbecue … the smell was a really strong trigger for me because of the smoke that had been coming from my car. Sound … so if someone would finish a fizzy drink can and then crush it and throw it in the dustbin, that sound would trigger in me — because that sounded like the crushing metal of the cars from the impact.
Lauren: It all makes sense. The connections are very direct.
Anisha: Yeah, and it was strange because a lot of the dreams I was having weren’t always necessarily to do with a car accident … they could be something else bad happening.
Lauren: Right, something else catastrophic.
Anisha: Yeah, absolutely. It was very strange for me, because I’d never experienced anything like this before. And I’ve been through other … what you would class as … traumatic events, but had never actually experienced Post Traumatic Stress Disorder; this was the first time. So I went on to have some therapy. I had a couple of different types of therapy because I had two sessions with the same type of therapy and that didn’t really work for me. It helped me to manage some of the anxiety better, but it actually wasn’t getting rid of the symptoms or the triggers. So, I went on to have a different type of therapy, which hugely helped me.
Lauren: And do you mind telling us what kind of therapy that was?
Anisha: I had a cognitive behavioral therapy to begin with; I had two lots of this therapy, around two years apart. And again, what I found for me, personally, was that when my anxiety was triggered, there were techniques that then helped me to reduce that quicker. But I was still getting triggered. And we know that cognitive behavioral therapy can be really effective for Post Traumatic Stress Disorder, but it’s different for different people. And for me, personally, in this circumstance, it didn’t help me to address the actual triggers I was experiencing. And then I went on to have a therapy called EMDR.
Lauren: I was waiting for you to say that! I thought to myself, it must be EMDR — because we did an episode on that quite a while ago. It’s just a wonderful therapy, especially for PTSD.
Anisha: Absolutely. EMDR stands for Eye Movement Desensitization and Reprocessing. The way that it really helps is, that you go back into the memory … there are different ways the therapist may do this … some may use their finger, some may use a light. Essentially, you have to follow it from left to right. And the reason that’s done is because it’s about engaging both sides of the brain. Because when we have memories, our brain processes those memories. It’s essentially like we have a filing system — so everything gets filed; you process it and it gets filed accordingly. And then you can recall the memories when you want to — the happy memories or even difficult memories. You can recall them, but it won’t necessarily trigger things.
Unfortunately, with Post Traumatic Stress Disorder, very often what happens is the memory hasn’t been processed correctly. It’s almost like it’s stuck. So that therapy is around reprocessing that memory.
I went into it hopeful, but also with a little element of cynicism, as well. Because I didn’t really know a huge amount about it; I’d done a bit of research. But for me, it was life-changing. It really was. I started that therapy four years after the accident. That’s how long I’d been living with my symptoms. And I didn’t believe that that was how it had to be. I didn’t believe that that was going to be how my life had to be forever more. I believed there was something out there. I just didn’t know what it was. Or I didn’t know what would work for me. So I was hugely thankful that it made a huge difference for me. But it was tough. I spent a good four years living with symptoms — flashbacks, triggers, and huge amounts of anxiety. I also had depression as well. I remember literally just being in a complete black hole and just not knowing what the way out was. And there were times when I genuinely thought there isn’t a way out of this. I can’t see how anything is going to get better. And that was really tough. It was tough for me to feel that way. Particularly because I suppose my philosophy in life had always been … there’s always a way, there’s always hope.
And for the first time in my life, I truly felt that there wasn’t [hope]. That was a really scary place for me.
Lauren: And this also ended up turning your entire career around, too, for the better. You were on one career path, and then this happened. And now you’re working in mental health because of it.
Anisha: I am. Yeah, everything changed for me — my priorities, what made me feel happy, what I felt was worthwhile. And I suppose what really gave me a feeling of self-worth and that feeling of … well, this has happened to me … it’s been pretty awful … Not just for me, but for my family, and the impact that had on my family.
Because with these conditions, they don’t just impact that one person, they impact everyone around you.
Even my friends could see it. But essentially I just kind of went, ‘Well, this has happened to me. There must be something that I can do with this. There must be something good that can come out of it — not just for me, but in a way that I can also support other people.’ I had been working in the corporate world; it was great. You get lots of perks, you work very hard. A good salary. And now, I work in mental health. I work with people who have mental health issues, but need support around their employment.
Because we know that employment is really key for people who have mental health issues, or a long-term illness or disability.
