“I hated myself”: becoming chronically ill at 12

In today’s episode, I’m joined by one of my oldest and dearest friends, Natasha Misri.

Natasha was diagnosed with ME when she was 12, and we’ve talked a lot over the years about what being ill as a child looked like for us. About how it’s shaped us and the imprints it’s left on our personalities. We’ve also pondered a lot about what it must have been like for our parents to watch the person they love the most in the world suffer and not be able to do anything about it.

Being sick as a child is difficult to explain if you’ve never experienced it. You feel different. You are different. But you so desperately want to be the same as everyone else in your class.

It’s hard enough being a kid (especially a teenager) when you’re learning about the world and your place in it – but when you add to that a diagnosis (or a lack of one), constant hospital appointments, weeks and months of missed school, and friendships that feel like they’re balancing on a knife’s edge – it can, at times, feel like it’s too much for one child to take.

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Natasha Lipman:

Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman.

Natasha Misri:

I just hated myself. There’s oh, I’m going to get all … I really hated myself. My body kept failing me. And so I couldn’t do all the things that I so desperately wanted to do. I couldn’t be a part of friendship groups. I couldn’t go out. I couldn’t do anything. This thing, my body, which is supposed to get me from point A, point B, it’s supposed to be on my side. It just kept on failing.

Natasha Lipman:

That’s Natasha Misri. One of my oldest and dearest friends and my guest for today’s episode.

Natasha and I went to school together. We met when we were about 13 and then became friends sitting at the back of the lab and grumbling our way through GCSE physics classes.

Looking back, neither of us can quite remember how or why we clicked. We just did. We got each other, not because we went to the same school or because we didn’t particularly enjoy physics. Over time, it turned out that there was something deeper to our friendship.

Natasha was diagnosed with ME when she was 12. And we’ve talked a lot over the years about what being ill as a child looked like for us and how it shaped us and the imprints left on our personalities. We’ve also pondered a lot about what it must have been like for our parents to watch the person they love the most in the world suffer and not be able to do anything about it.

And that’s the theme of today’s show.

Being sick as a child is difficult to explain if you’ve never experienced it, you feel different. You are different, but you so desperately want to be the same as everyone else in your class. It’s hard enough being a kid, especially a teenager when you’re learning about the world and your place in it.

But when you add to that, a diagnosis or a lack of one, constant hospital appointments, weeks and months of missed school and friendships that feel like they’re balancing on a knife’s edge.It can at times feel like it’s too much for one child to take.

I went through school, living with undiagnosed Ehlers-Danlos syndrome. And whilst it was a challenge, my experience was still relatively normal compared to Natasha’s. So, I’m really pleased to have her on the podcast today.

In this incredibly personal and emotional episode, she shares her story and reflects on what it’s like getting sick when you’re so young and the impact it has had on everything from her education and her relationships to how she thinks about herself, even now. I started by asking her to think back to when she first felt ill with ME.

Natasha Misri:

I was 12 years old. I was probably off school for about a month before my mum or I realised that there was something more amiss. And then I think then we started having lots of doctor’s appointments to find out what was going on, lots of tests. I think the first initial thought was that it was glandular fever. And my mum told me today, which I hadn’t realised that there’s an actual test for glandular fever, because I was 12 years old. So, I wasn’t really aware of any of this. And it tested negative. So, they were trying to figure out what was wrong with me. And I think I was really lucky because we went into the senior school when I was about 11 years old. So, it was the year before. And I hadn’t changed school. And I think that was one of like my saving graces.

So, the school that we were at, I had been there since I was four years old. So, they knew my character. They knew who I was. So, they didn’t think for one second, this was me skiving, or trying to stay off school, or being unhappy. And I know really, really sadly that’s the case for so many people with ME when they get at a really young age.

And so I had all the school’s support like the educational staff. But it was still really, really tough trying to figure out what was going on with me. I think I was really lucky that I was 12. Because I kind of took everything in my stride. I was shielded from thinking about the bigger picture. And now that I look back over it, I know that for my mum, it was probably a tougher time for her than it was for me initially.

Natasha Lipman:

What kind of symptoms were you experiencing when you first got ill and how did that then develop into being able to get a name, to put to it?

Natasha Misri:

So, initially I had a really terrible stomach. And you and I have spoken about this. My stomach is my really weak area. So, I was in physics class and I had to rush out. I remember it was about three o’clock in the afternoon and I just had to rush out to go and be sick. And I went to the nurses’ office and was sick and she called up my mum, took me home. And then I had terrible diarrhea as my mum then recalled to every single doctor that we ever saw after that. She was like, she had, Natasha had the worst smelling diarrhea that I had ever smelled. And I would say inside, please stop, please stop, please stop. But yeah, that’s basically was like, my first symptom was being sick and terrible diarrhea. And then it just, that continued. And then it started to go into my whole body being in excruciating pain.

