Latest / Crohn's & Colitis Unfiltered / Two diagnoses, one voice: Mason’s life with Crohn’s and autism

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Two diagnoses, one voice: Mason’s life with Crohn’s and autism · Crohn's & Colitis Unfiltered

0:00
I think seeing like other people that have it
0:07
too I think that helps because like I knew no
0:12
one I said I didn't know anyone so that's kind
0:16
of helped with autism I'd known for a while so
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that's a bit different but with Crohn's I never
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heard of it I've joined a few things to meet
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other people so it's nice like hearing other
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people On today's episode of the Colitis Unfiltered
0:34
podcast, I am speaking with Mason from London.
0:37
Mason was diagnosed with Crohn's disease and
0:40
autism. And on today's show, he's going to talk
0:43
to us about both of those journeys. Mason, welcome
0:46
to the show. Hi Frank, it's great to be on the
0:49
show. So Mason, let's start at the beginning,
0:52
which is diagnosis. When were you originally
0:55
diagnosed with Crohn's and when were you diagnosed
0:58
with autism? I was diagnosed with Crohn's in
1:02
2017, around October time. So it wasn't a very
1:05
good Halloween. And autism around 2009. And I
1:09
was nine. Let's start with the latter one, Crohn's
1:13
disease. How did it start? What were your first
1:17
symptoms? You know, what happened that made you
1:20
think, okay, something is really wrong here.
1:22
And I have to have this looked at a little bit
1:25
more closely. For me, it was the pain. So like
1:28
the really bad. abdominal pain in my stomach
1:31
area and to me the best way to explain it it
1:34
just feels like you're getting like hit over
1:37
and over again so that that was the initial signs
1:40
for me but um family members at the time because
1:45
I was around like 17 turning turning 17 so I
1:50
was young so I was none the wiser of what was
1:53
happening um but family members say and You can
1:58
see in pictures that I lost a lot of weight that
2:00
year, like throughout the month. So it was probably
2:02
going on a little while. And then towards that
2:05
October, I was struggling eating. So I couldn't
2:08
eat anything. Every time I ate, I was in pain.
2:11
Every time I didn't eat, I was in pain. So it
2:14
was tough. So yeah, I'd say those were the two
2:17
major ones. And early on into your diagnosis
2:21
with Crohn's, how did... you know, doctors, teachers,
2:25
family members react to it? You know, did you
2:28
feel understood, supported? How was, what was
2:32
life like for you in the beginning? It was tough
2:35
because I'd never heard of Crohn's before. And
2:40
I knew no one who had Crohn's before at the time.
2:45
I think when I was diagnosed, no one knew anything.
2:50
Like no family members knew anything because
2:52
sometimes you... In some cases of Crohn's, it
2:55
goes in the family, doesn't it? But for my case,
2:58
it doesn't. But for me, no one knew. So it was
3:03
a tough start because I went in. How I got diagnosed
3:08
was a colonoscopy. I went for that. And then
3:12
during the colonoscopy, I hear the consultant
3:15
say, you've got Crohn's. So I go out. I am sedated,
3:19
but I can still hear. I go out and I say to my
3:21
family, I say to my... My mum and dad, I say,
3:24
I've got Crohn's. No idea what Crohn's is, but
3:26
I've just heard they say I've got Crohn's. And
3:28
then I weren't hearing things because the consultant
3:30
comes out and say you've got Crohn's. And I think
3:33
the hardest thing was, wasn't the diagnosis itself,
3:37
although that is hard, but it is the after effects
3:40
of having Crohn's. Like, and I still hear people
3:45
today that have a similar experience. Like, so
3:50
basically they would give me a leaflet. about
3:53
Crohn's and then send me home. And then there'd
3:56
be an appointment in a few weeks for maybe what
3:58
medication I might start. So I think that's the
4:02
hardest part at the start, really, for me. And
4:07
since the diagnosis, what treatments have you
4:11
been on and how are you managing Crohn's right
4:14
now? I started on steroids to reduce the pain
4:19
that I talked about first off. And then... after
4:23
a while it it it lowed down like that i didn't
4:27
have any of the pain anymore um so then i was
4:31
on steroids and then i was on uh i still to this
4:35
day first um medication was um at a fire print
4:40
and i'm still on as a fire print now um i always
4:43
take that every morning um vitamin d i have vitamin
4:49
d every every night um because i really struggle
4:52
with fatigue um b12 i used to have the injections
4:57
before um covid but i don't anymore i had about
5:02
three injections and then they're just tablet
5:05
forms now for me so i have that but then the
5:08
first um infusion i had was an infliximab it
5:12
was called and with infliximab i had it for like
5:17
a year and then i was going on for my 10th infusion
5:21
and then I thought it's surely the 10th one's
5:25
gonna be okay 10 is for good luck right it wasn't
5:28
good luck at all so I had the most awful reaction
5:32
to it um that day it was really bad um like I
5:38
mean my dad used to go with me to the infusions
5:42
because I wouldn't want to go in mine so in in
5:45
my ward there was lots of older people than me
5:49
so like because They would treat other people
5:53
with an infusion. Like if they had cancer or
5:55
other conditions. So it wasn't just Crohn's and
5:58
IBD. It was nice though. You get to talk to them.