And I just went, ‘You know, I have to give it a go. I need to see if I can do this.’ And I love what I do. And not only do I love what I do, but I know that my experiences make me better at what I do. Because when I get people saying things to me, there’s a lot which I can really relate to. I can get it. But I’m now on the other side of it. But I know what it was like to be on that side. And I think, especially with something like mental health, once you’ve experienced it, it’s almost like your eyes have been opened in a way that they can never be closed again. And I think that’s really, really powerful. So, yes, I completely changed my career. What I also did, which ties into after the car accident and with my rehab and things … I used to play a lot of hockey, I was always really active, I played to a high level. I also love dancing. So I had done some hip hop, a bit of Bollywood … taken a bit of a break to play hockey again and had dabbled in a few things. And then after the accident, suddenly, as I said, overnight I couldn’t do anything. So I was having rehab and things, but being in the gym and having physio was really boring. I didn’t enjoy that; having grown up playing hockey, I missed being with a team and having the community. So I started going to these sort-of dance fitness classes. And I went to some Zumba classes — and just completely fell in love with it. Because it was, like, ‘This is great. I love music, I can do a bit of dancing.’ It’s not a dance class. Previously I’d been going to dance classes where it’s all about learning the right technique; you’re learning specific routines; it’s about getting it right. This wasn’t about any of that. It was about … come along, enjoy the music, have a bit of boogie, do whatever you can. And I used that as part of my rehab because it was like, ‘Well, you know, I’ve got neck injuries. I’ve got back injuries.’ I had very much a lack of flexibility, obviously from the injuries. So I was, like, ‘Okay, I can do what I can do, but it’s not affecting anyone else. It’s not affecting my hockey team. It’s not affecting performance.’ And I met some amazing people through that who have become lifelong friends now.
And that was a really big step for me, to kind of get back into the social interaction and community.
Particularly when I had such a low mood, I didn’t want to go anywhere, I didn’t want to see anyone. But at the same time, I also had a lot of anxiety. So getting in the car to go somewhere was really difficult. But that connection, which we know is so important when you’re going through these things … that’s where it came from. I thought, ‘This is something which is really, really valuable. I want to provide this space for other people.’ But I also wanted to encourage people who have long-term conditions like myself, or who have disabilities, to be able to come along and do exactly what any other person is doing in a kind of regular dance class. But all to be able to do it under one roof, without a segregation of: this is class for people with disabilities. This isn’t a dance class for people who are able-bodied. I wanted to bring everyone under one roof. And that’s what I’ve done.
Lauren: You’ve turned all of these negatives into all of these positives. It’s such an excellent lesson in turning lemons into lemonade!
Anisha: Yeah. I just think, it’s about finding a way. We have to find a way.
Because, so often, life with a chronic illness or disability, whether you’ve got mental health issues … is difficult enough as it is. So what can we do to actually make life better?
When my students come through the door, whether they’re walking through the door, whether they’re walking through the door with a walker or a walking stick, whether they’re wheeling through the door in their wheelchair … once they get through that door, that’s it. We’re all there to dance. We don’t see chairs, we don’t see sticks, we don’t see able-bodied, we don’t see disabled. Nothing. We’re just all people there who love dancing, who love music. We laugh so much!
Lauren: Those classes, what you post … they look like the most fun! Just totally inclusive. And emotionally inclusive, as well as physically … like, it’s a safe space.
And that’s the thing, it is a safe space. And I think what’s been really key about these classes is, we’ve created a community where we can be open and honest with each other.
So, for some of my students, they’ve never really had contact with people who have, for example, a disability or are a wheelchair user. And it’s actually opened up a dialogue about that, which is great because, where else can we ask questions? Where else can we get this knowledge, get this understanding? Because, so often people are worried about offending or saying the wrong thing. And we joke about things. With some of my students, I’m like, “Okay, I’m really tired now. Can I get a ride on the back of your wheelchair?” And we joke about stuff like that there! We have created that safe space. And it’s also a safe space for me as well, which is really important. As an instructor, it’s my job to give energy, to be happy, to be joyful. Well, when you’re experiencing depression … or when I’m having a flare-up of my colitis, and I’ve been to the toilet 12 times in a day, and I’m losing blood, I can’t keep any food in, and I’m completely exhausted … and I’m still turning up for that class … it’s not just because, yes, exercise is important. We know that’s beneficial. But it’s also so I can be with people who get it. And I don’t have to put this front on. The other week in class, I told them; I said, “Guys, I’m really struggling right now. I’m in the middle of a flare-up. I don’t feel great. I can’t do lots of shaking and shimmying today, because that’s going to be a disaster.” And the kindness and the care and compassion that they showed me … I felt so humbled by it.