So, all my joints, it felt like my bones really hurt and I couldn’t get comfortable in bed. So, I would be lying down and then that would hurt. So, I lie on my other side and that would really hurt and then try and sit up that would really hurt. So, I just couldn’t ever get comfortable. I felt in so much pain being in my own skin. And then obviously you’re in so much pain and you can’t sleep. So, then I wasn’t sleeping. And as you and I both know we are bad sleepers and the knock on effect that has. And so I think those would be my main symptoms to begin with. It’s so hard to think about now because it’s been so, it was so, so long ago. But those were the main symptoms that I remember really standing out to me.

Natasha Lipman:

How long did it take for you to get a diagnosis of ME?

Natasha Misri:

I would say, this is really hard. I should have done more … I should have spoken to my mum more about this because she was the main one who was really fighting for everything. So, in my head, I remember going to Northwick Park Hospital and I was seeing the paediatrician because I was 12. And I remember, so if I was say in the October, I think, September, October I fell ill. So, it was in the beginning of year eight. I remember being there over sort of the wintertime going up to his office and being really, really cold. So, I think sort of like a couple of months. I do feel it was like a couple of months.

And I also know that the doctor did say to my mum when I had like left the room, how is she mentally? Is she happy? And my mum to her credit just shut that down straight away and said, “No, she is really happy.” Which I was. I was full on captain. I did horse riding. I did ballet. I played lacrosse, netball. I was super active and present in school. I was very, very happy. And so my mum was incredible. Without her I wouldn’t have gone through it. She fought for everything, absolutely everything. But I would say, yeah, I would say, I think a couple of months.

Natasha Lipman:

Which is actually quite quick for an ME diagnosis. That’s very, very quick.

Natasha Misri:

Yeah. This is where my mum will say no, it was way longer. But I’m fairly certain it was a couple of months. And my mum was just relentless. My mum was really relentless and very pushy. My mother is, when it comes to health and when it comes to the health of her loved ones, she was … Do you mind if I actually, would that be okay if I actually just text her now and find out what?

Natasha Lipman:

Yeah.

Natasha Misri:

I just want to find out whether this is, because that’s going to, I feel like that’s actually something I should know and I don’t.

Natasha Lipman:

Can you put her on loud speaker?

Natasha Misri:

Yeah. Hello? No, no, I’m still doing it Tashy’s…Tashy’s here at the moment. And you’re a loud speaker with her.

Mummy Misri:

Hello, Natasha. Hello, darling.

Natasha Lipman:

Hello. Oh, gosh. I haven’t heard your voice since I was a child.

Natasha Misri:

I just wanted to ask, how long did it take for me to get a diagnosis with ME?

Mummy Misri:

I would say about three months.

Natasha Misri:

Okay. So, it was about three months. Okay.

Mummy Misri:

It was, it was awful. It was hell. It was absolute hell.

Natasha Misri:

Okay. Thank you mummy.

Mummy Misri:

Okay, darling.

Natasha Misri:

Sorry.

Mummy Misri:

My love to Natasha.

Natasha Misri:

Okay. I will. Love you. Bye. So, there. It was three months and it was hell.

Natasha Lipman:

What kind of impact did that have on just your life? Generally? You said you were really, really active. And I didn’t know you before you got ill. But you were involved in so many things. And how did that then change for you in terms of school, in terms of social life, in terms of everything?

Natasha Misri:

Oh, everything changed. Everything changed. And yeah, I had been, I’d been a really active kid. My mum sometimes thinks that she’s worried that it was that I had been sort of pushed too much, whether that had been a factor in it. Because I literally, not a day went by where I didn’t have some sort of hobby to do. So, it was either like tap on a Wednesday, tennis on Thursday, swimming, like horse riding, ballet. So, I remember on Saturday mornings I didn’t get lie in. I literally would be woken up and then taken to ballet and then would have to change in the car to go horse riding and then would come back. But I was really happy. I loved all of those things. And for a really long time, and I think literally until now, whenever I was taken to go and see a ballet, very fortunately, I would have this horrible envy, like just in my stomach and in my heart of just like I wanted to do that, I wanted to do this.

Natasha Lipman:

I have the same thing with musical theatre. It took me so long to not feel jealous. Because I was meant to go to drama school in New York. I was meant to like do all of these things and then like I couldn’t do it.

