Chronic illness with Tasha Sorhaindo, Chronically Marvellous 

Speaker Key:

CB     Chantal Boyle

TS      Tasha Sorhaindo

00:00:20

CB      

So, today, the Sunflower Conversations is in Hampton. We have come to visit Tasha Sorhaindo and her charity, Chronically Marvellous, and Tasha and her disabilities that she lives with. So, Tasha is the founder of the charity, but she's also, last year, I think it was last year, the winner of a local community award. 

CB      

So, we'll find out what are the attributes, really, that contributed to you being nominated and winning this award. So, charities really are the caring arm of society and our communities, they support individuals, they support families. But I want to know, who are the people behind these charities? 

We know very large charities, Oxfam, well, there must have been one individual behind that who's created that, so I think it would be really great to understand your motivations and what the aims and the objectives of what Chronically Marvellous are. And just to find out a little bit about your journey, really, and why you set it up and who it's supporting. So thank you so much for inviting me and the community to your charity today.

00:01:42

TS      

Thank you.

CB      

So, one of the things we need to obviously, point out is that Tasha has a lot of health conditions which are chronic. Therefore, she is experiencing brain fog. So she's got notes, I have got my notes here as well. So, Tasha has got her notes, but there might be some pauses between answers, and that's just the reality of living with chronic health conditions and pain and everything else which goes along with it. 

So, let's start off with our first question, which is I know that you you're wearing the Sunflower, and two of your children also wear the Sunflower, so you're talking about lived experience. And you obviously value the purposefulness of the Sunflower, but can you share with us today what disabilities do you have?

TS      

Okay, so, I do have quite a few. I would say the main ones, I have systemic lupus, which is an autoimmune disease that basically attacks the healthy cells, tissues, and organs, skin, literally any part of your body from head to toe. And it's quite brutal, it's debilitating, and the majority of my days are actually spent in bed. 

I also have dilated cardiomyopathy, which led to heart failure, and so it means that my heart doesn't pump very well, and I get very breathless, short of breath. And on a good day, I could probably take maybe about 20 steps or something before having to stop and sit down, or I might need some oxygen. 

00:03:28

In the warmer weather is quite difficult, because I'm on a fluid restriction of 1.5 litres a day. So it's not a lot to drink. So, yes, I do manage just by having ice cubes throughout the day, or ice lollies, just to keep myself hydrated.

CB      

My goodness. Fluid restriction.

TS      

Yes, otherwise my heart gets overloaded, and I'll end up with really swollen ankles, or around my tummy. And then, obviously, that's not very good, because then they’ll have to drain it out. And it's more pressure on the heart as well, has to work harder.

CB      

Okay. And then, there are some neurodiversities as well, with you and the family, and your daughter?

TS      

Yes, I was diagnosed with autism when I was 19 years old. I didn't know much about it then, as I do now. I didn't really know what it was and what to expect. I always just knew that I didn't really fit in. And for years, I don't want to call them friends now but I had people around me who just thought that I was odd or weird and didn't really fit in, and didn't behave in a way where they were expecting me to behave. So, yes.

00:04:40

Since then, my children have been diagnosed. My oldest daughter is also autistic, and my youngest as well, and I've learned so much about it, and through them as well. And also, as well, to accept who I am. And it's okay. And I don't have to be anybody else, just because someone doesn't get it or doesn't get why I get overwhelmed, or why I behave a certain way. And I can be myself now. 

But prior to my daughters being diagnosed, I didn't feel comfortable letting anyone know or saying this is what I have, because I felt ashamed and embarrassed and thought that no one would actually want to be around me, because I have this thing called autism, and it means if you have it, you're weird and strange and different.

CB      

Well, there were, presumably, many people that you knew of your age group that were autistic, right? 

TS      

No.

CB      

Because the diagnosis and the awareness through a lot of the good work that National Autistic Society have done has really increased our education around what autism is, hasn't it? 

TS      

Yes.

CB      

So I can totally understand why you felt very isolated in that diagnosis. 

TS      

I did, yes.

00:05:52 

CB      

And your daughter's experience, presumably, is different to yours?

TS      

Yes, very much different. Obviously, my youngest one, it's a different story. I knew from when she was six months old. I told the GPs, I think my daughter is autistic, and they kind of said, she's way too young, but the eye contact wasn't there. And just going outside, she’d have her hands over our ears and cover our eyes. If it was bright outside, or if someone was talking she'd totally put herself just somewhere different. And I recognised the signs from my eldest daughter. 

And I think I've always told my daughter, just embrace yourself and never change who you are. Which I wish someone had said to me all those years ago. So, through them being diagnosed, actually, it’s made me just know that it's okay to be me.

