Podcast: Living with an invisible disability

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Transcript

Nick: Hi everyone and thanks for tuning in. My name is Nick and I’m your guest host for this month’s episode. We speak to Mili, a young person with M.E. – a condition that is also known as chronic fatigue syndrome or C.F.S. Mili tells us all about living with invisible disabilities, the challenges she faced and how we can improve attitudes to people with invisible disabilities. So, let’s get into the episode.

Nick: I'm here with Mili. Welcome to the Disability Download, Mili. Thanks for joining us!

Mili: Thank you so much, Nick.

Nick: So I'll start with some very easy questions! Where do you live now? And where are you from originally?

Mili: So I'm originally from Argentina and I live in Liverpool, UK.

Nick: Cool. Excellent. Can you tell me what your condition is in and when it first started?

Mili: Sure. I have M.E. / C.F.S. Some people know it as chronic fatigue syndrome. I hate that name because it sounds very wishy washy. And I had it since March 2020 when I caught a virus – which could have been Covid, I don't know – and since then I basically never recovered.

Nick: Right. And how does your condition affect you?

Mili: Well. It's hard to say because the answer would be, you know, it affects everything. Because the issue with this condition is that it's not something that is either physical or mental: it just affects your whole body. So there's not a lot of understanding of how the actual illness works, which is an issue in itself. In short, how it affects me is it affects everything. 

It affects my energy levels, which is the most obvious because of the name, but it also affects me mentally and just has a lot of symptoms all over the body. It's not severe for everybody, but the more severe it gets, the more symptoms you will have or the more severe those symptoms will be. And you will realise that it really does affect, you know, your whole life. So I'm in a situation where I'm basically in bed all if not most of the day. 

I can't work because, you know: if you were just with a physical illness, you might be able to work, you know, with your mind, and lie in bed. But it's not really like that because when you push yourself, physically or mentally or emotionally, or anything you do beyond your limits, it affects your whole body. So you start feeling all the symptoms where you have, you know, headaches, sore throats, muscle aches. Just increased like fatigue, like exhaustion. So it's really just not a fun illness, to be honest.

Nick: And does it vary day-to-day?

Mili: It does. But if you're, if you're very good at pacing… which is the only thing that could be classed as some sort of management for the illness because there's no cure or treatment. But pacing is when you stay within your energy limits. So if you're very disciplined, you should be as stable as possible. The problem is when you have… you know, I've been living on my own for a long time and my energy limits are very small. If you do too much on a day – just mentally or physically or emotionally – [if] you just, you know, go out of your limits, then the next day or maybe for the next few days, you will feel worse. So that's basically what sets it apart from other, you know, fatiguing conditions. That's the main point of focus.

Nick: What was the attitudes of people towards your condition after your diagnosis?

Mili: Well. When I first got diagnosed, I wasn't feeling as well as I am now. So I think it's hard, and even to this day, for everybody to really understand because this is basically an invisible illness. And if you look at me, I seem fine. If I'm not having a terrible day, or if we're having a conversation that is not too long… you might not notice, you know, my symptoms like: brain fog and, you know, things like pain and headaches. You can't really see those. 

So I think that, you know, friends and family are maybe still getting used to the fact that I'm not the same person, in the sense that I had to give up a lot of things that I used to enjoy because I simply can't do them any more. And at first you know, for example: for my parents, they live in Argentina. So they saw me, you know, via webcam for like 2 years and I told them all about what was going on. But I could tell it was kind of hard for them to wrap their heads around and learn the name of the illness, which is really hard. And now they know it better than me. But my mum would be like: “you don’t need a wheelchair!” You know, things like that. And I don't think she had ill intentions. I think she's just… You know. Like I said, it's really hard to wrap your head around. Then they did come to, you know, care for me because they noticed… 

Like I said to them, like: “Look. I really, really just can't do this alone.” So they came to the country for six months just to look after me. And that's where, you know, we got the wheelchair and we did all those things. And I think that's when they could tell. So I know it's, you know. The attitudes of people who don't see you every day, or could see you at a distance, might be: I don't want to say disbelief. But it might just be like hard for them to really understand what you're feeling because you might seem fine or they might not see you at your worst. Because you know, when I talk to my friends, I do it when I'm feeling OK. 