6:01
But at the same time. I do want people my own
6:04
age to talk to. But there was the odd person
6:07
that you talked to there. So this one day. So
6:10
when you have your infusion. You have your prep.
6:12
So you know your loading dose. And that takes
6:15
about 10 to 15 minutes. And because I did so
6:19
well with the infusion. each time would go a
6:22
bit faster, right? Because you're so used to
6:25
having it every six weeks I went. And the loading
6:31
dose went wrong. So my dad popped out to have
6:36
some fresh air at this point. So he comes back
6:40
and says, what's going on? What happened was
6:44
I struggled to breathe. I needed oxygen. And
6:48
then the cannula felt, to me, like it was going
6:51
to burst. So it all went wrong with that loading
6:54
dose. So what they had to do was ring my consultant
6:57
and ask him, are you going to continue this infusion?
7:00
Are we going to stop? So basically, we resumed
7:05
it, but very slowly. So I was there hours. I
7:08
was literally there the whole day. And then we
7:11
had the meeting with my consultant. Of course,
7:18
we changed the medication. So we changed it to
7:21
injections. It wasn't infusions. It was Hemira.
7:26
Now it's Hemira. The complicated words of adenomab
7:30
in medication terms. So I've been on that ever
7:34
since. But the funny thing is, when I first got
7:38
diagnosed with Crohn's and we had that meeting
7:41
to go for the infusion, I suggested that I didn't
7:46
want to. go for the Humira first because that's
7:49
what was advised to me to go for the Humira first
7:52
and the reason was is because I only was diagnosed
7:54
I didn't know much about Crohn's myself and I
7:57
wanted to be in the hospital so they can like
8:00
see me for the first like months of my diagnosis
8:05
as Crohn's so I wanted to be there so it went
8:10
wrong but I'm on Humira now and My actual next
8:15
injection is next week. So I have that once a
8:19
week. I used to have it fortnightly. But because
8:22
my levels for crones went up. I had to be moved
8:25
for weekly. Which isn't the best. But I have
8:29
it at home now. So I don't have to go in. It's
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simple. You were diagnosed at 17 with Crohn's.
8:35
That was your teenage years still, and it must
8:38
have been pretty difficult to navigate IBD. At
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the same time, you're also navigating autism.
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So tell me, you know, especially around the diagnosis
8:46
of Crohn's, you know, the last years of the teenage
8:48
years for you, how did autism and Crohn's interact
8:52
in your day -to -day life? I guess because sometimes
8:56
with my autism, I struggle to kind of understand
8:59
things. So maybe with Crohn's, it's quite complex
9:03
with like everything you're told by consultants,
9:07
by doctors. So, yeah, I often need help to kind
9:12
of, I often need an adult there with me to kind
9:15
of understand what's happening. Like maybe I
9:20
can get taken out of a room if it's too much
9:22
for me. So, yeah, it's really tough because I
9:25
don't think a lot of doctors and consultants
9:28
in general. We'll understand that part. We'll
9:33
understand like the autism part. That they just
9:37
care about the Crohn's part. Because I always
9:40
remember once my consultant asked me how I'm
9:43
doing. And I wasn't doing okay like with my Crohn's.