Lauren: You’ve created your own community.
Anisha: We have.
I feel privileged to be their instructor, to be their teacher.
I really do, because I have met some amazing people, wonderful people. When you look at us, we’re such an odd bunch. If you threw us all together, you’d say, ‘How did that lot get together?!’
Lauren: They’re often the best ones, though! The ones that seem to be an odd match.
Anisha: Completely! And yet, it just works! We’ve been to parties together, we have Christmas dinner together.
Lauren: You really have a social group because of it.
Anisha: We do!
Lauren: And what’s beautiful is that you’re advocating for other people, and also for yourself, in this setting. Have you found that you needed advocates along the way to finding your way to health, as well? Did you ever rely upon anyone in your family, or friends, with doctors’ appointments?
Anisha: Definitely! Certainly my family. Obviously my parents, my sisters. As some of your listeners will know if they’ve listened to Trishna’s podcast, I have two sisters, both of whom have multiple sclerosis. There’s all three of us who have somehow had to navigate the healthcare system. So as a family, that has been something I think that we’ve all learned together, kind of along the way … how to navigate the healthcare system. I’m also very lucky that I have quite a few friends, good friends who are doctors, or who work in the healthcare system. So that’s been really helpful.
But I think, as well, it’s also a choice as to how much interest you want to take and how much knowledge, and how active you want to be in your care.
I do my own research. I see what’s out there, I see what other people are saying, what are their experiences. I read guidelines when they come through … all that kind of stuff. Because for me at the end of the day, this is my body.
Lauren: That’s really the through line with you and Trishna — that you’ve both become students of your own advocacy. So even though you’ve relied on your family and friends, you’ve also turned yourself into educated patients, and then are sharing that with others, as well. Which is just amazing. It’s something in the way your parents raised you guys! It goes to them. Thanks, Mum and Dad!
Anisha: You know, it really is. And I think it comes down to, the way that we see it … knowledge is power. And it’s not actually just power. It’s about empowering yourself, empowering others. I think that’s what’s really key, because, again, I’m very lucky that now the decisions I make with my healthcare team are joint decisions. It’s not just a case of a doctor saying to me, “You do this,” and I just blindly follow.
Lauren: You’re a participant in your care.
Anisha: And that has changed over time. So, when I think back to 2008, that wasn’t the case.
Lauren: Of course, you didn’t know.
Anisha: Well, exactly. And it was the same in terms of my mental health issues. Again, it was, “Okay, yeah, I’ll do this,” and, ‘Okay, well, that hasn’t worked. I’ll just try it again.’ Because that’s what I was told to do. And again, even then that took time to understand and time to research, because it’s something completely different.
Lauren: Yeah. I think also with something like EMDR in particular, people hear about it and they think, ‘So you’re telling me that this is going to cure me, by moving my eyes back and forth?’ Unless you understand the science of it, you kind of go, ‘What are you talking about?!’ But when you understand — as you have so beautifully explained the connection between both sides of the brain, and how you’re really reprogramming the way in which you process these traumas — it’s a breakthrough for a lot of people for that reason. But of course, the first time you hear about it, you’re, like, “Ah-ha, whatever … “
Anisha: And actually you said that really nicely. It’s a breakthrough. It really actually was for me, because when the therapy was explained to me — how it works and why it works, and why I’m getting the symptoms is because the memory is stuck — that for me was a breakthrough in that, after four years …
The reason I was experiencing these symptoms wasn’t my fault. It wasn’t a deficit in my personality.
It wasn’t because I wasn’t trying at my therapy. Even my therapist said to me, “God, you work so hard at your therapy. I’ve never known anyone to work so hard.” And I was, like, “Because I want to get better.” And now I was four years down the line, and I was not better. And I’m thinking, ‘Well, it’s got to be because I’m not doing it right, or I’m not good enough, or there’s something wrong with me.’ And actually, that was a huge breakthrough, when it was explained to me, “Well, actually, this is why you’re experiencing these symptoms. And this is why your therapy so far actually hasn’t changed what triggers you.” I walked away and again, I remember crying because I just thought, ‘It’s not my fault.’ I had spent those years blaming myself for what I was experiencing.
