Podcast: Crohn’s and Colitis’ hidden challenges

Transcript

Ben MacFarlane: But I never want anybody to go through what I put myself through. Cause it was…I did put myself through it. Because I wasn’t in a position where I could speak out and I bottled it all up. Now that’s not the right way to do it. But I get it. People are scared to make that first step towards admitting that it’s not just affecting them physically, it’s affecting them mentally.

Erin O’Reilly, Leonard Cheshire: Hello, and welcome to the Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I’m Erin O’Reilly and on this podcast we respond to current topics, share stories, and open up conversations about disability.

So I can’t believe we’re nearly at the end of 2020 and this our last podcast episode of the year! But I’m really excited about this episode actually, because this month we’ve teamed up with Crohn’s & Colitis UK to bring you an episode that’s all about non-visible disabilities and health conditions and the stigma that can often come with it. Raising awareness about this topic is something that both Leonard Cheshire and Crohn’s & Colitis UK are passionate about.

You might remember we had our Disabled Looks Like Me t-shirts earlier in the year in collaboration with Mimi Butlin, and a podcast episode on that as well. And Crohn’s & Colitis UK do really important work in this area with their Not Every Disability is Visible campaign, which has actually resulted in over 3,000 venues including supermarkets, travel hubs and pubs and restaurants across the UK installing toilet signs that highlight that not every disability or health condition is visible. And they’ve also trained staff about Crohn’s and Colitis to raise understanding of invisible conditions.

So the most common, but by no means the only symptom, of Crohn’s and Colitis is frequent, urgent diarrhoea. So this can make getting out to do even the most basic things like shopping for food or taking exercise really challenging – especially if you don’t know where the nearest toilet is or if you’re concerned about being challenged for using that toilet.

Because Crohn’s and Colitis are invisible, unfortunately over half of people report having a negative experience from the general public for using an accessible toilet and over half of those negative experiences include verbal and / or physical abuse – and that’s all just for trying to use the accessible toilets they urgently need. So through their campaign, Crohn’s & Colitis UK are challenging public perceptions of disability.

So for this episode, we chat to Ben Macfarlane, one of their campaigners who has been working hard to challenge these stigmas. Let’s give it a listen!

So thanks so much for joining us on today Ben on The Disability Download. We’re really pleased to have you on the show and to know, you know, hear about your story. So you’ve been working closely with Crohn’s & Colitis UK on their ‘Not Every Disability is Visible’ campaign.

So you’ve been raising really, really important awareness about non-visible disabilities and health conditions and the stigma that kind of comes with that as well. So I thought maybe we could just start by you telling us a bit about yourself and your journey and how you kind of came to work closely with the charity?

Ben: Yeah well thanks for letting me come on this as well actually. I’ll start with saying thank you, because I’ve had this for so long and I’ve not really been able to speak out about obviously my journey with the illness. I was diagnosed a long way back in 1998/99 and it wasn’t, what I compare at now to what it’s like now to what it was like when I was diagnosed…when I was diagnosed there was none of these platforms. 

There was no podcasts, there was no social media, there was you know, there wasn’t groups, there wasn’t support networks out there. And no one around me knew what Crohn’s was. So it was a bit daunting for me, a bit scary. Cause I was told, just go and look it up. I was given like a two page leaflet and said “there, that’s your illness, go and Google it.” And I was like Ok, and that was the worst thing I ever did. Because it just gives you the worst case scenarios.

You know, sort of going back like before then. I was like working down in London, probably like 1998, and I’d never seen, like I was working down in London for about six, seven, eight months and whilst I was down there I started noticing like changes in my toilet routine, my appetite had gone down. But I didn’t really see the weight loss because you don’t notice it yourself, it was only when I’d come back home that people were shocked. People were really like…because I’d lost a lot of weight.

Now I must have been about 18/19, and I was weighing in probably about 8 and a half stone. If that. And it was then when obviously people were scared and worried about my look, and how I seemed, that I was took straight to the doctors then. And I went to the doctors and I had a few little tests. He was saying like “not enough fibre in my diet” so I was on these like fibre gel type of drinks that you take, but that just made me worse. And then I had some bloods taken and then I was took straight into hospital as an emergency appointment. And it was great, my specialist, Dr Sturgess, he was brilliant, absolutely amazing. Made me feel dead comfortable, relaxed, because again I was going through it alone.