9:48
And I thought that's what he... I think within
9:50
myself I was saying like I took it like that.
9:54
But he meant the Crohn's. So he didn't mean like
9:57
in general. So, yeah. And sometimes what people
10:04
say, I might take it a bit literally or take
10:09
offence to it. So it's hard sometimes. I think
10:11
that part of autism. But in general, with my
10:17
autism, there is like difficulties within that
10:22
itself. But sometimes they interwine. I've met
10:25
a few people that have both as well. It's rare.
10:27
Not many people do. have autism and Crohn's.
10:31
Sometimes it's been also for colitis and autism
10:34
as well. So it's not often you get people. But
10:42
I think it is becoming more common than not now.
10:47
So some challenges. especially with the two conditions
10:51
they're living with. Let's go back a little bit
10:54
in terms and talk about your school experience,
10:57
right? And you started off in mainstream school
10:59
and I would love to see what kind of like, I
11:01
would love to understand what kind of the biggest
11:03
challenges that you faced there, both physically
11:05
and socially. When I first went to mainstream
11:09
school, I wasn't looking forward to it because
11:12
when you would leave primary school, You would
11:18
normally have around a few friends that are going
11:21
to the same school. I had two, but one of the
11:26
friends wasn't in my calls, and then the other
11:28
one, he didn't like me. He didn't like me, so
11:32
I was having to make new friends regardless.
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And I don't know why he didn't like me. I mean,
11:39
I'm quite nice, so I didn't know. But the difficult
11:46
part of the mainstream was the teachers. I think
11:49
most of them just presume if you don't speak,
11:54
you know what you're doing. And I think that's
11:56
the problem. So when I eventually left, I didn't
12:00
tell anyone. I only told, what was it, the people
12:03
I had to tell. I didn't go out my way to tell
12:06
people. But then on that last day, I had teachers
12:09
come up to me. Why didn't you tell me? Why didn't
12:11
you tell me? I said, I didn't tell you because...
12:14
i can't wait to leave but the difficulties of
12:18
it was like the understanding like even that
12:22
there was a group where you would go if you had
12:25
autism or adhd or any like any special needs
12:29
but even then a teacher in there didn't didn't
12:34
understand and it's annoying because because
12:36
i find if you're a good student you get picked
12:39
on a lot more than maybe the more disruptive
12:42
people. And I've always thought that's not right
12:46
because I always... If you want to put your hand
12:50
up, you can, and sometimes it's overwhelming.
12:54
So that's one of the parts. Another part of the
12:57
mainstream was how I get lost quite a lot. And
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I remember... I did ask anyone. I don't ask anyone
13:05
because I don't want to, like... I don't know,
13:09
I just wasn't confident at that point. But a
13:12
teacher came up to me once and he said to me,
13:13
do you need help? And I was like, he's asking
13:19
me where I've got to go and I couldn't remember
13:20
where I needed to go and he was getting annoyed
13:22
with me. And also, one other point is that, you
13:29
know like the ties that you wear when you're
13:31
at school, the clip -on ones. I really struggled
13:35
to put them on. So I'd always ask the teacher
13:38
Like I asked a drama teacher a few times just
13:42
I'm not allowed. What do you mean? You're not
13:43
allowed. I've never heard I've never heard a
13:46
load of rubbish that you're not allowed to help
13:47
someone to put their tie on and Basically once
13:51
I ran like a teacher, but there's a teacher standing
13:54
outside the gate and he he wanted me to Put it
13:58
on even though I couldn't do it. I said I couldn't
14:00
do it. So basically I just run away I ran in
14:03
the car and I said something like, go, go, go.
