Mitch has been an iconic and very public face of cystic fibrosis (CF) for many years.
If you don’t know him he worked at Cystic Fibrosis WA (CFWA) for approximately 18 years, commencing as an education officer, then fundraiser and becoming the Executive Director of (CFWA). Following this he became the President of Cystic Fibrosis Australia (CFA) for about 6 years and then President of Cystic Fibrosis Worldwide (CFWW) for another 6 years. Currently he is now Vice President of CFA, taking a slight back step concentrating his activities on his position as Chief Executive Officer (CEO) of CLAN WA, a fantastic community based organisation that offers FREE training workshops and in home support for carers
The focus of this interview is not so much about Mitch’s achievements, however on a more personal level about taking enzymes and doing Intravenous Therapy (IV’s) in a public space such as a restaurant.
Were you always open about telling people that you had CF?
Yes, always, it never occurred to me not to tell somebody. I grew up in a country town and kind of assumed everybody knew. (CF) was unknown then and I was never told that it was a bad thing.
Was there ever a time in your life that you were more self-conscious about having CF, such as through the teen years?
Yes, when I was a teen I was short and scrawny, my growth spurt didn’t happen until after high school. My teeth were also stained black through tetracycline antibiotics as a young child. Princess Margaret Hospital (PMH) used to take photos for lectures. The teeth were the hardest thing, I used to get picked on and teased and stopped smiling so people wouldn’t see my teeth. As an adult I had all my teeth crowned by the dental clinic so that they looked normal.
Has there been a time in your life that you felt discrimination about having CF?
Not because of CF. People pick on you for normal things. I have never not done anything because of CF.
CF doesn’t seem to get in the way of you leading a full and interesting life. You seem comfortable about doing IV’s in public such as restaurants etc., were you always comfortable to do this?
CF doesn’t get in my way. I do things I can do, not things I can’t. I push the limits and pull back when needed. Consultancy was good, the hours worked to suit. Now I have a constant workload which I’m learning to manage. I’m also lucky as I’ve always had supportive employers, it’s a lot of give and take and I’ve had flexible workplaces. No, I think if you try to hide things it’s more noticeable. I just go and do things like take insulin, creon etc. as if it’s just normal. I do things in plain sight and just treat it as it’s supposed to be. I do IV’s in public sometimes just because I don’t want to miss out on anything, particularly long meetings, I just have to. If you make it part of your life it therefore seems normal.
Have you ever had any issues from other people about doing treatments such as IV’s or taking enzymes in public?
Never had issues from people. Some people ask “what’s that”? They’re generally very supportive.
Not all people are comfortable about taking enzymes in public or doing IV’s in public. Would you be able to offer some advice on how this could become easier? Or do you think this is simply an individual choice?
People make choices, IV’s are a hard choice, I’m just happy to be the centre of attention. With enzymes I don’t try to hide them, people don’t really care and they stop noticing, like it’s just normal.
Maintaining a good healthy weight is integral for good lung health do you have any tips on eating well when not feeling so good?
I like food that is easy and when unwell I like comfort food e.g. stews, mashed potato. I eat lots of different things when I go out such as Thai, Japanese and then top up with extra CF food.
My parents were always very open, CF is not something you can control. I think it’s important to make the best of whatever you have. If you hide something then it’s as though you’re ashamed of it. I have always disclosed up front with employment. There were always “age milestones”, I kind of ignored these things, and I never expected not to do the next thing. I never took on the statistics they aren’t people, just numbers, I always assumed that I would be a survivor and perhaps had some denial about the implications of CF.
Article from RED Magazine, Edition 3 2016.