Lauren: And I think once you remove that guilt, you’re also able to participate in your healing in a new way, aren’t you? You’re able to really go: ‘Okay, I don’t have to take responsibility for getting sick. But I can take responsibility for healing.’ And it gives you more permission to do that more actively.
Anisha: Yes. And I think for me, that was really key. To be able to have faith in the process of, ‘Okay, this is what my brain needs to do. I need to go through this and see what happens. But whatever happens, whether it works or it doesn’t, it’s not my fault.’ And that was actually really, I think, key for me in terms of actually putting less pressure on myself. I think I’d been putting so much pressure on myself because it had affected everything in my life.
Lauren: Well, you wanted to achieve. Clearly you’re an achiever, so you really wanted to do well at this, too. And it’s sort of releasing that need to be so perfect about it.
Anisha: Yes. And I think that’s one of the things, when we’re so hard on ourselves. It came down to: I just wanted to get better. I didn’t want to have to live my life that way anymore. And the way I was living my life — with constant anxiety, with fluctuating moods, with these triggers — that became my new normal. I literally couldn’t remember what it was like before my accident and I started experiencing these things. I couldn’t remember what it felt like. I could think back to things, but I couldn’t remember those feelings anymore. And I was completely lost in it.
And I think I’m able to talk about it very openly now because I’ve come through it; because I’ve come to accept what I went through.
There was a period even after I went through therapy, when I knew I wasn’t really ready to talk about it. And I knew that that was okay. But I had to go through that process of — almost — grief and acceptance, and everything that actually went with it, to be able to say … I have come out the other side. Yes, I still experience anxiety … or yes, I still have periods of low mood. But I know they will pass. And I know it won’t be as bad as what it was during that time. And even if it does, there is help there.
Lauren: Well, it sounds like you also really embraced community as part of your healing, too, through your Zumba teaching and your journey to finding those classes. So key to defeating depression, anxiety, PTSD, all these forms of mental illness — is not isolating oneself, either. And you made a conscious effort to stay out of isolation, which has obviously helped you, as well.
Anisha: Yeah. And I think that was probably one of the biggest reasons why I did it as well, because I did become isolated. It’s really hard when, like I said, you have depression … where you have no motivation, you’re exhausted, you don’t want to see anyone. And I literally remember feeling like I wanted to close my bedroom door and shut the whole world out. That’s how I felt. But at the same time, also that feeling of … but I really want to see my friends. But also feeling that guilt around … if I see my friends, am I just going to make them more miserable? Because I can’t be happy right now. I’m finding it really hard. And then you put on that front of, “Oh, I’m okay. Let’s have some fun!” Even though you’re not feeling it inside. That takes an awful lot of energy. And then you think, well, is it worth it? Am I better off just shutting the door and not putting myself through that? And that’s really hard, because that’s a constant battle that very often people with depression have.
And actually what my classes forced me to do was, no matter how I’m feeling, I have to be there. Because if I’m not there, there’s no one to teach them. Having that responsibility, I think for me, was really key — because it made me do it, even if I didn’t want to.
And yes, it was exhausting. You do put on that front … ‘I don’t want to turn up to my class and I’m bawling my eyes out.’ But that was really key. And that’s what I say to my students as well … “This is your safe space. Even if this is the only hour you get in a week where you’re not a husband or a wife or a mum or a dad or a carer or … whatever your own issues are. This is your time just to be free.” And I have had students come to me and talk to me about personal issues. Whether it’s mental health, whether it’s health issues. Because, again, that space has been created to allow them to do that. And I think that is what is really key.
Lauren: Speaking of sharing and exhaustion and everything, though, how are you balancing the demands of work and life — with ulcerative colitis? And with your teaching, which you do in addition to your full-time work? What’s a typical day like? Say you’re having a flare-up … how are you managing the day?
Anisha: Yeah, it’s really tough.
And I think something I’ve realized is that, even when I feel like I’m at my lowest and I’m exhausted, and I feel like I’m actually maybe I’m at my weakest … that’s actually when I’m at my strongest. Because I’m still going. And when I say I’m still going, I’m not saying that I’m just doing whatever I need to do. I mean, I haven’t given up.
Lauren: Yeah. The key has been your attitude in that way.