14:06
But it shouldn't be that way. It shouldn't be
14:09
that way. And then one final point I'll say about
14:12
mainstream school is that this was a joke, but
14:16
sometimes the tone of your voice can mean you're
14:20
not joking. So basically they said, you've got
14:23
to get changed in the PE room for five, you've
14:26
got five seconds, otherwise you'll be locked
14:27
in. So, there's me thinking, like, because my
14:31
autism take and think literally sometimes. And
14:33
back then especially, not so much now. I'm quite
14:38
a sarcastic person now. I have to be with Crohn's,
14:40
you've got to be. But back then I wasn't. I wasn't.
14:44
And I was very serious. So, when he was saying
14:46
that, I was getting changed really, really fast.
14:49
I signed up to Hedgehog. And then I was racing
14:51
outside with some of my clothes on, some of them
14:54
not. And it's hard. there's like I'm joking but
14:59
yeah I was glad to leave that so yeah I have
15:03
the experience of that and like special education
15:07
as well but yeah that I was glad and all that
15:11
right only a year only a year I was there so
15:16
a lot happened in a year a lot of difficulties
15:18
that you just touched on Eventually, you decided
15:20
to leave mainstream school and enroll in specialist
15:23
school. What was that transition like for you?
15:27
It was difficult because I was a new kid. I was
15:33
a new kid and not many people... They weren't
15:36
very nice, the students at the start. And I thought,
15:39
is this going to be worse? It's going to be worse
15:42
than the mainstream. It wasn't. It wasn't eventually,
15:45
but... there was a lot of change because the
15:47
main sorry the specialist school I went to is
15:52
um like they they that they were in this school
15:56
but they they moved to another school so they
15:59
were waiting on the new they were building a
16:02
new school so basically I was like in three different
16:05
buildings at one stage of this school but I think
16:09
I I really enjoyed it um at the start I did make
16:14
a lot more friends there. And then in the end,
16:16
I always looked up on, which was quite nice towards
16:19
the end. And that was the school I got diagnosed
16:22
with Crohn's. That was the school as well. So
16:27
you mentioned that in mainstream school, you
16:29
know, teachers sort of struggled a little bit
16:32
to understand your autism. Obviously, in specialist
16:36
school, you found yourself in a more supportive
16:38
environment. What about the teachers there? Were
16:43
they fully understanding? And especially also
16:45
after you were diagnosed with Crohn's, did they
16:48
accommodate you? In what ways did they accommodate
16:51
you? And in what ways did you feel more comfortable
16:53
with your teachers in specialist school versus
16:56
the mainstream? I definitely felt more comfortable
16:59
because it was a less hectic environment. It's
17:03
easy to find your classes. It's very nice compared
17:06
to mainstream. Yeah, there was teachers I would
17:10
go to. There was one teacher. who was my tutor
17:14
for two years in like year 10 year 10 and year
17:17
11 when I was diagnosed she was very nice but
17:20
there were some other teachers I didn't like
17:22
so um I didn't like everyone there um and at
17:28
one stage so at school they would at lunchtime
17:32
they would call different classes in for lunch
17:36
right and at this point this wasn't when I was
17:40
diagnosed with Crohn's I think it was a year
17:42
or two earlier. And I ultimately thought, because
17:46
we're doing exams, I thought I could have my
17:49
lunch earlier. So the art teacher it was, because
17:53
we were doing art exams all day, they said, go
17:56
have some lunch. So I took that literally, went
17:59
in and had my lunch, right? And I had these staff
18:03
members come up to me and saying, why are you
18:04
in here? And I said, I got asked to go to lunch.
18:07
That's what I thought, I got asked. And then
18:09
it turns out I was wrong. And then I was hassled
18:15
around by 50 questions by all these other teachers.
18:18
And then eventually towards that, that was just
18:21
miscommunication from people on their end. So
18:25
it ended up on... I think that in particular...
18:30
And there were some other instances that certain
18:34
teachers didn't understand. So eventually I got
18:36
some autism training for the teachers. And to
18:40
this day, I don't know if I did or not, but I
18:43
hope so. But yeah, so just because it's the main,
18:47
sorry, a special school doesn't mean it's perfect.