Natasha Misri:

Yeah. And I remember you were so fantastic. And I think that’s the thing when you’ve got this passion for something and then it gets taken away, it’s not that you failed at it. It’s not that you got bored with it. It’s not that you wanted to stop or other things distracted you, it was your own body failing you. Oh my God. That was a real killer for me. That was a real killer. My dad says that one of his most heartbreaking memories, I think again, it was at the very beginning. And so although I was ill, I would sort of try and push myself because I didn’t really know what was going on. And so there was one day he came back and I was trying to be on my points with just like trying to do a little pirouette or whatever.
And he was just like, oh God. This is horrible. This is really horrible seeing your sick child desperately struggling to do the thing that she was able to do just a few months before.

But it totally, it totally, totally changed me as a person. I mean, I don’t think at 12 you can be called so much a person, as a kid. My friends, my little group of friends who I had been really close to, they initially used to invite me out and still wanted to include me, and still wanted to make me feel like I was part of the group.

But then inevitably by the 15th time you get told no Natasha’s too ill to come out. They stopped asking. And there was one time being in Pinner, in Cafe Rouge. And my parents had taken me out to just try and cheer me up. I think it was like after a doctor’s appointment. And I saw my group of friends crossing the street and it was just horrible because I just realised that I was no longer being asked. And if I was no longer being asked, it kind of meant that I was no longer a part of the group. And if I was no longer a part of group, I didn’t have any friends. Like that’s the truth. For, I would say, but pretty much until I met you, I had acquaintances.

Natasha Lipman:

Really? I didn’t know that.

Natasha Misri:

Yeah. I would say you, and then there were like some other girls. But yeah. Year eight, year nine and year 10 were pretty much a write off. And you were the only person who could empathise or understand. Otherwise, there was this whole part of my life that I was just trying to conceal.

Natasha Lipman:

I was talking to my mum the other day. And she said to me that I had said to her many, many years ago that you said, oh gosh, I feel like a teenager. My mum said that your mum said, that I was the only one that understood you because my mum had had ME.

Natasha Misri:

Yeah, absolutely. Absolutely. I mean, having someone who actually has heard of ME, even now, I get excited. If someone knows what I’m talking about, when I say ME and their faces aren’t blank. And that’s now when there’s been so much more awareness around the illness, I mean back then as-

Natasha Lipman:

20 years ago, 21 years ago.

Natasha Misri:

I haven’t even actually worked that out. That’s really big. So, yeah, if you can imagine like all that time ago, and there’s this person in my class who doesn’t have a blank face when I’m saying I have ME. That’s incredible. And you also feel like you are understood. There has been so much misinformation around the illness. I would say up until about five years ago, I never really wanted to say I had ME because it was always one that was associated Yuppie Flu or all those really crappy nicknames. I always wanted to just say, oh, I’ve got a chronic illness rather than saying what the illness was. Which now that I’m older and now that we’re so much more of owning our stuff, I feel really bad about. I definitely was not a campaigner.

Natasha Lipman:

How did that translate in school with other people? Something that I really wanted to talk to you about was your experience of kind of coming back into school because it was a really a very unique experience that you had in school. But also in terms of how did you talk about that with people? How did you even bring it up? Did you try and bring it up? I know that I was nowhere near as ill as you were. So, it’s like not the same in any way, shape or form. But I didn’t talk about my pain most of the time. I didn’t talk about those things because you wanted to be normal.

Natasha Misri:

I didn’t talk about it at all. Frantically shaking my head. No, I didn’t talk about it at all. And I used to get annoyed when the teachers would sort of bring it up because they were being kind, they were wanting to make other students aware. There was something different with me and I should be sort of treated a bit more with kid gloves and be kind to her. And this must be really hard. And if I were a teacher, if I were in their position, I would’ve done exactly the same thing. But I hated it. I did not want anyone to bring out or highlight anything that made me different from anyone else in class. I really didn’t talk about it. I think literally people knew I was ill, but as I said, I really didn’t sort of go around shouting that from the rooftops. My mum, however, had a whole folder, a binder for ME and full of articles and information. And for ME week should bring it in every, every week to school. And I’d be like, oh God, stop, please stop.

This is awful. I don’t want anyone to realise that I’m different. And now that I look back over it, I think I’m not entirely sure what I was thinking because clearly I was different. I literally came into school for an hour a day, a couple of hours a day. I think you and I have spoken about this before, where it was my physio. School for a very long time was basically an extension of physio. How long I could physically sit up how long I could interact with other people. But I mean, the truth is I would spend the majority of the time in the library. So, I would spend a couple of hours just in the library each day. And teachers would say to whichever kid was in class that I was meant to be in, go and see Natasha go and speak to her.