Anisha: Yeah. And I’ve realized I do have a huge amount of resilience. That was completely knocked out of me after the accident. When I look back, I realize, cumulatively being diagnosed with ulcerative colitis … and in the same year that I started experiencing my symptoms, Trishna, my first sister, was diagnosed with multiple sclerosis … I was made redundant from my job; I started a new job. Trishna started her first lot of medications, so she had a huge amount of side-effects. I was still trying to manage my health, but wasn’t really taking care of myself. Then over the years, other bits and pieces happened. So I think, cumulatively, there were a lot of things that happened where I realized my resilience … I had used a lot of it up. And it’s taken a long time to build it back up. But coming back to your original question around managing a day … it’s really hard, it’s tough. I do get home and I’m exhausted. But also, it’s that balance of — what do I get? So, you know, work is really important for independent self-worth, financial reasons — that’s really important. Having reasonable adjustments is key. So, for example, in the UK, we have the Equality Act, which is essentially protective legislation against discrimination — against multiple characteristics, one of which is disability. So the definition of disability in the law is slightly different to probably what most people would consider disability to be out on the street. My condition, for example, and how it affects me, would be covered under the Equality Act. So, an employer considering reasonable adjustment … for example, that could be a change to my start time and finish time; if I’m having a flare-up, could I come into work slightly later so I’m not having to travel during rush hour.
Lauren: That comes up quite often when it comes to accommodation, yeah.
Anisha: Yeah. Reducing the amount of time where I don’t have access to a toilet. More flexible working, to be able to work from home. And so I think that’s a really key element for many people with chronic illness or disability, raising “adjustments” with their employer. Again, practical things … so, for example, when I’m having a flare-up, how I manage my meals is very different. Normally I’ll eat three meals a day; I’ll eat whatever I want generally of things that I know that for me personally don’t agree with me. When I’m having a flare-up, I tend to have to reduce the amount of meat I’m eating. I change what I eat, as well. I make sure that certain things I have are high-calorie to give me energy for dance class. If I can between work and my class, I’ll try to power down with maybe 10, 15 minutes — even if it’s not sleeping, just allowing the body to completely relax, calm down; take a bit of meditation time. Even if it’s not meditation, sometimes I listen to music; sometimes I actually just need complete silence to allow that kind of peace in my body. Because I think, for me, I tend to get through a lot on adrenaline. When I’m doing my day, I can get through on adrenaline and then it hits me. A lot of people don’t actually see the consequences of it. I get home and I literally collapse. My body then screams at me and says: “No more! No more!”
Lauren: Are you okay living like that, though? Are you happy coming home and collapsing every day?
Anisha: (laughs) Some days, yes. On the days when I teach my classes, with my current work and the days that I teach, I’m aware that that’s what happens. And it’s tough. I find those days really tough. But for me, what I get from doing these classes, being part of that community, is so much more.
Lauren: It’s so much physical exhaustion but you get the payback.
Anisha: Absolutely. And what I try to do, for example is … my classes are mainly at the beginning of the week, so then what I try to do is make sure that towards the end of the week, I have my evenings free. So I can come home, I can rest, I can watch a bit of TV or Netflix or whatever.
It’s actually taken quite a long time for me to work out how to pace myself.
Because what was happening was, on a good day, I would try and get everything done — and then I would completely crash. So I was constantly having these peaks and troughs. Every now and then that could still happen. But I think I’ve had to slowly find out what’s my new normal. And what works for me, and how can I manage these things. Some weeks, it all works to plan and it’s great. Other weeks, it doesn’t because also with these conditions, sometimes you wake up and you just never know how you’re going to feel. I haven’t always suffered with fatigue with my colitis. That’s something that I’ve actually only suffered with probably for around three years, even though I’ve had colitis for 11. That, for me, was actually a very new symptom that suddenly I was having to navigate and understand and find my way around. So it’s been through experimentation that I’ve had to find what works for me. And as I said, some weeks it’s great and it works, and other weeks, it just doesn’t.
Lauren: You’re constantly learning from it, though, it sounds like.
