[00:00:00] Sam: And I'd got to a place where I didn't think I was ever gonna feel better. This was just my life, and this is what it was like living my life.

[00:00:07] Alex: Welcome to Stories of Men Beneath the Surface. I'm Alex Melia. Join me as we discover what it means to be a man in the modern era.

It's no secret that for a lot of men, going to the doctors mentally can seem like a huge ordeal. A lot of us have it ingrained in us from an early age that we need to have a stiff upper lip or to keep calm and carry on. But in reality, particularly with our health, this is rarely a good idea. Sam was 27 when he was asked to fly out to New York with work.

It was his first time visiting the country and he was unsurprisingly excited to explore a city with so much on offer. But as Sam was experiencing more and more, those moments in his life that were supposed to be filled with enjoyment, were coming at a costly and sometimes embarrassing price.

[00:01:07] Sam: After I landed in New York. I had a couple of hours essentially, that I needed to stay awake as late as I could, so I needed to try and beat jet lag if possible. And I had limited amount of time to see some friends who I'd never met physically, but I knew through an online forum discussing retro nineties.

Point and click Adventure Games. It's a really, really specific corner of the internet. So we went to, um, this hotdog spot, which I continue to recommend to people Going to New York Craft Dogs is, uh, the kind of place that you wouldn't take somebody that you liked to get food unless you knew you knew about it.

I remember kind of hearing the, kind of the neon buzz of, you know, one of those like Blue Fly killer things that slightly dingy, uh, first Food places have. I remember it being really busy and really high pressure, but absolutely jam packed full of people waiting for their hot dogs. Got two hotdog with stripes and mustard, ketchup on top, and they came really, really tightly wrapped in tinfoil.

That was damp on the outside. And that absolutely, by a long way, the best hotdogs I've ever had in my life. Like I'm not, I am not gonna, I'm not gonna dispute grift dog's reputation as the best hotdogs in New York. It was great. Two or three beers in quite a lot of food. Late into the evening, your eyes kind of start to cross and I realized that I had reached my li van.

It was probably about 9:00 PM sharing an Airbnb with my colleague. Got got back to the Airbnb. Felt like I needed to use the bathroom. Go, go into the bathroom slide the rickety door shut, that kind of cramps. It's, it's sort of like feeling like you've got food poisoning. I think food poisoning. You kind of, you use the bathroom and it feels like relief and this is like those feelings, but you don't get any relief.

You just feel worse and worse and worse. Came out the bathroom, lie on bed, try and fall asleep, but then still feel like you need to use the bathroom again. So go back in and sit there and think about what's coming up in the week and that I've gotta be. In meetings and meet new people and work with my colleague who I was also worrying about, you know, can she hear me going in and out the bathroom and flushing the toilet and all this stuff.

And you kind of fully go into over analysis, paranoia mode of an endless loop of those feelings and, and kind of not getting any relief from those.

[00:03:46] Alex: So from that experience, Sam, from being in New York, first time in America. I'm sure you had a, a great experience overall despite some of the health concerns that you had or some of the, the, the situations that you were in. Was that a big turning point for you to realize that you had a health problem, that you needed to sort

[00:04:03] Sam: out?

It was a, a probably a low point, but, um, I was, I was so entrenched in my own kind of, World where I'd, I'd, I'd, I knew that this was my fault and I knew that I didn't wanna talk to anybody about it, and I knew that it, it didn't feel like telling anybody or doing anything about it would make any difference.

So it just

[00:04:27] Alex: basically just continues on, on

[00:04:29] Sam: and on and on. Yeah. So I mean, that was 2016, uh, and it was 2020 when I. Uh, ended up in hospital. Can

[00:04:41] Alex: you say what, what happened in hospital and what you'd been diagnosed with? In the

[00:04:46] Sam: middle of I think two lockdowns, I was having, uh, one of these awful nights. My wife had just had a little girl and I, I'd got to the point where I was in so much pain pretty much constantly.

I couldn't pick my little girl up. Uh, I was in bed pretty much all day, all night. Uh, I. Wade, seven or eight stone. I'm six one and uh, I eventually called. This is very, very telling, but I called 1 1 1, not the emergency number. I called 1 1 1, um, and got a. Outpatients appointment with the doctor first thing the next morning, cuz the options were go to a and e or go and see a doctor first thing the next morning.

And, uh, went to see the doctor first thing on a Sunday morning, uh, in St. George's hospital. And, uh, she kind of looked, looked at me. I was very, very skinny and she took some blood and she took some measurements and then she started talking really, uh, slowly and really deliberately in the way that she was talking to me.

And you're kind of, I dunno, there's like an instinct that kind of switches on where you're like, I know that you're doing something weird. I know that something's going on, but I dunno what it is because I haven't really told you much. I haven't told you anything about my situation or my circumstances.

So I don't know what you could possibly be thinking. So I, I, I remember I said, what's go, why are you, what's going on? You asked. So she was actually asked, started asking me questions about where I went to university and, and all this stuff. And I said, why are you asking me these things? And she said, oh, um, I'm trying to, I'm trying to keep you conscious.

