Psoriasis Series
INVISIBLE MAN
A film by NIMISHA MUKERJI

0:24We experience the world through touch. It’s how we connect with people. When you love someone, you hug them, you kiss them, you hold their hand. Now imagine a world where you can’t touch anyone and no one touches you. That’s where I lived for eighteen years. I became an invisible man.

0:52My name is Andrew Gosse, and I live in Paradise, Newfoundland. When I was seventeen years old, I felt invincible. I was about to graduate from high school and was going into the army. My goal was to become a peace keeper and represent my country.

1:07My hopes when joining the army were really to be all that I could be. Wearing the uniform, it really meant something. It meant that I was a part of something bigger than myself. When you travel together, work together, sleep together, eat together – it becomes your identity by and large.

1:27I had family, friends, I thought I would fall in love, get married and then I got diagnosed. I was getting ready to go on my first, we used to call them ‘callouts’. When you’re in the army reserve and you’re going away for any period of time, it’s almost like a contract. I was getting ready to go away and I felt a little scab on my left elbow. It was maybe the size of my small fingernail. It wasn’t normal.

1:57My family doctor has known me for a great many years. So when I went in and he looked at it, it was very matter-of-fact. There was no drama, he just looked at me and said “Oh, that’s psoriasis.” I said, “Okay, make it go away” and he said, “No that’s chronic” and I honestly didn’t know what chronic meant.

2:22Psoriasis is an auto-immune disease. It presents itself predominantly in the skin.

2:33With psoriasis, that process is constantly building up and building a scaly layer, and eventually it will leave just raw skin underneath.

2:46Heart breaking, to see your son like that and not being able to do something for him. Andrew used to hide psoriasis by wearing long sleeves.

3:00I wore hats. There are times I used to put band-aids over my fingernails so people wouldn’t see it.

3:08Because a lot of people are afraid, they think that this is really contagious.

3:14I would go to work for the day. I would be in physical agony most of the day. The blood and the leaching from the lesions would soak into the clothes, my socks. I would come home; I would have to tear that clothes off. So you can imagine the amount of laundry.

3:39I was always quite prepared to serve my country both domestically and abroad. The United Nations were looking for people with the qualifications that I had. To do a six month peace keeping tour in Cyprus – I applied. I had quite a good opportunity to go, but when I had the medical done they saw that I had psoriasis and I was told at that point that it precluded me from participating.

4:11All it did was really piss me off, that a disease that I have absolutely no control over has caused me to lose what I saw, as a great opportunity. I left the army in 1994. That set me back, because up to that point it had just been a personal struggle that I was able to hide and contain. You give up doing treatments; you give up looking into the disease, not because you’re disinterested in yourself, but you’re afraid to hope again.

4:56I met Andrew at Tim Hortons. I was working there during university.

5:05I mean I fell in love. Boom. Wow. There is the most amazing human being ever.

5:13We just, I don’t know I guess we kind of hit it off right from the start, and we had a lot in common, so it just, it was natural I think for us to just, share everything.

5:26I spent a lot of time preparing her for what psoriasis was, what it looks like, what it feels like.

5:35There was never a thought of “Well you know, I can’t deal with this, I can’t be around this.” It was part of who he was so I mean it was, there was no, you know , if I wanted to be with him that was just going to be part of it.

5:49She has never wavered, not an inch – which is only part of what makes her remarkable.

5:58We were engaged, I think it was three months later. Then it was a year after that when we got married.

6:09It is very difficult to feel comfortable, physically, romantically but you still want to be together as a couple, as husband and wife. I just started to recede.

6:30I know it was always dark. If he had to get up in the night, it was never turn on the light.

6:38She had always been completely okay. It was not off putting to her. She would always reiterate, you know “It doesn’t bother me.” and I said to her “No, but it bothers me. I don’t want to see it.” At night, I used to have to scratch myself pretty well all over what I could reach with a steel comb or a brush, to peel away the scale, and pour vinegar or lemon juice over it and make the skin burn. And I know that sounds very strange, or even sadistic, but you can sleep if your skin is burning – you cannot sleep if you are itchy, it will consume you.

7:22There was one morning, he woke up. I remember looking over and he was sitting on the side of the bed, kind of slumped, like dejected. He was upset.

7:39It’s probably my lowest point. She asked me, she said “Whats wrong?” and I was just, I was defeated. Disease wins. I just said “I’m tired of being alive. I’m done.”

8:01It’s horrible. It’s horrible to see someone that you love, hate the fact that they’re still alive, because of their skin. I mean it’s –

8:17Disease is a side effect of being human. We are all a patient of something at some point. Hope is a very, very tenuous place to be. Once you’ve had it removed a number of times.

8:48Dr. Gulliver came here ten years ago, and he had a bigger than usual smile. He said Andrew, there’s a new treatment coming down the pipe. I’ve been poked and prodded, I have had skin biopsies. I had nothing left to try and I had nothing to lose. So I was enrolled as patient ‘001’.

9:14He had tried everything. If it was suggested as “This is a possible treatment…” then he tried it.

9:28At first it was, you know “Am I just imagining it? Was it all in my mind?” He was almost afraid to say “I think it’s working!”

9:37And about sixteen weeks later, I was clear. There’s times emotion arrives and I don’t even perceive it coming. It’s – but – clear, clear. It was gone.

9:55He didn’t want to put on clothes anymore. It was like suddenly he got out of jail. He was free and he just, we went and did everything we couldn’t do up to that point.

10:06Sometimes you need to re-learn how to live.

10:25I used to be quite concerned, if psoriasis would develop in either of my children. And again, there is always the possibility that it could. Years ago, I would have been terrified. The treatments that are available to us now I mean, they transform the landscape. It changes the game.

10:44Oh Andrew, how are you?

10:45Doing well.

10:46Nice to see you. Welcome.

10:47Good to see you, thanks.

10:48How’s everything going, psoriasis still doing well?

10:51It is doing exactly what we want it to do. Under control.

10:53Oh, fantastic.

10:54Andrew is probably one of the strongest advocates for psoriasis I’ve ever met. He has created a patient advocacy group, which has allowed many psoriasis patients to learn that it can be treated, it can be controlled.

11:12What kept me going, even in the darkest time? Two things: my incredibly awesome and amazing and beautiful wife and hope that there was a light at the end of the tunnel.