And if I'm feeling completely rubbish and I'm sending a note, you know, and I can't really hold my phone, I'm probably not gonna talk to them because I need 9my rest. So they don't see, you know, that uglier side. Or they don't see me in bed. They just, you know, see a text message from me saying, “Hey!” You know, like I’m in a good mood. But my whole body is aching. All of us who are not really able to participate in society, the general public doesn’t really see us unless we have milder symptoms where we can go out and do things. So that’s why, you know, it’s not just a hidden disability. So I think that is the main issue. So I understand why… the attitude to others [and their] illnesses is a bit, you know… it might not be easy to understand.

Nick: And what about the attitudes of the medical profession?

Mili: When it comes to, you know, doctors and all that, the problem is that this condition isn't diagnosed with any tests. There's nothing. There's no, there's no markers or anything. So there's a lot of disbelief when you're maybe not that sick. When you're told, you know, like: “Oh. It's just your age.” You get to be brushed off because you tell them you're symptoms and they might not think it's a big deal – especially if you're a lot more able, if you're a lot milder. And the only way to actually diagnose it is to look at your symptoms. So you need a lot of months for doctors to be like: “Maybe this is not a good thing”. And then you need, you know, some tests to discard other fatiguing conditions, which is what I did to get my diagnosis.

 But even after three years of the condition, even after being diagnosed [by] two different specialists, if I go to a doctor now I will still hear things like: “ But you look OK!” “But you seem fine. Your tests are fine.” You know. And I get it. Maybe they didn't even learn it in school – when, when they were in in medical school – because the condition hasn't been researched very well. But when you get comments like that… You know, when you get a cardiologist. When I say: “Please. My heart rate is so high. Can you give me something?” And he tells you: “You're fit and healthy and you don't really need that wheelchair. It's so frustrating because it's like: you're a doctor! You should be a bit more compassionate if I'm telling you this. And I have a diagnosis. Don't make me fight for me to be believed when this is what I experience every day. And just because I'm out of the house because I have to [be], it doesn't mean I'm not in bed 24/7, you know, for days before and after me being here in this consultation. So it's really, really hard for that reason.

Nick: How do you think things can improve?

Mili: So I'm not really sure how… you know, what the solution is. Probably some sort of, you know, more awareness from doctors. I think it would be common sense first of all to, like, listen to us if we're telling you how we're feeling, and not trying to minimise our symptoms or treat us as you know as we're exaggerating. 

You know. I understand if the attitudes need to be changed and they take a while, because I mean: imagine like just changing all that… [the] really wrong concepts of what the illness is because we're not, you know, making things up. We're not. Just because our blood tests are fine, you know, we're not making things up. We're not exaggerating. We're just in a condition that the more we do, the worse it gets. The best thing you can do is pace. The best thing you can do is is rest. 

Nick: Yeah. So you want better attitudes from the medical profession, and less dismissal and more listening to patients. Would that be fair?

Mili: Yeah. And more research. I would add more research – which is only just starting but I hope with Covid and everything we will see more research as well.

Nick: And what support are you receiving now?

Mili: What I did was just… I asked a friend if he knew somebody who could help me with like, cleaning and changing bed sheets and things like that, which is something that I am doing well to do. Last time I tried vacuuming, I pushed myself way too hard and I ended up with a fever. It was really bad. So I am not doing that any more.

So I have, you know, help like that just from friends who, you know, can like: help me with cleaning, or help me with, like, small errands and things like that. So I'm really grateful for the people I have in my life who are really, really helpful. And also because you know, they get to adapt to me and it's more on my terms. But I understand that some people might need somebody to be with them, like all day long or something. If I can.. If I can have my parents soon, I will have them here. 

You know, for as long as they can stay. And they're going to help me with everything. Because when they're here, they just do everything. I just stay in bed. And then I just go to the toilet and back. That's all I do. And they, you know, bring me food and things like that. And I don’t have to worry about, you know, getting groceries delivered. It’s so much effort.

Nick: How often are they able to come over?

Mili: My parents? 

Nick: Yeah. 

Mili: Well, I mean, my dad has his own condition. So he's now, you know, going through some tests to see if he can try some pills to help him manage his condition. So as soon as he gets the all-clear from his doctor, he's going to be able to come. But because, you know, we have Italian citizenship, they can only stay for like six months. So that's also a problem because they can't stay, you know, indefinitely.

Nick: And what are your hopes for the future – for you, and for how society responds to people with your condition?

Mili: Well. The first thing that I would like to see is just more research, more understanding of the illness. Because I understand that everybody has a different approach or a different attitude to their own illnesses and disabilities. But I think that at least most of us would like to be cured. And that is not – in any way, shape or form – a way of saying that we are ashamed, or we should be embarrassed or angry about our conditions, but I'm sure everybody wants to be healthy as possible.