I didn’t know what was wrong. He hadn’t even said about Crohn’s or Colitis then, we were just going in to find out what the results of the blood test were. And he was shocked that I was still standing, because my blood numbers were down, like almost like about I think I remember it was about two and a half to three and a half and he said I shouldn’t have even been standing. And he just said right you’re going to have to come into hospital.

So I thought ok, I was 18/19, I thought ok so I’ll go home and I’ll come back and you’ll send me a date and he was like no, you’re not going anywhere, you’re coming straight in. And I was like…that scared me then, it did give me a little bit of a…I’m not going to lie I was a bit scared. And as soon as I got straight on the ward I was pumped with all drugs, I had a tube fed down to my stomach, I had two pints of blood…two blood transfusions and I think that was then the start of my long, long, long journey of dealing with Crohn’s and Colitis.

Erin: So it must haven quite scary obviously going in, not really knowing what’s going on and when it’s not being talked about widely as well it’s kind of like a completely new thing for you.

Ben: It was, it was as I said I’d never even heard of it. And I said, I sort of relate it now to what it was back then, when you told people like friends or family members oh Ben’s in hospital he’s got Crohn’s, they’d be like oh what’s that, I don’t know what that is, don’t know what that is. Now, you say it, and I talk about it more open now. Because I haven’t been able to talk to people for all that length of time, because no one understands it. Now you’re on a sort of platform now where you can speak out. And yeah I’m not going to lie, I was embarrassed. I didn’t want people to know about the illness, because it was toilet related. So there’s that weird sort of feeling, like you start talking about like you’re going to the toilet, this, that and the other, people sort of switch off. They don’t want to hear that. It makes them feel uncomfortable because it made me feel uncomfortable. 

Erin: So how did you kind of go then, from the feelings of, you know, embarrassment and kind of reluctancy to talk about it, to then you know being a really important part of a big campaign on it?

Ben: I only just started speaking out about it for about 3, 4 years. And that’s me being completely honest, because I never had the confidence to actually talk about it. Obviously, there was a more of an understanding about it through like my friends and family. They obviously had more of an understanding, but then I was on social media and seen Crohn’s & Colitis UK.

So I joined up with them, I started following them and then from that I put myself forward to volunteer for them for the Merseyside network. And from there, I just started to develop more of a confidence to talk about it. Because I was finding the more I was talking about it the more people were saying they know someone who’s got it. And it was, they were asking me questions then. Obviously at first they were a little bit…they don’t know whether I might be offended them asking me questions, but once they got to know me and saw that it was ok to sort of ask me whatever they want, I was getting more and more people asking me what happened with this bit, what’s that part of the illness, what treatment, what side effects I’ve got. And I was open and I felt comfortable talking about it so that just sort of made me want to do more to help people with the illness.

And not just the people with the illness, but it’s also the family that’s affected. Because sometimes they haven’t got a clue what to do because they don’t know what to say, what’s the right thing to say what’s the right thing to do, because they don’t know themselves. They only know what the person’s told them. But unless you’ve lived with the illness, I don’t think you can really have a true understanding of what it’s like living with the illness.

Erin: Definitely, and I think obviously there does tend to be a lot of stigma around kind of non-visible disabilities and like you say that lack of awareness about different health conditions just really affects how people view it and react to it. And obviously since you’ve been working with Crohn’s & Colitis UK they’ve done some really important campaigning work in terms of getting more restaurants and pubs to have the accessible toilets sign and you know spreading more awareness about it and getting people thinking, which is great. From a personal perspective how do you think, you know the stigma associated with non-visible disabilities has impacted on your life and maybe even your mental health as well?

Ben: Well it does impact on you, because I said, some people like look at me and they’d say oh no he’s fine. Even when I’ve told some people that I’ve got it, they’re like “oh you don’t look like you’ve got it.” Like well you can’t just look, like you say, that’s a physical illness and it stand out to you, because it doesn’t. It’s exactly like it is with mental health. With mental health you don’t walk around with a big sign on you saying “I’ve got mental health”.