CB      

Yes. And your daughter, Jayden, what health conditions does she have?

TS      

Jayden has long QT wave syndrome of the heart. It causes, basically, dangerous arrhythmias. And, sorry, all the children have the gene, so it’s a tough one. I find it really difficult to talk about the kids. Sorry. 

CB      

That’s fine.

TS      

If it’s myself, I can speak about it, but it's hard, because when I first got diagnosed, I was in a really tough place in 2021. I was literally told I had a few weeks to live, and then I got that phone call to say, oh, we've got the results back for your children, they have the gene, and we need to get them on beta blockers right away. So I think for the first couple of years, I still do it occasionally, but not so much, I will go to the children and place my hand on their heart just to make sure they're still breathing, especially if they're quiet or there's a little pause. 

00:07:49 

I get severe anxiety, and I just think, okay, what's going on? Or I'll wake them up. Because you have to be careful, you can't startle. A loud noise, can make them have a dangerous arrhythmia, which can cause a cardiac arrest. Or it could just be getting too excited or doing strenuous activities. So they have to [overtalking]…

CB      

So every day is a stressful day as a mum managing and monitoring. 

TS      

It is, yes.

CB      

And obviously, as the children get older, then you're not with them all the time, so, yes, then it's like that helplessness in that sense.

TS      

Yes, definitely. 

CB      

So what are some of the challenges and barriers that you experience with your lupus, your heart condition, your neurodiversity? And I guess that's going to lead us into why you created charity.

TS      

Sure. I will say that because they're invisible and you can't see it, there's been a lot of judgement from people that don't really understand it. For instance, when I was wheelchair-bound quite a lot for a number of years, I would get people looking at me and saying, but I saw her walking yesterday, or I saw her with a walking frame. Why is she now in a wheelchair, or why she now using a stick? I think she's faking it.

00:09:02

I think, for me, the hardest part was my family. When I've spoken to a relative and said I'm quite unwell, and they'll say, well, you were fine yesterday, what's wrong with you today, now? It’s always something going on with you. And they just don't understand what it's like. Every day is different. It doesn't mean that there's great days, but you always have a baseline, and you know that if something is going on more, it's usually a flare-up of all your symptoms just going crazy. 

Say, for instance, if I've pushed myself too much in one day, I know that the next few days are going to be tough for me, and it may send me in a flare-up, and then I may be bedbound for weeks or months at a time, just because I went out and did that thing. Well, that thing called living life.

CB      

Well, that’s it. And prior to being diagnosed, it's just a daily activity, so that could be something as far as just doing the shopping in the supermarket, presumably?

TS      

Yes, things that we take for granted, like going to the supermarket. Coming down the stairs to open a door for the postman and just grabbing the mail. Just doing up my buttons, because I have really bad arthritis. Just everyday things that I guess I didn't see the beauty in before I became unwell. Whereas now, I appreciate the little things so much more, and it means so much more to me right now.

00:10:30

CB      

And arthritis, is that linked to lupus in any way?

TS      

Yes, it is. Yes. So, I have arthritis and also osteoporosis as well, so I’m quite… Well, I have condition called, EDS, which is Ehlers-Danlos syndrome. So I get a lot of dislocations and fractures and things as well, and quite easily. I would say the biggest challenge for me, with all these conditions, obviously going from fit and healthy, running marathons and just, yes, being able to do what I want to do, it's learning to pace myself. 

I found that really, really challenging in the beginning. It was a little bit of denial as well, like, no, I can still do this, and if I do it, that means that I'm not so bad, and I'm going to do it because I can do it. And then pushing myself so much, and then crashing, and then actually doing more harm and becoming more unwell, and then coming down with more diagnoses.

CB      

Because that's the opposite, isn't it? An athlete, and that's obviously where your brain was, that's the mentality you have to have, isn't it, you’ve got to keep on pushing to improve and get better and get faster and get stronger, get fitter. And this is a total switch.

TS      

Yes, it's a total switch from running, literally running, running, running, mini marathons, short marathons, to literally only being able to take a few steps a day. It's cruel. But I'm going to get to why Chronically Marvellous was born.

CB      

Yes, you are. So I was going to ask, just to get a little bit more into you, what does a day in the life of Tasha look like in terms of looking after your family and coping, managing the symptoms?

00:12:21

TS      

Okay, well, my time is spent in bed. I don't really leave my house much unless I have a medical appointment. So I do everything from bed, emails, calls, whatever needs doing. I'm just in bed, and I have a little desk that basically stands up, and I can just put my laptop on there. 