 So I think that's more research is the main thing. I'm so happy to see, you know, more things being done. I submitted my spit sample to DecodeM.E. – which is somebody is doing the DNA sampling from a lot of M.E. patients. Just to see, you know, if there's any genetics, you know, behind it. Because again, there's not really… there's not even like a proper diagnosis test. So that would make things so much easier as well, even if there can't be like a complete cure. And if we can have some sort of management to make our lives easier, that would be amazing. And while we wait for that. Yeah, of course. Anything that could come from society which, you know, makes us a bit more comfortable if we are sharing our experiences or how we feel. 

Not just to, you know, look at the name and say chronic fatigue and be like: “oh, you're just a bit tired”. You know. And I understand that that might be because. of the name; it might be because of the lack of, you know, discussion around the illness or the lack of research for so many years. And I know that being sick for only three years, I'm really lucky in that sense. Because there's been people who have been having to deal with this for decades. I think we are going in the right direction. So that is really important. But I think that until we can, you know, be understood, be less judged… And just… I think that the easiest way would be just to accept what we say. 

If we say that, you know, we have all these symptoms and we still look fine, you know, we're not making it up. And ask questions if you're curious or if you don't understand. And I also, you know, sympathise with people who can't see, you know, from the outside what it feels like. Because I know that it's hard to see when somebody is, you know, having pain or other symptoms that are invisible. But you know, just don't be, you know, dismissive about it. That is the main thing, I think.

Nick: Have you got any advice for people with M.E. who might be newly diagnosed… or just starting with M.E.?

Mili: Oh! Thank you so much for that question because I wish I'd been advised when I first got diagnosed. So the first thing, and this might be a long answer, but the first thing is if you're diagnosed with something else – like if you start feeling like there's something wrong after a virus; or even if you just feel like you have fatigue, neurological symptoms and, you know, all these symptoms that don't make sense:. don't brush them off.

Because I did that and the condition gets worse the more you push yourself. The earlier you know that there's something wrong, just go to a doctor. And if they dismiss you, just try again. Because there is something wrong. Don't let them tell you otherwise. Be aware that this is a condition that is diagnosed by symptoms and by discarding other conditions. So be, you know, as strict as possible, keeping track of all everything you feel. Because when you go to the doctor: the more you sound like you're another doctor and not a patient, the better your chances are that you're treated seriously. So be very careful about not letting people downplay your symptoms. And learn to pace. 

So learn to manage your energy, learn… figure out what makes things worse. And be very wary of your mental energy as well as your emotional energy. So you might say – like I did, you know: “I'll just lay on the couch all day and I'll be fine.” But if you're, you know, very stressed, or if you're very busy mentally, it's still not good for you. And, you know, do whatever you can to reach out to other people. Because to me it was life-saving, quite literally, just to, you know, go to support groups. 

I use a lot of like Facebook groups and you see all these other people who are in your same situation – some better, some worse; and you're still learning about, you know, from everybody else's experiences. So, for example: I bought myself a Fitbit, which is like an activity tracker. So I could see, like, how many calories I used. And I went from feeling: “Hmm, I feel kind of worse today. Hmm, I'm feeling kind of better” to, like, really knowing what was going on. But it took me months for me to get there. So if I had known, like, right at the start, I might not be as disabled as I am now, So I can't stress this enough, just like: if you're suspecting it, just try to get the diagnosis. 

Don't let like a good day make you feel like you're making things up. And I know it's a really long answer, but it's just something I'm really passionate about. Even though I've been sick for only three years, I just, I… Everybody that I meet that is like a newbie. I'm like: “No, no. I want to help you!” Because I've been through that. And I am so close to severe now that I don't want anybody to go through that.

Nick: That makes sense and thanks for that really useful advice for people. I'm sure they'll find that really helpful and really appreciate it. Thank you so much for your time, Mili. And happy birthday once again for yesterday and …

Mili: Thank you so much. 

Nick: Thank you. Bye.

Nick: Some great advice there from Mili – for people with invisible disabilities like her, and for wider society too. I really hope people that the public and medical professionals take notice of her advice not to dismiss symptoms and to listen really closely to the experiences people with these conditions. Like Mili, I hope there is more research done into M.E. and other invisible disabilities.

We’d love to know what you think. Get in touch by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram @LeonardCheshire. And if there’s a guest you really want to hear, reach out and let us know! And don’t forget to like, share and subscribe to the podcast! Thanks for listening. I’m Nick and this has been The Disability Download.