Like we don’t walk around with a big sign saying we have got an illness that’s invisible. Because, and sometimes that does annoy you, and it’s almost like when you do have the symptoms of you know flare ups and that, they’re almost looking at you saying like “yeah you haven’t, you don’t look like sick.” You just, it’s sometimes…obviously the illness, if it’s really, really bad you do suffer with severe weight loss. I get that. But sometimes it’s flare ups that last for 2-3 weeks, and sometimes don’t lose weight. I’ve noticed the more flare ups I’m having now, I’m not losing weight. But I’m still having flare ups, I’m still bleeding, for 2,3,4 days on the run. I’m still in bad pain, I can’t leave the house, so it’s that, that can be quite frustrating and again some people who are sick, who have not maybe followed it up and maybe haven’t gone and seen a doctor, because they’re new to the symptoms, they haven’t been diagnosed yet.

And when people say “oh you look alright” it’s sort of putting them in that frame of mind, like they say I look alright so it must just be me. I must just be over exaggerating. And that’s not right, it’s not, this is what the illness is all about and that’s why we campaign. It’s a massive thing. And when they asked me to take part in it I was made up. Because it wasn’t just one person’s view. It was four different people’s views on how it’s impacted their lives. And they went through the whole spectrum. Yeh it is a physical illness and yeah it does knock you on your feet. You can’t argue that, but it’s the mental health side of it.

The mental health side of this illness needs to be addressed more I think. Because I’ve like, obviously since I knew I was going to be on this podcast with yourselves, I’ve sat and thought about things more. Just that I might want to sort of address more. And I look back now on like over 20 odd years of having this illness, I know now looking back, it did affect me mentally. My mental health, I wasn’t a normal 18 year old happy kid. I was living with an illness that I didn’t know nothing about. And it was controlling my life. I weren’t going out, because I couldn’t go out. I was letting people down. I was letting people think I’m just being antisocial, didn’t want to go around them. It’s not the case. I was embarrassed to go outside, because of obviously the weight loss.

People might say oh it’s only women that fixate on body image. That’s a load of rubbish. Because men are just as bad about their body image. And I was 18, probably near on 8 stone, 8 and a half stone. All my mates were big and hefty lads. And when I was out, I felt embarrassed. I felt people were looking at me. It started affecting my mental health. And that was like knocking me down. So I started becoming anxious about going outside, getting down and just thinking when’s this going to end. Because when a flare up comes up, you don’t know how long it’s going to last for. It could last for a week. It could last for 3 weeks. In my case it lasted for 3-4 months at a time. And you know, people just don’t understand. It does affect your mental health, and you really need to understand more. Because it isn’t just the physical side, it is the mental health side. And it really like…when I go to the GP to talk to them about it, it’s like sometimes they don’t understand. And these GP’s are supposed to sort of understand what you’re saying. And it’s frustrating. Cause you just feel like you, just, you’re on eggshells.

Cause you’re thinking I could go to sleep tonight, and wake up tomorrow, I could be having a flare up. Wake up to a flare up. Living with that thought in your mind, every day, all your life. That’s what, basically I’ve had this illness longer than I haven’t had it. And I wake up every day wondering what’s going to happen? Is this going to get worse? Am I going to need another operation? Am I going to spend months lying in bed again, letting my kids down, letting my friends down, letting my family down? Cause that’s the impact it does have on you. And it does break my heart and it does get me upset. I’m not going to sit here and act all macho. Because I’ve done all that and it’s got me nowhere. I’ve broke down in tears, absolute tears worrying about this illness. And I’m not going to lie, I’ll probably do it again.

I’ll probably end up breaking down again, but that’s just…it’s part and parcel of this illness. And I have to realise now not to beat my self up. But obviously you need to sort of address these issues sometimes and I put it off for years. And again I’m not going to shy away from the fact, I’m quite open. I need to get out about this because it is affecting me. I’d say more mentally than actually the illness physically is. And I realise that more than ever now.

Erin: Yeah and I guess kind of raising that awareness will help other people kind of you know, other people listening to this and will totally relate to how you feel, and it’s just so important to talk about it and have that awareness, and have I guess a good support system of people around you that understand it and get it. And you know can kind of just listen to you and hear what you’re saying and actually, you know, have that empathy as well.