And so these so-called friends, like my peers, would come in and sit across from me and would try and interact with me. And they probably didn’t really want to be there. They didn’t really know what to say to me. And I didn’t really want them to be there because I just didn’t want anyone seeing me.

But I remember like they would come in and they would just be full of life and full of stories and full of health. And they would sit there with me for about 10 minutes and then they would leave taking away with them, all their life and health and stories. And it would always leave me feeling more alone and more isolated. I did become very sad when I was about 16. And I’ve always said to my mum and whichever doctor, if ever, they would try and highlight it. I would say, “I’m not ill because I’m sad. I’m sad because I’m ill.”

And that was, I think the only time I’ve ever been really, really depressed in my life was when I was about 16. When it was just so much. I was struggling to do my GCSEs. I so desperately didn’t want to be put in the year below.

And I think now that I’m older, I think that actually probably would’ve been, I don’t know. I think that could’ve been a wise move. It would’ve just taken the pressure off of me rather than trying to keep up. It just felt like I was frantically treading water just so that I could do my GCSEs with everyone else. Because I already felt like I’d been isolated from my peers. I didn’t want be more isolated from them.

Natasha Lipman:

And the impact that also had on your education is something that we’ve talked a lot about as well.

Natasha Misri:

Oh yeah. Tashy, I’ve got huge gaps in my knowledge. And it’s only now that we’ve got so much older and that people in their 30s have now started to forget what they had been taught at school that it’s not so apparent. But otherwise there are so many things.

My mum will say where somewhere is on a map. And I’ll say things like, oh, are you going to go down to Durham? And she’s like, no, Durham’s up. What are you talking about? And it’s like really basic things like that. Or with like history or, I mean, they’re just so many things that I really ought to know that I don’t.
Even really embarrassing things like than and then where it was just for ages. And I did an English degree where I was like, what is this? Because there was just like this huge foundation level, which was missing.

Natasha Lipman:

You talked about people coming in and telling stories and then leaving and the stories went away. How did this impact your relationship just with people in general and the way you thought about yourself in context or how you thought about yourself in relation to the people around you?

Natasha Misri:

I really didn’t think of myself at all. I think that’s why when I was 16, I got really, I got really, really low.

I just hated myself. Oh, I’m going to get all emotional. I really hated myself. Sorry. My body kept failing me. And so I couldn’t do all the things that I so desperately wanted to do. I couldn’t be a part of friendship groups. I couldn’t go out. I couldn’t do anything. And this thing, my body, which is supposed to get me from point A point B, it’s supposed to be on my side. It just kept on failing. And I think the other thing is at this point, I was still trying to navigate the illness. I don’t know whether that makes much sense, but I was still getting to terms with the ME.

Whereas now, now I know ME so intimately. So, I know when I’m having a good day, I know when I’m having a bad day, I don’t try and put too much pressure on myself.

I don’t beat myself up. I try and be my own best friend. It’s okay. I can try mindfulness, et cetera, et cetera.

But back then, I still wasn’t well versed. And so if I had a good week, I would just assume this was now sort of my trajectory was up. I always thought it would just be linear. It’s going to go this way. I didn’t realise that I would just have ups and downs. And I think you and I have said this, where if we’ve had a setback, we then really take it personally or can take it personally. And the difference between saying a flare up and a blip. And so I think for me, year nine, year 10. So, that’s what, 14, 15, 16. I felt that there was so much stop and start. I felt like, oh, I’m getting to grips.

I’m starting to be able to attend some classes. And then something would happen. I’d get like a cold or I’d get just knocked off, or just a flare up. I would just get knocked back off course. And so I felt all these friendships, all these relationships were just so fragile. It just felt like everything was being taken away from me.

And I do now kind of have almost, I can be quite self sabotaging where I’ll sort of think, no I’m going to pull the sort of like, I’m going to push the eject button on this. Because at least if things end on my terms, I can say, when things end. As opposed to, at some point, this is all going to be taken away from me. That’s been my attitude. At some point this is all going to be taken away. And that’s been very much ingrained in me since I was about that age, because everything was.

Natasha Lipman:

How much did you come up against disbelief or being pushed or so many of those things that people with ME often face that you are so young, how can you be so tired? Because people don’t know the difference between fatigue and tiredness. How can you not be able to do this? Why aren’t you coming out with us, from adults and from other kids?

