September 19, 2020

"I could have a day where I do absolutely everything right but still end up passed out on the floor."

 

Michelle Roger. A stylish woman posing in a wheelchair, dressed in a black dress, stockings, bangle and funky jewellery.


Meet Michelle Roger………..

Tell us a little bit about yourself.

My name is Michelle and I am 47 and live in rural Victoria. I have been married for 27 years. I have 2 adult sons. I live with my husband, my rescue Great Dane and chickens who are the props in my styling photos. I am a writer and an artist. A lot of my work is memoir based, written and visual, and explores my life as a disabled woman.

If you were to describe yourself in 3 words what would they be?

ECLECTIC – I’m a bit of a magpie, I like to collect and dip my creative fingers in everything.

NURTURING – I have a strong pull to care and nurture others.

PASSIONATE- If I’m upset about something, I have to speak up. It’s a bit entwined with nurturing that I can’t stay silent when I see injustice in the world.

What is your health diagnosis? At what age were you diagnosed and how does this impact you daily?

It’s a complicated story. My main, overarching diagnosis is a form of dysautonomia. However, I have a collection of other diagnoses that tend to cluster and a few others that don’t.

When I first became ill it wasn’t very clear. My blood pressure, breathing, heart rate, digestion amongst others, were out of control and were making no sense whatsoever. I was passing out, vomiting, sweating to not sweating at all, my temperature was up and down even though I didn’t have an infection. It took a long time and a lot of not nice doctors to finally get a diagnosis. 

Getting a diagnosis was very challenging, there’s was a lot of dismissal from a variety of health professions. The typical thinking that women are hysterical, or you’re depressed, stressed-related kind of diagnosis’. I was really lucky to find one specialist who knew what was going on. As soon as I told her my story, she knew what I had and sent me off for tests. I’ve stuck with her since then because she’s been brilliant, and I trust her which is so important when you have an ongoing medical condition.

Even though I have a diagnosis now, a lot of people haven’t heard of it. Most doctors have little to no knowledge of the conditions I live with. So, if I end up in the emergency department at the hospital, I often have to go through this long process to get the treatment I need. Being in a rural area compounds the issues. Though telehealth has been a game changer. When I used to travel into the city to see my specialist, it would be a 3 hour drive there, the appointment then a 3 hour drive home. I would be exhausted, which would amp up my pain and other symptoms and then I’d take days to recover.  Having Telehealth takes that out of the equation. But living rurally, if you have anything that’s a little left of centre, it’s always problematic. Anytime disability is woven in there, it’s another level, though that’s not isolated to rural areas. Rocking up in my wheelchair to see a doctor or health professional I often find I can’t get through doors, get up on the exam table etc. And don’t get me started on supposedly accessible toilets with doors too heavy to open or small to fit my powerchair.

Day to day it’s a variable disorder. I have had what you would call a ‘stepwise progression’. Where you go along okayish for a while and then your health drops off, then you stabilise, then it drops again. It’s also never quite one thing. Because dysautonomia is a multisystemic disorder, and I have other conditions, it means that it can be one day I’m passing out because I can’t control my blood pressure, to the next day I’m throwing up, then the next day it’s something else, and usually a combination of somethings. My functioning goes from not even being able to get out of bed to I can go to a café for a few hours. It’s hard to explain the impact that it has because it’s 24/7, so it’s hard not to have a day where you’re not thinking about it. From the moment I wake up to the moment I go to bed, I must negotiate around what my body is doing. I could have a day where I do absolutely everything right but still end up passed out on the floor.

I was in my early 30s when I started to become really unwell. I had been ill of and on since childhood, but it wasn’t until the mid-2000s that my genes really kicked in and the world changed. I had to stop my job, could not be the parent I wanted to be, relationships were upturned, all the things that come with having what was then a newly acquired disability. I have had decreasing function since that time and increasing impacts affecting issues such as my mobility and range of motion.

What gets you through those challenges day to day?

After all these years, this is just normal day-to-day. Anything becomes normal after a while. I did finally engage in counselling about two years after I was diagnosed, which I still think is the best thing I could have done. I also have a close circle of friends who are primarily in the disability community who just get it. If you’re having a tough time there’s none of the perky positivity, it’s the ‘we understand it’s tough and we’re going to be there for you’. There’s no pressure to put on a happy face when things are bad because they all get that.

I would say for anyone who is new to chronic illness, injury or disability get yourself that group of people who fundamentally understand it and live it, it’s just vital.

You said you had to give up your job, can you tell us what you used to do?

Before I was diagnosed, I was working as a neuropsychologist. The first time I collapsed was at work and funnily enough I was working in a hospital. There simply came a point when I was no longer functioning well enough to work the hours or manage the work commitments.

 

Do you use your psychological skills in your writing?

Not really, or maybe I do, and I just don’t realise. It’s hard to devolve yourself from that previous life and the way of thinking, the way you move through the world with other people. So I probably do still incorporate that into my writing but it’s not a purposeful thing. I use it in a way that I try to explore the grief around illness, loss, isolation and a changing body and what that means. Particularly for me, and especially earlier on I had small children, so things like what that meant for my role as a mum or a wife. I suppose if there is a link between my old and the new, it would be exploring the physiological lived aspects of being disabled and chronically ill more than the straight clinical aspects.

 

Can you tell us about your new career as an artist, you create beautiful walking sticks and other artwork, how did that come about?