18:51
I will say it's better. It is, it's really better
18:54
than the mainstream, but then it's not all like
18:58
perfect. Like you'll go to some teachers and
19:02
they'll be your favourites and you can talk to
19:06
it like, like. There were some instances where
19:09
I was that confident at this stage. After Crohn's,
19:13
I was a more confident person. Because I thought,
19:15
what's the point? I want to be more confident
19:18
in myself and in my autism. So I feel like I
19:21
was so against my autism before I was diagnosed
19:24
with my Crohn's. So it made me more confident.
19:29
My Crohn's made my autism more confident. Which
19:33
was good. That was really good. So, one... I
19:37
always laugh at this. I always laugh. So, basically,
19:40
I got a detention for not bringing a pencil case
19:43
to a science. But we never used the pencil case.
19:49
We was on the computers. So, I went to the detention,
19:54
but I had a conversation with the science teacher
19:58
and I said, why am I in the detention? We didn't
20:01
even use the laptops. And then... They said,
20:04
well, you should always bring a pencil case anyway.
20:06
And I said, yeah, fair enough, okay. But I would
20:09
have gone to detention for that reason. But the
20:11
thing was, someone else had done the exactly
20:14
same to me, but they'd give him a pencil. So
20:17
I don't think that is right. So we had a conversation
20:21
around that. And then they were like, I'm not
20:23
going to give you one anyway. So it's silly.
20:25
Instants like that, that's what I didn't like
20:28
at the school. So clearly with the autism, you
20:31
were forced to meet. certain adaptations in your
20:35
life, your lifestyle. With Crohn's, in what ways
20:40
did that disease force you to change your daily
20:45
routine or your lifestyle? Maybe like what I
20:49
had to eat probably has changed. Not so much
20:54
now, but at the start it did. I lived on chicken
20:59
for a while because that's all I could kind of
21:02
eat. Spicy like chili sauce. I loved chili sauce.
21:08
So like every once in a while if I got a kebab
21:10
get a chili sauce and I was one of those people
21:13
that put it everywhere and like the feeling of
21:15
having water every five seconds. But I can't
21:19
have that now. So I can have it but not all over.
21:23
I make those changes especially like with the
21:27
medication I take it makes me very vulnerable
21:30
and not everyone understands it. Some people
21:34
might be like, oh, you're just saying that again,
21:36
or you get bored. But it's serious, right? And,
21:39
like, I have to avoid things. Like, in the winter,
21:42
I hibernate. I hibernate because I don't want
21:45
to catch things, really, and catch infections.
21:49
Because a lot of the human race don't care. Like,
21:53
they're selfish. Like, you'll go out, and then
21:56
a person will sneeze, not putting their hands
21:58
in their mouth. People don't wash their hands.
22:02
Like, you go up the escalators in the shopping
22:05
centres and see if people put their hands around
22:07
it. I mean, I fell down the escalators once.
22:10
I don't like the escalators, but you've got people
22:14
put their hands on it and it's filthy. It's one
22:19
of the dirtiest surfaces probably around. So,
22:24
yeah, I have to be careful. And, I mean, I still
22:29
do things. I have to, but just more carefully.
22:32
That makes perfect sense. And you just talked
22:34
about some of the physical changes or dietary
22:39
changes, but how has living with Crohn's and
22:43
autism at the same time impacted your mental
22:47
health compared also to when you were, I mean,
22:52
before your diagnosis with Crohn's? Yeah, I think
22:55
for me, I just get on with it. I don't really
23:00
worry about how it affects me. Daily. Unless
23:03
something tragic happens. But I'll be careful
23:06
what I do. Like go out for walks every day. Be
23:10
like. There's Easter coming up so. I'm okay.
23:14
I can eat chocolate. I know some people can't.
23:17
But I'm glad I can. Yeah I'm okay. And I think.
23:20
When. What. I've always said. From day one. Since
23:23
I had Crohn's. The two fears I've always had.
23:25
Are having surgery. I've never had surgery. With
23:28
my Crohn's. I have in the past. But that. That's
23:31
something to do with Crohn's or autism. And a
23:34
stoma bag. I always love seeing people how they
23:38
post it on Instagram. I don't think I could.