You are about to pass out. And I, I was like, I'm not, I know I'm not gonna pass out. I'm absolutely fine. She said, well, your heart rate is like 190. You should be, you should be about to pass out. And it turns out the reason my heart rate was that high was cuz I was fighting an infection. I was fighting sepsis.

I, uh, had a perforation in my intestine from 16 years of inflammation, and, uh, that is not good. Having a hole in your small intestine, your body does not know how to deal with that. If you spent any time in hospital, there's, you'll, you'll, you'll know there's quite a lot of posters warning about the signs of sepsis and what having sepsis means and how long you have to stay alive if you have sepsis, and it's, I was.

Pretty much 24 hours left on the clock. So if you think like, where I was in 2016, I'd, I'd used every last second of my time before it was very close to being too late before I even came close to dealing with it.

[00:07:26] Alex: At what point did the, the doctors, the nurses say that you've, you know, what your, what your actual condition is?

[00:07:34] Sam: That came quite a lot later. Um, it was in the, so I was in hospital for 12 days in total. But, um, the Crohn's disease is quite a hard thing to diagnose. So I was eventually diagnosed with Crohn's disease, but it's, uh, quite an invasive thing to diagnose. You have to take samples and do colonoscopies and MRIs and all kinds of things.

And the state, physically I was in. So I, as I said, I weighed 49 kilograms. I didn't have a single ounce of body fat on me. And you have to be a certain amount of healthiness to deal with those invasive things. So I was kind of diagnosed by elimination of, here are the things that you could have that could cause this.

And they were right. You know, I did have Crohn's disease and they know they're, they're smart people, those doctors. So they, you know, they knew what they were looking for. But, um, I, I, I didn't know what Crohn's disease was. Um, at that point. It's one of those things that I guess you maybe hear about or you know, that some people have or whatever, but you kind of don't ever look up or think about or whatever until, until it's happening to you.

[00:08:37] Alex: It seems like from a lot of the men I've spoken to, and I think it's the same in your case, how we let something happen for so many years, and it's only at the point at which it's got really bad. That we actually do anything about it. Even when you were going through the situation on the bathroom for many hours in New York, it wasn't enough of a crisis for you to act.

It's only at that point where you get down to seven stone, 49 kilos and you are, you're having all of these sort of symptoms and these issues where you, where you're at breaking point basically. And that's when you find out that you've got Crohn's after 16 years, which is a long time.

[00:09:17] Sam: So the, so the, the doctor's kind of estimate that I had lived with this, this with Crohn's disease for 16 years, kind of based on the level of scarring that was in my system that they could see and that tunies up with how completely enmeshed these symptoms and these feelings were with just kind of my daily experience, the way that I went through my life.

So it was, I was totally used to, uh, feeling like this. Lying to my friends about why I couldn't come out and see them or make it to certain events or why I was feeling down or whatever. I didn't even kind of think that I was avoiding getting help, if you know what I mean. I was, it just, it wasn't a thing that anybody was ever gonna deal with apart from me.

Mm-hmm. And

[00:10:00] Alex: it's about keeping up the, the pretense sometimes with our friends, isn't it? Because I've talked in a previous episode how I'd. Had an anal fisher for probably about five or six years and didn't deal with it, and I'd make up these, these stories about going to the bathroom because I needed. I needed a we again.

But, uh, my friends would say, you, you went 10 minutes ago. What's wrong with you? But actually, I would just go again, just because I wanted to, to itch myself because it was just unbearably uncomfortable. It was just so itchy. So you just can't start to concoct. Craft these stories that are just not true and it seems like you were doing the same thing in your situation.

What sort of stories did you kind of make up to friends?

[00:10:42] Sam: If I'd been up all night and not able to sleep and awake until four feeling like this and then was due to meet people the next day or whatever and just couldn't, I think I would convince myself that the things that I were feeling were like anxiety about the situation the next day or like depression or, or those things and.

Those, almost those things almost have become, at least they were to me, like acceptable ways to talk about how I was feeling. They were also never questioned. You know, you kind of find ways of saying, oh, I'm not coming. Don't ask me any questions, and I just got really good at it. That's not to say that this, you know, the way that I was feeling and the things that I were going through didn't have huge negative impacts on my mental health,

[00:11:28] Alex: but mm-hmm.

You said you got really good at it. How, how so?

[00:11:33] Sam: The only way I can talk about so describe it, is that it worked. You know, the only person that really knew that there was something definitely wrong was my wife because she lived

[00:11:41] Alex: with me. So you are, you are keeping this secret for years and not necessarily a secret, but you know there's something wrong.

You don't do anything about it. I mean, at this stage you don't even know you've got Crohn's. You know, you know there's a problem and you know that you are covering it up. But what is it that you are really scared about? About if people find out.

[00:12:04] Sam: I think it was kind of analyzing it after the fact. I think I was worried that people were gonna know that I had spoken in one particular way about how men should act and, and deal with their own issues.