Natasha Misri:

I think actually that’s where, I’m just thinking about this now. That’s probably where I’ve got my, I don’t want to talk about it attitude from. It’s like if I don’t talk about it, if I don’t show this part of me, you can’t disbelieve it. That would hurt so much more than at least I’m the one who’s chosen not to show it to you. If someone rejects you, at least you’ve rejected them before they can reject you.
Again, I think I was really, really lucky with the school. They were really good with me. And I think, and I know I’m so lucky with that. I know I’m so, so lucky. I’m one of the really, I think I’m one of the few, because anyone who I’ve met who’s had ME and had it at a young age. They’ve all come up against disbelief.
Exactly as you’re saying. And that’s been mostly from the school. And I think because they knew me at such a young age because I’d had a relationship with them, they always believed me. I really had a whole load of, I can’t talk highly enough about the teachers around me. They really, really cared and were invested in me as a person. And just with my own health. With other students, I think it wasn’t so much disbelief, but there was irritation on their behalf.

Because I could do certain things, but then couldn’t do other things. So, they would then think, okay, but you were able to, I mean, this would all be as I was getting better and I had more energy to do these things. I mean, I was able to go to The Dolls House and have some tea or piece of cake for one day.

But then why wasn’t I able to go out to a gig like the following day? And it was like, well, because those two things are completely different in my wheelhouse. And because I did that on Friday, I have no energy now for the rest of the week. And so I knew there was irritation. And I think because I never explained it to them, again, that was my choice because I just thought, I just don’t want to show you something that’s so intensely personal to me. Yeah. I don’t think they ever really understood. I don’t think there was ever-

Natasha Lipman:

One of the things that you said the last time we talked was that waiting has been a symptom of your life. Can you talk a little bit about that?

Natasha Misri:

I think there’s so much with when you are ill at such a young age, in one way you are shielded from like all the reality of what your life could be. At no point did I think this is going to be it. And I think because in my head I thought, well, this is just for now. I was always waiting to get better, waiting to be able to be with my classmates. Waiting to be able to do my A levels. Waiting to be able to go to university. Waiting for life to begin. I mean, life couldn’t just be doctor’s appointments and hospital trips and being fatigued and in pain. I was just so convinced that just couldn’t be life because I was just in the library for so much, so much. I would just pick up books and I’d read them.

And one of them was Wuthering Heights and getting to that passage where Kathy is dying and she turns to Ellie and says, “You pity me, but I am wearing to escape into the world. I am tired of being held prisoner in the shattered prison. I want to be really a part of the world and really with it and in it and not seeing it dimly through tears.” And I just thought, that’s how I felt. Like I was just waiting to be in the world. And I’ve got a very weird, I think, relationship now with life where I can be overly optimistic and positive and just like, oh my God, I’m walking down the street. This is so great. I can go and do a food shop. This is so amazing. This is just the best day ever.

And then there are sort of big things where I’ll sort of build them up in my head and think, oh, I’ve been waiting a lifetime to experience this. I mean, especially, I was essentially a 12 year old in an 18 year old body, which is a dangerous combination.

So, when I first met a boy, it was just like, great. He’s going to recite Wordsworth to me and he’s going to sweep me off my feet and this is going to be so great. And then you realise, oh, he’s an 18 year old boy. He’s rubbish. And so I think I’ve got this very sort of bi-polar attitude of just being really overly optimistic and positive, and then just like crushingly sort of negative and just, oh, this doesn’t live up to the hype.

Natasha Lipman:

Speaking of boys. Can we talk about your first boyfriend? Because your reason for dating him besides having a brilliant name, which we’re not going to say. But he had a brilliant name. What was the reason that you started dating him?

Natasha Misri:

His sister had ME. His sister had ME. And I mean, that was incredible to me. So, I met this boy who I thought was very handsome and was really lovely. And we were talking and he found out that I was a year older than he was. And so he had assumed I had done a gap year. When, instead what I had done was a classics A level in a year, because I could only do two A levels. And so he was sort of teasing me and saying, oh where did you go? And I started, I didn’t. I’d been ill when I was younger. And then I could tell, he starts to get quite excited and he’s like, oh my God. What did you have? I was like, oh, it’s nothing. I had ME.
And he just, oh my God, my sister had ME. And it was like the clouds parted and sunshine. I just thought this is, I have to be a part of this person’s life. I can’t wait to get to know his sister. And yeah, that was the thing I was most drawn to him about.

And I was really lucky, I think. I really landed on my feet when I met him because having a first relationship is difficult enough to navigate, let alone having a chronic illness. And this person completely understood my energy levels. My adolescence, I didn’t have to explain anything to him because he understood the vernacular of everything.