23:42
If I ever got one, I think that would be a long
23:44
confidence thing for me to even do that. But
23:47
that's another fear I have of my Crohn's. And
23:50
I've always said it from day one. I'll try and
23:53
get every other thing first. And that will be
23:58
my last resort. No, no, absolutely. Totally understand.
24:01
I'm the same. I always said that surgery would
24:04
really be the very last resort and I'm definitely
24:06
not going to stop fighting and do my part as
24:09
much as I can until the very end. So luckily
24:11
I found a treatment that works right now. So
24:13
that's what I'm focusing on. And, you know, for
24:16
those of us who are in medication that works,
24:20
we sort of, we always go with the flow, obviously,
24:25
and hope that, you know, we find a treatment
24:28
that works. keeps working. So you talked about
24:33
having hard times sometimes. And when things
24:38
are hard in life, we are supposed to deal with
24:41
it. We're supposed to live with it. We're supposed
24:44
to fight through it. And for some of us, it's
24:46
easier. For others, it's a little bit harder.
24:49
You're dealing with IBD. You're dealing with
24:51
autism. What has helped you build confidence
24:56
and resilience throughout this journey? I think
25:00
seeing other people that have it too. I think
25:04
that helps because I knew no one. I said I didn't
25:11
know anyone. So that's kind of helped. With autism,
25:14
I'd known for a while. So that's a bit different.
25:17
But with Crohn's, I never heard of it. I've joined
25:22
a few things to meet other people. So it's nice
25:25
hearing other people. have maybe similar medication
25:28
than you and not not mainly it's like people
25:32
over here speaking to other people in other countries
25:33
as well um how it's different like we have an
25:37
and we have the nhs other countries have to pay
25:41
for their own stuff so kind of glad that we don't
25:44
have to do that over here so and i think in other
25:46
countries that they're all surprised that we
25:49
we stay awake during like colonoscopies and stuff
25:52
they go to sleep so it's really interesting like
25:55
Learning about the different kind of things,
25:57
like what we have, but it's different. So basically
26:02
sharing experiences or hearing other people's
26:04
experience then gives you sort of the motivation
26:07
and the courage to keep fighting. Yeah, yeah.
26:11
When someone checks out your social media profiles,
26:14
they see that you're very active. You post a
26:16
lot about your experiences. I mean, you join
26:19
a lot of podcasts. You're very outspoken, which
26:22
basically means you found your voice and advocacy.
26:26
What made you want to speak openly about Crohn's
26:29
and autism in the first place? How did you decide
26:32
or when did you decide and why did you decide
26:33
to really speak up and share your experiences
26:36
with the world? I don't want people to go through
26:40
maybe like what I've gone through with autism
26:43
first. I joined these meetings to try and like
26:47
help people. So like I'm an ambassador for the
26:50
Multiscore Council and that is an organization
26:52
that helps people who are on the spectrum. they
26:56
have autism, ADHD, and what they do is that they
26:59
go to different schools. I don't do it specifically,
27:02
but there's people that go to different schools
27:05
and they try and help them. The one thing I always
27:08
say, I always think this has to happen, and it
27:12
happens in some schools, but not every single
27:14
one. I think it should. So what should happen
27:16
is schools shouldn't put a table for everyone
27:20
that has autism or ADHD on the spectrum. They
27:23
should spread them out. Because I think they
27:25
do that to make it easier for the staff to help
27:28
them. But it actually targets them. It actually
27:31
targets them for bullying. It targets them for
27:34
a lot of things. Because the people who maybe
27:37
are not on the spectrum and they're not needing
27:39
that additional support, they feel left out and
27:42
they feel they're not getting the help that they
27:44
need to. I think that needs to change. That's
27:46
the same thing with crimes, but a bit different.
27:48
I share my story to help people. And sometimes
27:54
I love talking to people who don't have a clue
27:57
what Crohn's is. I think that's the best way.
28:01
Like, I kind of mix it in with my hobbies. So,
28:04
like, once I had... I like Doctor Who. So I had
28:09
a doctor from Doctor Who on my podcast a few
28:11
years ago. And I met him. I went to a Comic -Con.