I love cooking, I haven't stopped cooking, and I have a special chair that I sit on in the kitchen so I'm at the right level of the counter. And I'll cook for the children. I'll do that in the morning, so I know that if I burn out or I do too much, then that's done, so I haven’t to worry about that. 

But it is difficult, obviously, having also children who are autistic as well, and having to get her ready for school and just everything else. Feeding, toileting, literally everything. So it's difficult. It's tough. I do have a carer that helps me out a huge amount, and also my older children, but they're not local to me, so that can be tough as well. 

A typical day would be waking up, I'm a total insomniac, I don't get much sleep at all. Sometimes it's due to pain, or it's just due to, I don't know a load of symptoms or things going on through my mind. Yes, so it’ll be to wake up, obviously, sort the children out, make sure they're ready for school, breakfast and things like that. 

And then, sorting myself out. Usually, by the time I've had a shower, I'm completely wiped out, and I need to have a little rest, recovery, for that as well, before I can get up and do anything else. And then, I’ll prepare dinner. Sometimes I batch cook so that it's already there, so we know what we're having for the next few days, because I don't know what the day is going to be like. And that's pretty much it. 

00:14:22 

I just go with the flow. But me, as mum, I wear several masks. I have masks for the children. And then, when they're at school, I can take it off and be in pain and have a cry and just be myself. But I tend to hide it from the younger ones a lot.

So they see me in the morning, I'm in agony, but I'm just like, morning, girls. come on, let's get ready. You will never know that I'm suffering or struggling so much. Never. And then, I see it a time, and it's like, okay, it's coming to three o’clock, pull yourself up, Tash. It's really tough and it’s really hard.

CB      

Showtime, in a sense.

TS      

Yes, showtime. Mask back on again. It's like, how was your day? How's it going? Right, okay, we've got this for dinner. Come on in the kitchen, let's talk about your day. Let's do this and do that. And it’s just…

CB      

Helping with homework.

TS      

Yes, helping with homework, sitting down. But I like sitting at the table with the children, because I found that we have a conversation. It's one of my highlights of the day, because we come together, then. After that, it's homework and they’re always in their bedroom. And I've got teenagers, so, yes, that's our little time together.

00:15:25

CB      

I think the dinner table is the thing that can hold a family together.

TS      

Yes, definitely. The kitchen. Growing up as well, for me, the kitchen was the place to be. It's where everyone is just happy. Music, cooking, and everyone's together.

CB      

You are listening to the Sunflower Conversations. Remember to hit subscribe. So, what made you decide to set up Chronically Marvellous?

TS      

Okay, to cut a long story short, I was very unwell in 2021, and I was told that, basically, if you're here in a few weeks, it's going to be a miracle. And I had a conversation with one of my GPs, and they're very good at my GP service, and basically I said, am I ever going to get better? Because I've gone through this whole thing where I've spent literally ten months in hospital, am I going to get better? 

And she explained to me, this medication is for that, and that's for that, and that's for that. Nothing here is going to make you better, it’s all to control your symptoms. And that was a wake-up call for me. That was when I thought, oh my god, I'm popping these pills every day, up to 30 pills a day, and I think to myself, okay, I'm taking this because it's going to get me better, because we think that medication helps us get better. And then, my bubble was completely popped. There was nothing on the list in all those medications that's going to make me better. It's just to relieve the symptoms. And everything that I have is progressive, so there's no getting better. 

00:16:58

So I re-evaluated things, and I thought to myself, well, you've always in a helping capacity, and you love helping people, and that's what I do best. I trained as a counsellor, I trained as a nurse. It's where my heart belongs, helping other people. So I thought, what actually is stopping me? It was always about, well, I need to get a bit better first, my health needs to be a bit more stable. Well, actually, it's not going to, and tomorrow's not promised. So what are you waiting for? What are you waiting for? This is your dream. This is what you want to do. Get it done.

CB      

Wow.

TS      

I literally just woke up one morning, and I said, JD, I've got an idea. She said, oh god, Mum, what is it? She said, Mum, you have a look in your eyes. What is it, mum, what idea have you got? And I said, I think I want to set the charity up now. And she was like, oh, the support group you were talking about? And I was like, yes. So it started with that, and then it just grew into something huge, overnight, literally.

CB      

Yes. Well, tell us, what are the services that you provide?

TS      

The services that we provide, obviously, the main one that's so needed right now due to waiting lists and everything, is the counselling services. So, we have counselling services with qualified counsellors who volunteer their time, actually, they're all volunteers. My entire team is a bunch of volunteers, the CEOs, the directors. No one gets paid. It's just purely because they believe in a mission, believe in my vision, and basically want to help me to basically deliver that. And that's so beautiful for me, you know? So, yes, it was just waking up that morning and just realising that now’s the time. It's now or never. 