Ben: Yeah, it’s cause you, know, I don’t want anyone to suffer the way I’ve suffered. Don’t get me wrong there’s thousands and thousands of people out there, and we’ve all had our own journey with this illness. But I never want anybody to go through what I put myself through. Cause it was…I did put myself through it. Because I wasn’t in a position where I could speak out and I bottled it all up. Now that’s not the right way to do it. But I get it. People are scared to make that first step towards admitting that it’s not just affecting them physically, it’s affecting them mentally. And cause it is…cause people…are worried about what other people think.

I worried what other people thought, for years. It’s only over the last four years maybe that I’ve come to terms with, you know what, I can’t worry what other people are thinking. I’ve just got to do what’s right for me. And that’s it. And I just don’t want, I wouldn’t want anyone to suffer in silence and again that’s why I think Crohn’s & Colitis UK, they’re not just helping out the physical side, they are bringing to the forefront of it does affect you mentally as well. And I think people are learning that and they’re going “well I didn’t think about that side of it, I just thought about the physical side of it, I haven’t really given the mental side a thought.” And now they’re sitting down and taking note, and maybe having a look at who’s got it or a friend that’s got it. And being aware of maybe just reaching out to them and saying “listen I’m here if you need me, I know you might be fine, but I’m here if you want, if you need to talk.” Cause that little doorway that’s opened, for someone suffering from mental health, it’s easier for them to step through it than it is if the door was shut. They’re not gonna knock on the door and open it themselves. They need someone to open that door for them.

Erin: Definitely, and kind of going back to, you know, what you said earlier, as well about often having to deal with kind of the stigma and stereotype of well you look ok, so you know there’s nothing going on. I think that idea is obviously so important this year of kind of you know going through a pandemic and realising that not every disability or health condition’s visible and you know there are people that are very vulnerable that you wouldn’t ever know or think of.

So kind of thinking more about this year and the mental health side of things and being in lockdown, what’s your experience been like this year and do you think people’s perceptions of non-visible disabilities are kind of starting to shift at all as an outcome?

Ben: This lockdown, do you know, it’s not just…it’s tested everyone. I think I’ve…it sounds stupid saying this but this lockdown is what people experience, people with this illness or an illness similar to myself or like an illness where you’re sort of kept indoors a lot of the time when you’re having a flare up...this is our life…this has been my life for 20 odd plus years. Because when I’m sick I can’t go out the house, I have to stay in, I don’t feel...I can’t go to work, I can’t go for a walk, I can’t go to the shops, I can’t go to the gym, I can’t do anything, because I’m stuck indoors.

So, this is, it’s not a new thing for me. This is just what my life’s been for the last 20 odd years. So I’ve adapted to it quite easily if I’m going to be completely honest. Don’t get me wrong, there’s days where I’ve struggled, and I mean really struggled, and it does get you down and it’s, then the days become long. The days become long, lonely and depressing. They do. I can’t deny that. Wake up, what have I got to wake up for. You know there’s no reason to wake up because there’s nothing going on for the rest of the day, what am I going to do, sit on the couch on my own? But then you’ve got to sort of try and change that mindset a little bit. Which obviously you can do different things. Like I have read a lot of books. And not just like, a lot of different books, and books that have helped to be fair.

A lot of self help books to be fair, and that changed my frame set and I thought right, I need to set a routine and get things sorted. Cause I can’t be waking up every day thinking what’s the point, what’s the point? Because the weeks and months are going to be long, long and hard. So I did change that mind set. I started setting myself little routines. And that may sound stupid, but it’s the little routines, like right I’m going to clean the kitchen today. You’ve done that. That’s a job that you can tick off, and you can sit down and say right I’ve done something like that. So that side of it, obviously I had to change. Because at the beginning, even though I was used to this because this is my life, it was a little bit, bit of a shock should we say.

Because obviously I started worrying about my kids, starting worrying about my friends, because this time my friends and kids are getting, they could like become sick. Where it’s not just about me being sick, it’s others, loved ones and friends, they could become sick. So you do start worrying about them a little bit, thinking are they ok, are these alright.