28:15
I wore a mask. He didn't understand why I wore
28:17
one. So on the podcast, I explained to him why.
28:21
And he was really educated. He's really interested
28:23
in it. So I feel like if we talk about it to
28:26
people that don't know it as well, it's a really
28:28
good talk about the people who have it. But if
28:31
you talk to people who don't have it as well,
28:33
they're just teaching someone something new they
28:36
didn't know. Well, that's really great. And I
28:38
think, you know, we do what we do to raise awareness.
28:42
We do what we do to support others with the same
28:45
conditions that we have and maybe give them some
28:47
inspiration, give them some encouragement. So
28:50
what kind of reactions have you received from
28:53
sharing your story, from being so active and
28:59
raising awareness? Yeah, I always get people
29:03
that say how proud they are of me sharing my
29:11
story, getting involved with different projects.
29:14
It's nice. It's nice going on other podcasts
29:17
as well. I always enjoy it because... It means
29:21
I don't have to ask questions. But at the same
29:25
time, it's nice to talk to someone different,
29:26
has a different kind of maybe insight into how
29:30
the conversation goes. Yeah, I think during pandemic,
29:34
it was a lot easier to get interviews, to speak
29:40
to people. But for me, I loved the pandemic.
29:42
I know people didn't, but I loved it for the
29:45
reason that I'd go outside and no one's there.
29:47
No one's there. So I'm walking up the street.
29:49
Um, that's the only thing I loved. But at the
29:53
same time, I didn't like, like people hated it,
29:55
didn't they? That they didn't like, they couldn't
29:57
go out, they couldn't see their friends. But
29:59
that's the life in a, someone has IBD quite a
30:01
lot of the time. So you're kind of living in
30:04
maybe our shoes. What do you wish that people
30:08
understood better about the reality that you're
30:11
living? When we say things sometimes, it's not
30:15
an excuse. It's not that we want attention or
30:17
anything. That's quite the opposite. i feel like
30:21
like i personally lost friends as well due to
30:26
having crimes and and i think it's for the good
30:31
as well as the bad obviously it's not nice but
30:35
i feel like this is why we have a safe space
30:38
like today for example to talk about it because
30:43
you're not getting judged or anything it's hard
30:45
when you talk about it because you feel like
30:48
you're going to get judged. And sometimes people
30:52
may not say anything to you that when you're
30:54
talking about your journey, they might just think,
30:57
oh, can you be quiet now? I've heard it enough
30:59
times. But at the same time, you're not doing
31:02
it for that reason. You're not doing it for your
31:04
attention. You're not doing it to boast or look
31:07
at me, I've got Crohn's. If anything, I'd rather
31:11
not be like that. But we do it so it gets in
31:15
people's heads. They understand it and they think
31:19
it's serious. Like in the past, when I was at
31:22
school, there was a purple day. So I made there
31:26
be a purple day where everyone would come in,
31:28
bring a pound, wear purple for the day. Then
31:32
there was a purple football match. And then when
31:36
I went to college, what we did, we had the teacher
31:41
was ill and I was actually happy that he wasn't
31:45
in because he said no. for this. So basically
31:48
we made cupcakes and we sold them like for Crohn's
31:52
and colitis awareness week one year. And it was
31:54
really nice. These are really good things for
31:57
people that want to know about it. But if you
31:59
don't want to know, it's best to stay away from
32:02
like the people that are going to bring you down
32:05
basically. So yeah. Yeah, absolutely. Protect
32:09
yourself at all costs as well. I mean, it's very
32:11
important. You mentioned that you've experienced
32:14
hard times. And that's natural with the conditions
32:18
that you live with. What's one thing or a few
32:22
things that really helped you to keep going when
32:27
times were especially hard and tough for you?
32:32
Just getting involved with different things,
32:34
I would say. And if I'm not getting involved
32:36
with different things, just doing the things
32:39
that I'm interested in. I used to do a series
32:42
a few years ago. It was Doctor Who and Autism.