00:18:41

So, besides the counselling services, we also do wheelchair, we give wheelchairs out, we give mobility scooters out. It's for people who are housebound and they have no way of getting out, or, like myself, too breathless or too much in pain and they can't get out of their home. 

Because one of the things I noticed myself, when I couldn't get out of the home, was that I developed some kind of social anxiety, because I hadn't been out for such a long time. It was like, okay, I'm scared to do this now. Am I going to be okay? And it was hard. 

So that's one of the things that I never want anyone to go through, to be stuck indoors and they can't get out just because they can't afford a wheelchair, or because they can't afford a mobility scooter. So that's my mission, to remove that barrier, and so people can socialise again and go to the shops, pick up their little one from school, or just be out in nature.

CB      

So it's a real lifeline, isn't it? 

TS      

Absolutely.

CB

And the counselling and actually the ability to be able to leave your home, you’re doing that with two hands, right, I’ve got you, come on.

00:19:45

TS      

Yes, literally, because it’s very isolating when you have a chronic illness, because friends don't call you anymore for invitations, you don't really get invited, because obviously, usually, nine out of ten times, it's I'm not feeling very well. So they stop calling in. 

CB      

Stop asking.

TS      

And it can be a very lonely journey, you know? So having a support group, we run support groups weekly as well, online and in-person. The majority of our stuff we try to keep online, because we know that people are so unwell and they can't just get out. So we run that every week, and it's a lovely group, and people come on every week, and it's open to carers as well. 

And sometimes I've gone on, I've jumped on a few times, just to see how it's going, and I've heard people say, that's what you've got, and I get it now. And it's like, yes, that's what I've been trying to say. So it's also raising awareness as well. And also, allowing people to be heard and seen without any judgement and knowing that that's their space. And they can literally talk about anything, how their day was, how their appointment was. And it's just a lovely set-up,

CB      

Yes, in a non-judgemental, safe environment. 

TS      

Yes, exactly.

00:20:56 

CB      

And so, is it just people from the local area, or you're online, so is it national? What’s your reach?

TS      

It's national, yes. We have a few from America that actually come. 

CB      

Do you?

TS      

Yes, the time difference is crazy. So I don't think, god, it must be like about five in the morning where they are. But they come every week and it's so lovely. Because, yes, the support group leaders as well, they're amazing as well. Again, volunteers, everyone’s volunteers, giving their time. And I don't think they realise how much I appreciate them. They always say to me Tasha’s so inspirational, but actually, I always think they are, because without them, without having that army beside me, I couldn't do the vision, I couldn't do what I want to do and what needs to be done. So I need a team behind me.

CB      

Absolutely. And I don't think you can ever undervalue what a team is, because you might think, oh, you're thinking about sports or whatever. But, no, it's not. If you get that concept of the team and it doesn't work, I'm going to relate it back to football, but if you really think about the most successful, PSG won the Champions League, there wasn't one player that won it. It has to be a team. 

TS      

Absolutely.

00:22:09 

CB      

And so, acknowledging the people who are with you and to do this, and obviously being guided by you and your relentlessness to support people. 

TS      

Yes, definitely.

CB      

You're wearing the Sunflower. 

TS      

I am.

CB

I mentioned at the beginning that you and your children wear it, so can you share with us how important you think the Sunflower is, and in what ways does it support you and your family?

TS      

Well, for me, I think the Sunflower is incredibly important, because it brings awareness and understanding to those living with non-visible conditions, like myself, my children, and a number of other people as well. I think that a lot of people can face daily challenges that aren't obviously immediately obvious. And just by wearing this Sunflower, it helps signal that someone may need extra time, support, or patience, without having to constantly explain their condition and repeatedly, go over things, which can be tiring. Additionally, some people struggle to explain themselves. 

So, for me and my children, it gives us peace of mind. I find that mostly in the busy supermarkets, busy places, public spaces, I think people treat you a little bit more kindness, because everybody knows what this is now. I haven't been anywhere where someone's not recognised it.

00:23:40

CB      

That's brilliant. That's great to hear the news.

TS      

So, yes, I will say that it helps you feel seen and supported as well. And also, again, like I said, it reduces the stress of having to justify a disability that others can't see. So, yes, I think that you wear it, there's a little bit more compassion, because they already know that you have a hidden disability. So you might get someone helping at the till and say, would you like some help to pack your bags? And it's nice that they don't just assume and start packing. We always get asked, would you like some help? And I'm like, yes, please. 