And his sister, oh my God, his sister was just the loveliest person. Still is the loveliest person. And she was the first person who I’d met, who had ME and who I had met organically. And having someone who completely, the same with you, understands where you are coming from and can actually see you and accepts you is, oh wow. That’s so special. Especially when you’ve spent the past five, six years trying to hide that side.

Natasha Lipman:

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How did you find that transition from school and teenagehood and all of those things that just everyone experiences with being a teenager and then everything you had to deal with on top of that? How did you find that transition into adulthood, into university, into engaging more with the world again, because you did have a remission at some point.

Natasha Misri:

Yeah, I did. And that would be when I was at university. Although, I do say I never really pushed myself to the same limits. So, once I then started to work, that’s when things started to flare up again. And I often think, well, I wonder if it’s because I was never really pushing myself you’d go to class and then you’d come back and crash. So, then you were able to go out and do something. But I’ve definitely, I’ve spoken about this with, two of my best friends at university were lesbians. And I think one of the things that we all bonded over and we spoke about this quite recently, was that we had similar sort of adolescences. They were desperately trying to come to terms with a part of themselves that was not a choice, just biological. And what that meant and trying to hide it from certain people.

And not that I can really, it’s apples and oranges. But it’s actually more apples and pears. I had something very similar, which is I was trying to come to terms with a path of me, which was biological that I did not choose. And I was trying to hide it from other people. And I think within that sort of little community, I felt very understood, very heard. And I think the other thing is I was able to sort of reinvent myself a little bit.

I remember being in my first sort of classes at university and I would insist on being called Tash rather than the Natasha. And now I’m trying desperately to break that with all my friends. I’m like, no, I’m Natasha. Call me Natasha. Yeah.
I just wanted to be able to take control a little bit more of how I was seen. I didn’t want to be seen as the ill girl or the one who missed out on so much schooling. Yeah. I kind of just wanted a clean slate. I wanted to step away from, or just take a side step from who I had been growing up. And I actually think I was fortunate enough to have had that remission. And in that remission, I think I came to terms and made a lot of peace with having been so ill when I was younger.

Natasha Lipman:

One of the things I’ve been thinking a lot about recently, I think partly because we’ve been talking about it, which led me to have conversations with my mum about it, is how hard it was for our parents. Because when you are young, as you said, you are shielded from a lot of things. You don’t know anything different. Even if like you hadn’t had this thing, your whole life, you adapt really quickly as a kid.

Natasha Misri:

I know exactly what you’re saying. You are shielded from so much. From sort of like the facts of the world. I know that my mum was the main person and my dad too. But it was her, it was her who was having to fight for my diagnosis. It was her who was having to take me to all my doctor’s trip. She was the one who had to have me hysterically crying.

I remember there was like a 24 hour cortisol test that they had. So, they take blood from you throughout the day. And then pump you full of like hormones. And because they kept on, say having to use different veins. And so they had to do it at the back of my knee and I was just crying.

And so my poor mum was the person who was having to like, hold me, distract me, take care of me. She had me crying, saying, I don’t want to go back to the doctors. I don’t want to go to physio. I don’t want to do … There was so much that she had to, A, fight for me to have all those opportunities and then also fight for me to actually get there because I didn’t want to. So, which would’ve been frustrating as well. She would’ve felt, she must have at times felt a little bit frustrated. I was only 12. I didn’t want to get, I was in pain. I didn’t want to get out of bed. I was in agony. And then I was getting dragged in the freezing cold to a doctor’s office where you get prodded and poked and different tests. No, that’s not fun, I don’t want to do that.

But it was definitely, I can see that it was so much, so much harder on her. And I know the older I get, I realise that she needed her own support network. So, both of my aunts have been incredible. But one of my aunts, I remember my mum calling up my auntie Chrissy and saying, Natasha’s really sad. This must to be when I was about 15 years old. And I just felt so alienated from everyone in class and just felt so alone. And so she called up my auntie Chrissy and then my cousin, Charlotte, who I’d always been really close to, from then on rang me every single day without fail.

Even if I could only speak for a couple of minutes, because I was too poorly, she would just call me. And I think for my mum, having that lifeline of someone who gets this and not only was she a great, a great soundboard for my mum, but then she could get my cousin to be an amazing soundboard for me. And I always say in my life, there are very few people who I think actually gets it and that goes for people who really, really love me and care for me. But I would say, yeah, my auntie Chrissy and Charlotte would definitely be some of them.