32:46
and not new people knew an awful lot about autism
32:50
but they knew about doctor who so we've got people
32:53
on talking about it and raising awareness of
32:55
something else and that's kind of going back
32:57
to what i mentioned about talking about something
33:00
else that raises awareness something that you're
33:03
planning to do so yeah i'd say hobbies play a
33:06
massive massive part on like your whole mindset
33:08
in life in general so yeah i think that helps
33:11
massively because i like especially in the times
33:14
where you're You're doing really bad and you
33:17
can't go at the house. So yeah, I feel like those
33:21
sort of things. That's stuff to look forward
33:22
to as well. Like if something that you really
33:24
like is going to come out, you're going to really
33:27
look forward to it and talk to people who like
33:29
it, like you. Absolutely. And raising awareness
33:32
is very rewarding as we talked about, and that
33:37
can translate into a personal purpose and a purpose
33:41
gives us energy, a purpose sort of. supports
33:45
our mental health as well. So I think this is
33:50
something that you should keep doing and it's
33:53
certainly making a difference in the lives of
33:56
the people that you talk to. I'm very sure about
33:59
that. So Mason, my last question for you in regards
34:02
to Crohn's or IBD in general, do you think that
34:06
we will have the chance to see a cure for IBD
34:10
in our lifetime? There's always a chance. There's
34:15
always a chance. I mean, in the past, I've given
34:20
my blood for, like, treatments. And I'm always
34:23
taking part in research things. So, I hope so.
34:28
I don't think it will be in our lifetime, no.
34:30
But I hope so one day. Because Crohn's has been
34:35
going on a long time. Like, even before we were
34:39
born. So, I'd love to say yes. But I'm not so
34:46
confident. I mean, they're always making new,
34:48
like, treatments. So if they keep making new
34:51
treatments, I'm sure there's people in a lab
34:54
somewhere trying to work out a cure. But the
34:58
thing is, we need to work out how we get it in
35:01
the first place because we don't know. We guess,
35:05
don't we? We guess, like, how we got it. A lot
35:09
of us maybe think that we had had it a while.
35:13
Like, even before we get diagnosed, like, we
35:15
mention about, like, I mean, why? It's not because
35:21
people eat the wrong things. It's not because
35:25
people don't exercise. Some people can only have
35:28
McDonald's chips. And some people struggle to
35:32
have apples. So it's nothing to do with, like...
35:36
It's one thing that annoys me sometimes, you
35:39
know, when you have these... these these accounts
35:43
that try and um say the like like um these like
35:50
herbs and and stuff you have to help your to
35:53
help your crones and it will help cure it i always
35:57
say i don't i always say i think it's like rubbish
35:59
personally i think it's like rubbish fair enough
36:01
if those people want to do that but i think nothing
36:05
is going to cure it really and i know people
36:08
do it people take these plants to kind of help
36:12
them, and it might help them for a little while,
36:14
but down the road, it might be a bad move. Absolutely.
36:18
I agree. And I also agree with you about your
36:22
view on a cure. I also believe that we will see
36:25
a cure, but I think our lifetime, that's a little
36:27
bit of a stretch. And what I hope with the advancements
36:31
in science is that at least treatments will become
36:35
so solid that we can reduce surgeries. And that,
36:39
you know, we can improve treatments and maybe
36:43
limit resistance to medications. So, Mason, it
36:48
was a pleasure to talk to you. And I really value
36:51
your perspective. Feel very inspired by all the
36:56
awareness that you raise and all the people that
37:00
you want to help by sharing your personal journey
37:04
with IBD and autism. So keep doing that. And
37:08
thank you so much again for coming on the show.
37:10
It was a pleasure talking with you today. Thank
37:11
you, Frank. It was nice talking to you too. That's
37:15
it for today's episode of Colitis Unfiltered.
37:18
I'm Frank Tabering. And if this hit home or hit
37:21
your gut, do us a favor. Subscribe to the show.
37:24
And follow us at Kaleidos Unfiltered on YouTube,
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37:31
We'll see you soon for more inspiring stories
37:33
from the bathroom floor.