So it's lovely. And I've been to Tesco with my little one as well recently, and she wears the lanyard as well, the Sunflower lanyards, and we were given a box, and it basically had ear defenders, it had fidget toys, and a few other things as well, to make the shopping experience a little bit more pleasant and tolerable.

CB      

And is that a rental? You hand it in at the…?

TS      

You had it back when you finished, but it's just there, and you can ask for it. So that's like, if all supermarkets can adopt, that would be amazing. Because that made a huge difference.

CB      

Yes, I think we've all had that experience when we've been in the supermarket and seen a child really struggling with that environment. The National Autistic Society, I’m mentioning them again, a few years ago, they did a campaign called… Now, I've got brain fog, I can't remember what it was called. Too Much Information, that's it. 

00:25:16 

And with this project, they created a VR video, so you would put on headphones, and then you would hold a cuddly toy, and then you'd watch this film. So you were basically the child in the film, and the child goes into a shopping centre with his parent. And you're seeing the shopping centre through the eyes of the child who is autistic.

TS      

I’ve seen it, I know exactly what you're talking about.

CB      

You’ve seen it. And it actually can make you so overstimulated that you end up taking the headphones off, because it's so intense. So that was great. And that was a long time ago. So I'm really glad and delighted to know that Tesco are doing this, they've incorporating the Sunflower lanyard in that bag as well, aren’t they?

TS      

Yes, they are.

CB      

Because that really helps to get that access to just daily activity, something that's actually necessary.

TS      

Absolutely.

CB      

Not many people go to the supermarket for fun.

TS      

No, not at all. But yes, I remember watching that video, and I remember bawling my eyes out. You can literally hear everything, the photobooths flashing, the lights, and a little thing dropping on the floor, the smells of the perfume shop. And it was just too much. And sometimes people might look and think, oh god, that child out of order, and has no manners. And they have no idea. Perhaps, maybe that should be an advert on prime time TV. Might raise a lot of awareness.

00:26:52

CB      

Yes, definitely. Do you have any little pearls of wisdom for if you were to be able to go back in time to say to Tasha, young Tasha? What would your advice be, rather. I'm not actually going to say what the advice would be, because I'm not you, so I don't know. But what would your…?

TS      

Before I became unwell?

CB      

Yes, in terms of the road that you've had to go down. And I would say, it's not a road, it's a mountain you've had to climb and continue to climb. 

TS      

Yes.

CB      

And the feeling of isolation, the total worry about the chronic health condition. So you've got autism, which is not a chronic health condition, of course, but what I'm talking about is lupus and arthritis and your heart condition. This is presumably why the charity is set up. So if there's somebody who's starting on that health journey, in terms of being kind to yourself, what advice would you have?

00:27:55

TS      

I would say, listen to your body. If it's screaming at you and you're struggling, you need to rest. And resting actually isn't being lazy. It's needed for recovery, and also to enable you to have better days. Don't push yourself. Always listen to your body. That's where I went wrong, I think. 

And I would take that advice now and say, yes, just rest whenever you need it. And always hold on to hope. Never give up on hope. Because it doesn't matter how bleak things look, nothing stays the same. It can't stay the same forever. So, eventually, something has to give. And just hang in there.

CB      

Good, great advice. And finally, how can people reach you?

TS      

They can reach us through the website, which is www.chronicallymarvelous.org.uk. Reach out. We also do a lot of mindfulness walks in Kew Gardens as well, and we do mindfulness workshops and also pop-up cinemas as well.

CB

Amazing.

TS      

Yes, so there's a lot going on, which is great. And right now, I'm putting out in the universe that I would like a minibus, I would like to be able to collect people that can't actually leave their homes on their own, even if they have a wheelchair. So minibus.

CB      

Scoop them up and bring them.

TS      

Yes, pick everybody up, and then be able to bring them back home again, that’s something I’m really dreaming of right now, and working on.

00:29:30 

CB      

And you're on social media, aren't you? 

TS      

Yes.

CB      

You've got an Instagram account, and that's Chronically Marvellous as well. 

TS      

Yes, that’s right.

CB      

Well, Tasha, thank you. Thank you, I know that it was a big effort for you to get here today, and not be working from your bed.

TS      

It really was, yes.

CB      

And so, I just want to thank you for everything that you're doing.

TS      

Thank you.

CB      

And for sharing it with everybody, so that they can understand what it takes to set up a charity. Also, get an insight to what it's like to live with chronic illness. The 20 paces, that's hard. So, thanks very much.

TS      

Thank you very much.

CB      

Thanks for making me feel very welcome. 

TS      

Thank you, you’re welcome.

CB      

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and Hidden Disability Sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.

00:30:36