Anisha: Yeah. And sometimes you just never know, so you have to make a decision: Do I go out, or do I not go out? You have to balance that out and make a decision — and at that point in time, it might be the right decision or might be the wrong decision. Next week, you could make exactly the same decision — and that week it might be the right decision, the next week it might be the wrong decision. When you live with these conditions, there is a constant unknown. You just don’t ever really know. And you kind of have to get used to living with that uncertainty — which, in itself, is a huge thing to get your head around. But what I don’t want is for my condition to prevent me from doing things. I might have to find another way to do it. For example, I went traveling in South America for five months. I thought, ‘Okay, what if I have a flare-up while I’m out there? What are the things that I need to do?’ I was carrying five months’ worth of medication with me. In South America, the number of times I was stopped and checked and searched … they were looking at all my medications, and all those kinds of things. But I just went: ‘Well, just because I’ve got this condition doesn’t mean I shouldn’t do it.’ There were things that I needed to put in place. And I had to find other ways to do certain things. But I was, like, ‘No, I’m going to do it.’
And I think that’s what you learn when you have any one of these conditions. It doesn’t have to stop you. Sometimes, it’s just about finding a different way.
Anisha: And that to me is, I think, a kind of a life lesson.
Lauren: It really is. Anisha, we’ve learned so much from you today and you’ve got such wonderful advice for people in the chronic illness community, be they on the mental health spectrum, or physical health, or otherwise. Can you give us your Top Three Tips for someone who may be entering this chronic, invisible illness world, who feels they may have something off, or are dealing with mental health or physical health issues? What would you recommend for these people?
Anisha: I think, first of all — would be to make sure you have a support network in place. I think that’s really key. So, family and friends. I wouldn’t have gotten through what I’ve gotten through if it wasn’t for my family and friends. They’ve been a huge support network for me, and they continue to be as well. You know, having that understanding, for me, is really important.
I don’t need people to make things better for me or to give me sympathy … just understand.
And I think that in itself, having a support network, can really make a difference. I think when you try to navigate and understand what’s going on. I would say the second thing is: Do your research. Beware of Dr. Google. That is important to say. Do your research, but make sure that it’s from reputable sources. So, reputable websites; speak to healthcare professionals; find out if there are charities specializing in your condition.
Lauren: Yeah. That’s a great way to find reputable sources of information.
Because the more we know, as I said before, the more control we have around our own pathway … we can engage in our healthcare rather than being at the mercy of [it].
So, doing your research, taking an interest, is really important — but do make sure it’s from reputable places. I would say the third thing is: Keep doing the things that you love. Try not to lose the person that you were. Yes, life may change. But you’re still who you are; you may be a different version. Although we’re not playing hockey anymore, I still love going to watch my dad play hockey, for example. Or going to watch matches. I loved dancing before my colitis, before my accident. I still love dancing, but I might have to be doing it in a different way. I still love eating cake and I love eating ice cream! I may not be able to eat the volumes any more, but I still do that. Those things are still important to me. So, hang on to those things. You might have to find different ways of doing whatever it is that you love doing. But keep doing those, because quite often they’re the first things to go when we’re not well or we’re struggling, whether it’s mental or physical health. But keep doing that, because that will still give you so much. And also help you to not lose who you once were. We’re always evolving, but the good things you can keep with you.
Lauren: Speaking of hanging on to the good things, what are your Top Three Things that give you total joy — be they cheats like ice cream and cake, or guilty pleasures or secret indulgences or even comfort activities? Like, if you’re having a flare-up … What are your Top Three joyful things in your life that you turn to?
Anisha: Okay, so anyone who knows me — my friends and family — will know that I love ice cream. I really love ice cream! So one of the best things when I was in Brazil … they have restaurants and also dessert parlors, ice cream parlors, where you don’t actually have to pay per scoop, like per flavor; you pay by weight. So you can go in, have all the flavors under the sun, and you just pay for the weight of what it comes to. So I remember I went into one parlor in Brazil and I think I had 10 flavors! I didn’t have a scoop of each; it was a small amount of each. But I was, like, “This is brilliant. We need to do this in the UK. This should be worldwide!” Having to be restricted, there’s just so many flavors I want to try! So ice cream for me in terms of food; I love it. So that, for me, would be one of my top joys. And what would my others be? I think dancing has to be be up there — whether that’s dancing in the living room, in my bedroom where the neighbors are wondering what on earth I’m doing, dancing around my bedroom, like a lunatic. Or with my friends, with my family.
Lauren: You’re a dancing family, for sure.
Anisha: Yeah. And I think that’s the thing, the music and the movement.
Lauren: And community.