I’m a bit of an eclectic artist. When I first stopped work, one of the first things I did was get into writing as a way of processing my changed life, which I continue to this day. Photography, painting, fashion and, as you mentioned, the walking sticks are all part of my creative exploration. The walking sticks came from pure frustration of not being able to find something to suit my personality. So much of the stuff that people with disabilities are provided or offered is quite bland, there is no sense of style. It is like you’re walking around carrying a hospital with you. So, changing that up was very important for me. I like colour and a bit of bling!!!

 

Are you able to dress yourself?

Mostly. The days that I’m really unwell, I just stick to my PJs. But most of my clothing that I wear now is stretchy, doesn’t have zips, or buttons and is a better fit for movement. Things like my compression stockings, which are pretty hard to get on and off, my husband will help with or a couple of dresses that I really love and want to wear he will help me with the zippers.  

 

Do you struggle with finding the right fashion?

For the last 30 years I have been bit of a clothes horse. So I have a large selection to choose from. I do find it hard when I’m looking for new clothes. Shops in a rural area are limited. Most aren’t accessible or they don’t have an accessible change room. Because I now primarily buy online, you just never know what you’re going to get.  I found that I have really limited the brands I buy from because I now know what works for me and what doesn’t. I recently bought a stretch velvet suit and cut the waist out, so I don’t have elastic sitting on my stomach and I pretty much hack clothing now. Shopping itself, is frustrating and exhausting. It’s all the added work. If I do find something I like in a shop, they won’t have accessible change rooms. If I buy from online, I’m looking at refund policies, or how to send something back for when they don’t work. If you’ve got energy issues or cognitive issues shopping can be tough. It’s all these added imposts to the whole shopping experience. 9 times out of 10 the only photo they have is of a standard size able-bodied model standing and when I’m in my chair that outfit sits completely differently.

The other struggle I have is there’s no sense in the wider community that we would have the same desires as anyone else. Disabled women are desexualised. We might as well have nothing between our chest and knees. We’re made to feel like, ‘why would we want to look sexy for a partner or just feel nice for ourselves?’ Why can’t we have sexy lingerie that works or a sexy dress for when we go out for dinner? Just because we move through the world differently or communicate differently, whatever a disability might be, the wider community just can’t fathom that we would want these things. What I don’t understand is ‘Why wouldn’t we?’.

 

If we could design a garment for you what would it be?

What I would love to see, because it’s lacking in the market, is something I can wear out for a special occasion. Again, it’s like people don’t expect us to be at special occasions. There is a real lack of sense in the market that we go to…… weddings, graduations or events.  You should be able to find clothing that you can put on, feel great, is not uncomfortable, it’s not a hassle.

I would love to see something that is not a stock standard t-shirt styled dress. I would love to see something more dramatic, like a nice sleeved dress or a dress where I have the option to show a bit of cleavage.  A nice dress can be made accessible with the right material. 

 

If you could educate people about inclusion and disability, what would it be?

For me personally, I want to be able to go out into the world and engage just like everyone else.  Not to have people come up and tell me how inspirational I am for having a cup of coffee. You can accept that someone’s different, you can see value in that, you don’t have to ignore it but you also don’t have to make this big scene of ‘we noticed you’re disabled’. It’s uncomfortable and cringy.

This for me is a big issue. I get patted and told I’m a ‘good girl’ just for doing my grocery shopping. There was this time that I was out, I was having a wine, I was dancing in my chair, I felt fantastic, I loved what I was wearing, and a stranger comes over and make some comment about how lovely it was to see me out and how inspiring it was. These things, whether people mean well, can really bring you down. Everyone else in that club was drinking, dancing, and having a good time, why come over to me? Instantly I am different. Those little interactions I find really challenging. It’s as though I can’t ever leave my house and feel like everyone else. People make assumptions about your life without knowing anything about it. People have this perception because I am in a wheelchair or I use a walking stick that my life must be awful and pitiful. This stops me from being an individual who has an individual life. They would not come up to me if I wasn’t using those visible markers for my disability. There are these misperceptions of what our lives are like and an unwillingness to get to know people and find out our lives aren’t what they think.

 

Can you tell me one thing that your disability has taught you over the years?

Perceptions. We have these notions of things that are lines in the sand. Like, ‘if I could not do blah, then it’s all over, I would want to live like that’. You find that those lines in the sand do not really mean anything and they’re based on false information that is perpetuated in our society, frequently by those who have never experienced it. If you have a chronic illness or disabilities there are sometimes things that you must do every single day that would gross other people out, or be considered incredibly painful or embarrassing. But you learn they just end up being regular daily things. There are not these lines in the sand that we have been taught there are. There have been studies over the years about what people perceive as their final straw. 10 things that people around the world said would be their line in the sand, well I’m already doing 5 of them and living a joy filled life. The perceptions aren’t based on any form of lived experience, just a rehashing of the negative stereotypes around disability. All of these people are essentially saying that my life isn’t worth living, but the reality is, they are just things that I have to do, or manage, and lots of other people do them too. They can suck at times but they don’t negate the joy of my wider life. And I can’t help but think how much of a burden we could alleviate for people, especially if new to disability, by getting rid of those, and other false perceptions, about life with disabilities.

 

Fascinating and bold women like Michelle are why we created Christina Stephens and the Unique Women Unique Stories series.

Our vision is to provide women living with disabilities and changing bodies with a ‘choice’. A choice in fashion, a choice to be included and a choice to be heard. By shopping with us or even simply sharing our story, you're helping us get another step closer to achieving this.



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