Erin: And do you think, everyone kind of you know, experiencing lockdown together, do you think it will kind of make people, you know more aware of what it’s like to kind of have a disability and you know this actually being reality, do you think it will make people more kind of empathetic? And help raise that awareness and get people actually having those conversations and thinking about it, kind of once the pandemics over? 

Ben: Do you want my honest opinion? No. I really don’t, I don’t think it will. I actually don’t think it will. Because there’s so much negative stuff put out there, which obviously I made the decision to come away from social media for a while. Because of what’s going on, there’s a lot of negative people’s opinions and I know everyone’s entitled to their own opinion. But people are pushing their opinions onto others.

And it’s like when people have like…me myself, I’m high risk, and they’re saying it, like you tell people you’re high risk but then there’s hundreds of other people out there telling you oh it’s a load of rubbish, it’s a load of rubbish. And they’re playing down people’s illnesses. They’re not really taking that concern because they’re fixated on another thing that’s going on at the minute. And I know everyone’s entitled to their own opinion and I get that. But when your opinion’s affecting someone else and I t’s making them feel like they’re not being heard, that’s wrong. That’s when they start to become…you’ve crossed the line. And then…does that make sense what I’m trying to say there?

Erin: Yeah, I think the pandemic’s definitely shown people have yeah very different opinions on it. And it’s not necessarily bringing everyone together.

Ben: No, do you know what and it hasn’t. You’ve just nailed it, and that’s…it hasn’t brought us together, it’s separating people. And it’s not nice. And you’ve got to be careful sometimes because some people might play it down, but then you’re offending other people that have lost loved ones to this illness. And this is where again, when you’ve asked the question has it brought people’s understanding together…I, me personally, my opinion is no. I don’t think it has. I actually think it’s pushing people further away.

That’s the sad thing about it, that is the sad thing about it. And you’ll walk down the road with a mask on, some people will be thinking right ok that’s fine, but then you’ll get another bunch of people that’s looking at you thinking oh look at him, wearing a mask, believing all this stuff that’s going on. So people are going to feel like oh, I’ll have to take my mask off cause I don’t want people thinking I believe it and I don’t want people thinking that I don’t believe. So you’re in that sort of position where you if you doing right you’re doing wrong and if you’re doing wrong you’re doing right. And that’s not right, that’s not fair, that’s not fair at all.

Erin: No and you know at the time that we’re kind of having this conversation for the podcast, we’re in the middle of our you know second national lockdown. How’s it felt kind of going back into that lockdown and you know what’s your approach been in terms of like tackling it with like coping mechanisms and you know how are you feeling about things at the moment?

Ben: You know what, it’s just, I know it sounds like flippant, but it is what it is. We just have to ride it out, we have to go through this one and then hopefully it happens. And we just have to keep…everyone needs to do the same as what everyone else is doing. Because if we all worked together then things become easier. If we start fighting against each other, it’s just going to drag on and drag on and drag on. And people are becoming a bit personal with this second lockdown and I don’t like that.

I don’t like the personal attack that people are doing to people who make these decisions, people in power, local mayors you know, people around whatever town you’re in or whatever city you’re in. People are attacking the people that have brought this lockdown like said the lockdown’s happening. They’re doing their job, it’s not you know, you can’t blame someone for doing their job. If they’re doing their job they’re doing it right, they’re not doing it for the sake of it or for the fun of it. They’re doing it because they think it’s the best thing to be done.

And then so that side of it does get frustrating, I try not to watch too much news, I said I stepped away from social media for a while, because this is just the platforms being used in a negative way rather than a positive way. And yet, don’t get me wrong there’s thousands of people out there that are trying to be positive about it, but there’s 10 people being positive, there’s 20 people being negative. And it’s just negative opinions and views and comments that are getting the better of the positive ones at the minute. And for me personally that was my way of coping with this.