Anisha: Yeah, and the community as well. One of the things I love when we go to family occasions and I’m on the dance floor, and my mum and dad are there, too. Or my aunts and uncles. My mum comes to my dance classes so I get to dance with her every week.
Anisha: And you know, it’s so funny because whenever there’s a photo with my mum on there, everyone is always commenting. They don’t say, “You look great.” They’re, like, “Your mum is brilliant!” And we’re, like, “Yeah, okay, we know she is!” So I think dancing has to be up there. It just makes me feel alive; it makes me feel music and it gives me an opportunity to lose myself in that moment. Especially when you’re in pain or when your mood is really low, music is so powerful. I don’t know what I would do without music and being able to dance. So that would be my number two … in no particular order, by the way. And my number three? What would my number three be? The problem is there’s so many, it’s really hard to pick.
Lauren: Oh, well, that’s a good problem!
Anisha: Yeah, definitely. Obviously friends and family have to be up there, of course. I mean, that goes without saying. But one thing for me is, I love traveling. And it’s not about traveling to just see sites. For me, traveling is that opportunity to meet new people and have new experiences, to get to understand different things in the world. And I’ve been really lucky. I have done traveling. I spent time in South America; that was great because it gave me an opportunity to also meet people with other chronic illness. To understand: what is it like living in other countries with the healthcare systems, with disability, and the legal elements … what is their protection, all that kind of stuff. I’ve also visited Kenya and India and Europe, and parts of Asia. I just think there’s so much diversity and richness in the world that I always love meeting new people and experiencing different things. And that can be pretty tough when I’m having a colitis flare; that can be really hard. But that, for me, makes me feel alive when I’m in a new place. I don’t know what’s going on, I don’t know where I’m going, I’ve turned up with a backpack or a suitcase — and who knows what the experiences are going to hold and who I’m going to meet. I’ve made some amazing friends that way, who I’ve met throughout the world, who I’m still in touch with. And that, for me, just shows that there is so much goodness in the world; there are so many good people. Traveling is definitely up there for me. My friends are always saying, “Oh, when are going to plan your next trip?” And I’m like, “When I have more money!”
Lauren: So there are ways to plan trips. Because travel is so full of variables for people like us who need certain things, certain comforts. There are ways to accommodate for your needs and anticipate potential hiccups in the road. So I’m sure when you’re traveling, you’re aware of those things, too. Like, okay, I’ve got to bring certain meal replacement things if I can’t get food I need. Or, I need to make sure I prioritize rest on the road. So there are ways to do that, for sure.
Anisha: Definitely. And I think that is the key thing: Whatever you want to do, find a way to do it. It may not be how you imagined it, with whatever it is you might have had or you’ve gone through. But there’s still the possibility. And I suppose that’s what traveling is for me: It’s all those possibilities. Because, actually, we don’t know. And when it comes to travel, that, for me, is really exciting. Other than when I don’t know where the toilet is, and I’m in the middle of having a flare-up; that I need to know, that’s really important!
Lauren: But you were just telling me before the interview … that you’re going on a train because you’re traveling, so when you get on the train, the first thing you’re going to do is clock where the toilets are in relation to where you’re sitting.
Lauren: So it’s just an awareness factor.
Anisha: Definitely. And that priority will be slightly different, depending on if I’m having a flare. Absolutely. That will be the first thing I’m going to make sure I know. If I’m not in a flare, I might settle down and sort my snacks out, and all that kind of thing. And then eventually get around to it. Whereas, if I’m in a flare, that has to be the top priority. It is very much just around adapting to what you need. I love travel, so if anyone out there wants to invite me to speak somewhere or anything like that, which is exotic and I get to travel, I’ll be more than happy to have a conversation!
Lauren: And where can listeners find you so that they can get in touch with you?
Anisha: You’ll find me on Instagram, Facebook, Twitter. My handle is @ZumbaWithAnisha. You can find me obviously, on any of those channels, and then also through the podcast as well. So if anyone wants to connect or you want to see videos of us dancing. Or if you’re in the UK, if anyone’s visiting in the UK and thinks they want to swing by a class, the more the merrier; everyone is welcome. It’s just about getting everyone involved.
Lauren: That’s wonderful. Well, Anisha, it’s been such a pleasure speaking with you again. And I look forward to meeting you guys when I’m in the UK, and hopefully coming to a class! Thank you so much for taking the time and sharing your story with us.
Anisha: It’s been my pleasure, and thank you for having me!