And I'd acted in a very different way and kind of knowing that, knowing that my kind of sense of self and my own masculinity was this version that people knew. I mean, I just felt like it was gonna be. Embarrassing, shameful. You know, people were gonna know that I'd just hidden this thing and didn't really matter.

That I'd been, been outwardly encouraging of people because that's not who I, that's not what I was living really.

[00:12:44] Alex: I think for me, I was trying to fit in. I didn't want to be different. I wanted to be normal, whatever that is. And just the same as everybody else. You don't even think to yourself, I'm gonna tell people I've got.

This medical condition, you just, yeah. It's not even something you even contemplate. You just continue crafting these stories or these excuses, uh, to make sure, to make people think that everything's

[00:13:09] Sam: okay. I think I also had convinced myself that whatever was happening was my fault. If I told somebody about it, they'd be like, well, you change this thing about yourself or change this thing about the way that you are and it'll get fixed.

Or if I went to see a doctor, they'd be like, well, you need to change this, or, this is your diet, or whatever. This is, you are, you know, you are doing this and just adds to a compounding sense of shame about this thing. You know, you are, you feel like you're doing it to yourself. The symptoms are essentially bathroom based and I'm not even gonna go into the years of learned shame that we have around that.

But it sounds like you know what I'm talking about, and you just kind of have all of these different reasons that it's just, I'm not gonna. I'm not gonna let this thing be part of the definition of who I am.

[00:13:57] Alex: I think it's really interesting when you're talking about identity and no one really wants to have a condition or a disease wrapped around their identity.

So I think that's a really in, that's a really interesting one to kind of explore, isn't it? Because you didn't want to have Crohn's as part of your identity, something that you're living with, but it's not who Sam is as a person, as a man.

[00:14:17] Sam: You know, I don't want, I'm not out there looking for sympathy for this thing that's happening to me or that I live with, but it does, it does have impacts on my life and the lives of people around me.

That is kind of undeniable. You know, I'm on good, I'm on good treatment, and I look after myself a little bit better nowadays and all of those things, and I'm lucky. After

[00:14:38] Alex: 16 years of having this condition and not knowing about it and then finally knowing about it, was it a relief? Because I remember for me, after having this anal fisher for five or six years, as soon as I got this sorted out and actually went to see a doctor, I just felt a lot better about it, like a weight had been lifted.

Was it the same for you?

[00:15:00] Sam: Yeah, it was an enormous relief. I kind of got the news that I had been dreading, but. In getting that news, it kind of releases this, you know, all of this stuff that you've either knowingly or unknowingly pent up about yourself for 16 years. And then I had this diagnosis and I didn't just have a diagnosis.

I had like a team of doctors and dieticians and all these people that were telling me, here are the ways that you are gonna feel better. And I'd got to a place where I didn't think I was ever gonna feel better. This was just my life and this is what it was like living my life. And. Now I'm able to enjoy all of the things that kind of I was wanting to enjoy and missing, and it is literally, Because I was forced to get help.

Forget, help or die. Those are the options.

[00:15:55] Alex: There's a lot of empathy in having an especially embarrassing condition such as this. It's a private area for us and not something that we would generally want to talk about, and we want to keep it private, of course. There's a real loss of control associated with it, and it hits our idea of our masculinity and what it means to be a man.

How would it feel to have to deal with a condition like this? I wonder David had avoidant tendencies as he knew he had a problem. Perhaps more awareness needs to be raised around Crohn's, and you were allowed from college who had Crohn's, and unsurprisingly, he kept it quiet for a long time. This was 20 years ago.

I remember as well, he'd been beaten up in a nightclub by bouncers. It was an unprovoked attack and it made his Crohn's condition even worse. He was embarrassed about wearing a colostomy bag, and it took him time to come to terms with this as it would for anyone really. Sam becoming a father highlighted his own health and how he needed to take better care of it.

I wonder if this has changed his perspective on things. I imagine that your risk assessment from becoming a father would decrease as you now have responsibility for another human being aside from yourself for the very first time in your life nowadays, you have a question to ask yourself. Perhaps as a father, do you really want to take the risk of doing those daredevil, adrenaline rush activities that perhaps you did when you were in your teens or in your twenties?

Some still would go ahead with it. From what my mates have said about having kids, it impacts even the smallest decisions that you make on a day-to-day basis. And it could be even as small as walking across the road on a red light. I don't have stats around the appetite for men in going to the doctor for embarrassing issues and how long men take to go to the doctor.

Once they realize something's wrong, but an area linked with this is increasing numbers of men going to therapy. I'm currently having counseling sessions myself three to four times a week, and I've successfully recommended mates to go to a therapist too. There's a real willingness to discuss mental health matters nowadays.

We must increase the awareness around men overcoming their objections of going to the doctor and feeling like there's nothing wrong with them and make a change. Think of how many issues like Crohn's could be helped a lot earlier. And how many lives could be saved with cancer too.