Love the Life You Live, Live the Life You Love!

Michael Kuluva is an American fashion designer and founder of the New York Fashion Week label Tumbler and Tipsy. Born in 1983, he started out as a professional figure skater but now has a colourful career as a fashion designer. A lover of Birkin bags and chocolate, Michael was diagnosed with rheumatoid arthritis in 2011. He talks to us about life #behindthesmile

Michael Kuluva Interview

‘Love the Life You Live, Live the Life You Love!’

In talking about his diagnosis, Michael explains ‘I was sent to a Rheumatologist, and my whole body lit up like a Christmas Tree. I couldn’t believe that someone at 28 could have RA, something that’s potentially so debilitating. And then things started making sense to me; why I wasn’t cutting my fabric straight or why my sketching was a bit off. I was getting frustrated, my teachers were getting frustrated, and I thought “wow, this is what’s happening”.’

Had you heard of RA before?

I heard it mentioned once. I was on a cruise with my Grandmother, and they were having a talk about arthritis. They talked about osteoarthritis and rheumatoid arthritis, but I hadn’t heard of it before, and people always think it’s about getting older or doing too much sport when you’re younger. When I got my diagnosis, of course, I Googled it – which I wouldn’t recommend!!

When you were diagnosed, did you have a sense of relief?

Well, it wasn’t until I started treatment that I felt relief really. The first treatment I started on, I had a reaction; it was horrible for 3 or 4 weeks, so finding the right medication was a priority, as anyone living with this disease will tell you. I wanted to try and understand what this was and understand why my body was attacking itself.

What are your symptoms?

Fatigue mostly. I try and keep as active as I can. I travel so much that previously my body couldn’t keep up. The regime I was on before wasn’t suiting the frequent travelling, so I’ve just started another regime, which is much better. I’m now doing Yoga and Pilates – it keeps me moving, but I also love walking my dog, Cooper.

What made you go public?

You know, I kept it a secret until last year. I felt a stigma as well; I didn’t want to feel that an editor wasn’t picking up my designs because of my diagnosis, and my management and agents didn’t want it to affect my endorsements. I always wanted to ‘come out’ about it, but I wanted to be established in my career, to get a voice and a following and know I could talk about it so I could draw more attention. Take something negative and persevere with it to where I am now.

Is there a relief about being ‘out’ now?

Oh yes. When Creaky Joints and I got together, we brainstormed about how we could raise awareness. I thought of the collection…showing pain visually. People can’t see the disease, so this collection brings attention to it so much more. We’ve had such positive feedback about the designs. I can’t choose this disease, it can’t be ‘fixed’ or cured, but we can expand on what we can do for it.

What kind of advice would you give to other people, especially people who are newly diagnosed?

Don’t Google it! Find someone else who has the disease and talk to them, find a group (like yourselves) and talk to them, get information, and understand it. Get the real information. A lot of these things on the internet scare you, so get the real truth. It’s not scary if you fully understand it and know your limitations. You have to figure out ‘who can I talk to?’ I have no problem explaining what I went through. The other advice I would give is to be patient, it’s not a sprint but a marathon, unfortunately.

We struggle to get men, in particular, to come forward and have conversations like we’re having now. How was it for you ‘coming out’ with work.

I understand that people might feel that it makes them look weak; I’ve heard that a lot. It’s quite easy to hide this disease; it’s invisible to most people. I’m lucky now as I work for myself so I can control that situation. But people should be able to talk to their manager 1 on 1, you have rights and need to be heard. Things can be adjusted at work to make things easier. There are laws to protect you.

What motivates you?

I was a professional figure skater in the US and to do something like that at that level requires a whole load of determination. With my collections, I push through deadlines. Fashion week is when I get my biggest flare-up because there’s usually lots of stress. So, I make sure I get enough sleep, that I eat well and look after myself properly. My weight tends to go back and forth, so I have to keep an eye on it, especially during stressful times.

If you had a superpower, what would it be?

When I was doing Holiday on Ice, I was ‘Dash’ from The Incredibles. Speed would be awesome; it would help me get places quickly. I often think ‘I wish there were two of me’.

Do you have any guilty pleasures?

Oh, tonnes and unfortunately, they’re very expensive! I collect Birkin bags. (At this point, our Marketing and Comms Head, Sally, needs to have this explained to her – apparently, they are a ‘thing of beauty, to be looked at rather than used practically!’). They’re the Rolls Royce of bags. I also love chocolate (which I’m not supposed to have). And playing with my dog, he gets me out, and he’s a great companion.

If you could invite 3 people to a dinner party, who would it be?

Ooh, good question. Probably the Dalai Lama so I could get more insight to life. Maybe someone from the Royal Family like Queen Elizabeth – it would be just so over the top and cool. She would have the best stories! And then my partner – I want him to enjoy it with me.

What 5 items would you take with you on a desert island?

My bags, obviously!! Water, my dog, a computer to stay in touch with people and a tent – I like to be in the shade.

We are truly thankful to Michael for giving up time in his busy schedule to talk to us all the way from California. He’s currently enjoying working towards his next collection for New York fashion week in September; we wish him all the best!

You can follow Michael on Twitter