Natasha Lipman:

Something that always makes my mum really emotional is I think a doctor once said to her, who cares for the carers. And my mum never let me see how my ill health as a child impacted her. And she said, “It was so hard for me saying no to you. It was so hard for me seeing you suffering and everything that you were going through.” And she said, “I felt very sorry for you.” But she didn’t show that to me because it wouldn’t have helped me. And I know everyone is different and the way it was dealt with for me actually worked very well for me. I can’t even imagine how hard it was for my mum. And it’s only as an adult, as you said that I’m recognising that, because you kind of don’t think about it as a child because it’s like, they’re your parents.

Their job is to look after you and their job is to like do these things. And you don’t think also when you are growing through something that it has an impact on the people around you.

And I think a big part of growing up with these conditions is recognising how hard it is for the people in your life as well, which can have also, that can do like weird things to your brain too, because then you’re like, oh, then you start feeling like a burden and you start … It’s like when that switch comes it’s like, oh no.

Natasha Misri:

Oh no. I realised I’ve been a real brat with this. Yeah, absolutely. I remember saying to my mum well you don’t know what it’s like to be me. You don’t know the pain. And she’s like, and I remember her saying, I am a really close second. And I would actually now I would go as far as saying, her pain was worse than mine. I don’t know whether I would say, don’t know whether I’d still say that. Because I think now that I’m older, I’m sort of more aware. And also my illness is now sort of, I’ve taken over the reigns as it were. So, I’m the one now controlling it. Whereas for my mum, I mean she was the one who was having to do everything.

Absolutely everything. Yeah. She’s just been amazing. She’s been amazing. And just hearing her on the phone just now, there and she said it was hell. For me it’s a fuzzy memory. And I can just pick out certain instances. And I know the general feeling, when I look back, I think I remember being in pain and feeling alone. But for my mum, I mean she would remember every single date, every single doctor’s appointment, what they said. All of that is etched on her brain. It was definitely, I think, much tougher for her.

Natasha Lipman:

As you just said, you’ve now like taken over the reins of your health and you are now officially a grown up. Actually a grown up. How do you feel with your health now? And also, how do you feel looking back on 12 year old Natasha?

Natasha Misri:

There are definitely times and you’ll just think this is just so me. This was so me age 16. There are times where I will genuinely really feel like mum help. I can’t do this. I don’t know how to make this appointment. You know when you just are so fatigued and you are so over it, you’re just so tired. You’re just so tired to your core where you think I’m not making any sense. I know if I’m trying to make an appointment, I will make the wrong appointment. I just need assistance. Mummy help. But I definitely, as you said, it’s been over two decades. So, I feel almost for the first decade of being ill, I would say I saw my illness as almost like a captor. This was the thing that had imprisoned me.

This was the thing that took me away. This was an evil force in my life. I really, really, I hated it. I hated my body as a result. And then I wouldn’t say I see it as a friend, but I definitely don’t see it as an enemy. I just see it as a part of me. I’m far more accepting of it and I’m far more accepting of my limitations and I will say, okay, I’m having a bad day today. Or okay, I’m not making much sense. Or I’m in pain. Or it’s been a setback. I don’t have the same, that same sort of resistance to it. I would get almost that added pressure of, well, what’s the word I’m looking for? What is it? What is it? And not being able to pluck it out from the air would then irritate me so much.

I remember once having a meeting and I could not remember the word for car. And I mean, that’s such a basic word that was such a basic, but rather than sort of beating myself up, I was just able to laugh it off.

I would say another huge help. And for me, COVID has been devastating. But the amount of awareness people now have for brain fog is phenomenal. There are people in my life who I know have never understood that. That when I’ve said I’m really exhausted just sitting in this restaurant. They’ve not really understood that they’re like, you’re just sitting down. You’re just sitting down and eating. Were you not going to sit down and eat at home? So, what’s the difference to being in this restaurant. And then trying to explain, no, this chair is uncomfortable and I can’t lie down and I might need to be sick and the noise and the brightness and having to get there.

Natasha Lipman:

Sorry, I just had a flashback to when we were like 18 and we were in a restaurant, and both of us were just like heads on the table in between the food.

Natasha Misri:

Exactly, exactly. You’re the only person I could do this with and just be like, I can’t, I must sleep now. This is too much. This is too much having to sit and digest. How do people do this?

Natasha Lipman:

And people are so loud.

Natasha Misri:

And people are so loud. They’re so loud. And so that’s been the good thing for me, for COVID is having so many people who have said, oh God, my brain is just not working. It’s just not functioning. I can’t remember things. I’ve still kind of got long COVID. And at that point I’ll pounce and say, okay, so this is what it’s like to have ME. Or this is a little bit. Now you can kind of understand a little bit of what I mean when, and I’m not being stupid. I remember, and I feel really bad because this person was only 18 at the time. Or it could have been 17. So, for my AS year I missed the whole year. For my AS English exam, the only essay I had written going into the exam was my GCSE paper.