Stepped away from social media, reading and writing stuff, I find it quite helpful for me to write things down, in my mind. So if I write things down on a book and page, write that page and I turn that page. Once I’ve written down, I might laugh and think that sounds a load of rubbish, it works for me. I’m not saying what works for me will work for another person, but as soon as I’ve wrote down what I’ve wrote down, I turn that page and that fresh page that’s got no writing on, that’s a new day for me. And that’s all I have to do now, keep going through this second lockdown, is just keep writing down and turning that page for a fresh page every day. And it doesn’t even have to make sense what you write down, just whatever thoughts are in your mind. Write it down, it’s out of your mind then, it’s on a piece of paper. You don’t look back on it, just write it down and turn it over. You start again the next day.

Erin: And with your kind of, you know, work with Crohn’s & Colitis UK on the campaigning side of things, what do you, you know, as you continue working with them, what do you really hope to kind of see change in the next few years?

Ben: Do you know what to be fair, I think the change from the campaign...this again this might sound like I’m constantly…so the positive side of social media, this is a prime example of what Crohn’s & Colitis have done. When I first started I was doing like cash collections you know at the Empire Theatre in Liverpool and if I want to be completely honest, I never thought I’d be doing something like that. But I was made up when I was doing it.

And obviously, more and more, when we were doing it people were coming over to me like we, we were standing right by the doors, people were coming over and talking to us. And we were talking…and that was just shaking a bucket, you know, for donations. And then I went and done a walk, like volunteered down in London, they walk it every year, obviously this year’s not been done, and they opened my mind again to a different thing. Because more and more people, you see everyone, when everyone’s together in that little community that we were in, it was brilliant. You, you wouldn’t, you can’t help but get dragged into it because the atmosphere and the people around.

The people in the organisation, they are amazing and when I say the organisation, I don’t just mean the people that run the organisation, but the people that were volunteering as well. We were all coming together and it’s like you did develop a friendship with a lot of people in there. And you look forward to the next time it was on because you’d see them again. And then the campaign people coming over to me, the campaign was brilliant, congratulating me on the campaign. I’ve never had no one congratulate me over my illness before, and it was like, it was quite a weird feeling at first. I was thinking wait I’m being thanked for having an illness and then you start to think you know what, it’s helping someone. And they’ll tell ya, it helped someone out, what was said about it in the article on your campaign, it was brilliant, it didn’t half connect with me or my brother, sister, uncle, auntie, mum, dad, it’s connected with them.

So the campaigns themselves like that, they are a massive, massive impact. And it’s, it can only get better. It can only get better. There’s more and more, it sounds weird but when you go to the toilet and you see the ‘Not Every Disability is Visible’ badge on the door, I take a look a that almost personally, because it’s like I was a part of that campaign. And that’s something to be proud of, that’s something I can say to my kids, look, you know, I was involved in this. You know I haven’t been able to tell, my kids haven’t been able to be proud of me for years because I’ve not been able to do nothing. But now they are, and it’s massive.

It is that, that’s the plus side that I love. That side, because it’s used in such a positive, empowering way. It’s like you’re sort of owning the illness and going right, we have got this illness, but this is, this is what good can come from it. And it’ll only get better, it will, there’ll be more and more campaigns the more and more you do. They’re always keeping it fresh and keeping things moving, rather than standing still. And you know and that’s what you need, you need a campaign and an organisation that’s not just going to sit down and go right we’ve done that, so we’ll just sit back and you know just soak it all up. No, they’re already thinking ahead!

Erin: I mean and yeah it is definitely something to be proud of. And I think you know sharing your story is giving a voice to a lot of other people and raising that awareness and building that community, and you know, actually making a tangible difference, which is really great to see. Thank you so much for joining us Ben and for sharing your story, we’ve really appreciated it.

Ben: No no no, thank you for letting me get my voice and my opinions across, it’s nice, it’s nice, it needs a bit more things like this.

Erin: Some really honest and powerful words there from Ben and an important reflection on how this year has affected people on an individual level, a lot of which I’m sure to many people is very relatable.

As we look ahead to 2021, I’d love to know what you think of the podcast and any ideas that you may have for future episodes. So please get in touch by emailing disabilitydownload@leonardcheshire.org or DMing us on Twitter or Instagram @LeonardCheshire.

And I just want to say thank you so much for listening to and supporting our podcast this year. We look forward to bringing you more exciting episodes and collaborations in 2021. Until then, stay safe everyone. I’m Erin and this has been The Disability Download.