So, I had literally missed an entire year of school. And that was my last really bad flare up. And I remember being in a biology class and not knowing what’s, it was like a quiz and not knowing the answer or literally having no idea. I hadn’t been there for the whole year and turning to my friend and saying, I don’t understand. And her snapping and really loudly in the class just saying, what don’t you understand?

And just feeling just so, so small and just thinking I’m not stupid. I know I’m not stupid. But this makes me feel overwhelmingly stupid. And this response makes me feel just like, okay, that’s it. I’m never asking any questions again. And so with the emergence of long COVID, it’s just so nice to feel that there might be other kids who were, are in my shoes or where are my shoes aged 18. And now perhaps there are more people who will understand what brain fog is and won’t just dismiss it as oh she’s or he is a bit dim.

Natasha Lipman:

One of the things also that I’ve been thinking about is how we are as people personality wise and how we interact with the world because of our illnesses. We’ve both said this, that we are probably much nicer people. I think you are naturally a nicer person than I am by the way. But like, I definitely know, my mum said that I became a lot more empathetic. I became a lot more patient because of my health. And it’s kind of interesting to look at the way our illnesses have shaped us and how, the way we respond to our illnesses is also shaped by our personalities as well.

Natasha Misri:

Yeah, absolutely. I mean, I feel very much because my ME was in my life at such a young age. I feel like it’s almost been another parent. It’s been something that’s brought me up. And as I’ve said to my mum and my dad you can’t really get into a massive strop with someone if you then get up and say, okay, now you need to help me leave the room. I can’t actually stand up. So, you’re going to have to help me walk out. And I can’t actually, I don’t have the physical ability to slam this door. So, if you could slam it for me. And so you are constantly, well, it’s that line from that film I’ve always relied on the kindness of strangers. That has always stuck in my head. I’ve always, I don’t know about you, but when I have walked down the street, I will pick out a few people that I think, okay, if I have a fainting spell or if I need a little, I think you seem nice that I’m going to need to lean on you.

Which has been kind of annoying because I would quite like to be able to be sort of, I’d quite like to be sort of more confident or more, not abrasive, but just being able to be more direct. Whereas, I always come from a place of lacking. I’ve always come from a place of, I need your help. I need your assistance. I need you to be nice to me because at some point I could have a flare up. So, I definitely, I remember my ex-boyfriend and I, we had like completely different sort of styles of how we interacted with people. He was able to be far more brusque. Whereas I had to, I was always far nicer and far more gentle. But because I had no choice but to be. I mean, that is also actually just how I am. I’m very shy. But I definitely know that it shaped me in a way of knowing that I need people around me.

Natasha Lipman:

What would you say to 12 year old Natasha with everything that you have learned in the last 20 something years?

Natasha Misri:

Gosh, I’m going to end up getting teary again. I just want to hug her. Because as unaware of everything I was scared. And I didn’t really know what was going on and I was unhappy. So, I think I would say that it’s okay to feel everything you’re feeling. I think I would say for her to speak up a little bit more. To probably tell people what you need from them. I know you and I had this conversation about, when I said to you of seeing my friends in Pinner and realising that I hadn’t been asked to go out. And I could have just said, hey guys, I know the answer’s probably going to be no. But it’s always nice to be asked. Just because I can’t be present it doesn’t mean that I don’t want to be present.
So, I think I would tell her to use her voice a bit more. That there might be some people who don’t get it, but that’s okay. It doesn’t mean that they don’t get you. And it doesn’t mean that what you are saying or what you are feeling is incorrect or a lie, it’s just that they don’t get it and that’s that’s on them. That’s their journey. And I would say just try and be as gentle on yourself as possible. That I think that was the main thing. I was so tough on myself as a kid. I just beat myself up so much.

I just saw my body as such a failing. I saw myself as such a failing. And so I would say that to just try and take it easy and that this isn’t as bad as you think it is. And the people who you do meet, and this is one thing I absolutely believe, my friends who are my friends, you, are people who I could call on at any time. And who I can really lean on. And I think that is incredibly special. Those friendships, one of those friendships are worth like a million Facebook friends or I don’t know, because I don’t do socials. But like fake friends. Those are the real special people. And I think that makes me very lucky.

Natasha Lipman:

A huge thank you to Natasha for sharing her story with me. This was a really emotional episode to record and there were many quiet tears on the video as we did. It gave me a deeper insight into my friend’s experience. And I think speaks to a lot of things that many living with chronic illness can relate to.

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“I hated myself”: becoming chronically ill at 12

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