Carmina Suzanne: Plus-size supermodel diagnosed with MS talks triumphing her 'body's betrayal'

As part of an ongoing series, Yahoo Canada is profiling personal experiences in open letters. Our next entry profiles Carmina Suzanne, a plus-size supermodel who was recently diagnosed with multiple sclerosis. For more from the series, click here. As told to Nisean Lorde.

Sitting in total darkness, waiting for the light to flash. I know the general direction from where it will come, but I don’t know exactly where and when. I have to be prepared for the illumination. There’s a wind machine too, it’s hard to be blown around in the dark but I know the end result will be worth it. My photographer uses only a single speed light for this shoot. Kat has shot me many times, I feel totally safe in her hands. We aim to create a low-key portrait series, where the colours and movements pop in the dark.

Click. Flash! There’s the light, the butterflies take to the wind.

This describes one of the most interesting, challenging and fun photoshoots I’ve ever done in my 7+ year career as a professional model. But it also serves as a metaphor for a lifetime of health challenges leading up to a recent diagnosis of multiple sclerosis. I’ve had very poor health my whole life with a good deal of diseases and conditions, but nothing I couldn’t handle… until 2004, when my old life ended.

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Out of the blue, I am almost knocked off my feet by intense stabbing pains in the head. It feels like I am being shot, stabbed or whipped; I have hundreds of these stabbing pains a day, for the next twelve years, without pause. My eyesight goes in and out the whole time. I end up dropping out of two PhD programs. I cannot drive, I cannot bend over at all or turn my head quickly as it causes seizures, which happens numerous and unpredictable times a day.

I am in pain every single day of my life, ranging from mild to crippling and incapacitating. The nausea, dizziness and imbalance are harder to bear than the pain; every second of every day for 12 years I’m on the verge of vomiting and passing out. I am managing three endocrine diseases in the meantime.

We go to every neurologist and specialist we can think of including The Mayo Clinic twice, where I stump the No. 1 vestibular neurologist in the world. I am misdiagnosed with many conditions; Arterial Sclerosis, Lupus, Idiopathic Stabbing Headache, Exploding Head Syndrome and every kind of idiopathic migraine under the sun. Doctors mis- or undertreat me for over a decade, throwing pharmaceuticals at me to see if any stick – not a single one helps, and in fact most make me sicker.

The constant vomiting wreaks havoc with my voice. This goes on for twelve. Twelve. From age 28-40. Can you imagine if you just threw 30 per cent of your life out the window?! Bright lights, loud noises, strong smells – all of these trigger this mystery disease. I have to hide in a bubble. In a cocoon. We aim to micro-control every bit of sensory input in my life, my anxiety level is super high. I give up trying to get diagnosed for years and try to focus on daily management instead. My life is ruled by fear and restriction.

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In late 2015 I started to randomly go blind in my right eye… a few days later I am heavily vision-impaired. The whole terrifying cycle of doctors and testing begins again. After lots of ER visits, tons of MRIs and other scans we finally figure out the first part of the puzzle; I have a very rare condition where the spinal fluid pressure is abnormally high. My brain has literally been squeezed in a vise for years; this explains the vision loss, the horrible stabbing pains, the nausea and dizziness.

I have to pull out (or am kicked out) of almost all my singing and modelling jobs, which devastates me. What’s the point of being alive if I can’t model or perform?! In the meantime I’m still dealing with the hair loss, weight changes and other difficult body image issues that emerge from the endocrine diseases.

More MRIs, more doctors, a few spinal taps (one of which goes horribly wrong and hospitalizes me with a very serious complication) finally leads to a second diagnosis of chronic disease multiple sclerosis, followed a few months later by a third pain disorder. I am so grateful to my incredible medical team for finalizing the diagnoses, and beginning me on treatment. While it can take 2-6 years to diagnose MS, I have never heard of anyone else who suffered as long as I did without Dx.

After all the mystery diseases were finally uncovered, I went through a very dark period that gratefully didn’t last for too long, partly because MS is hardly the worst medical news I’ve gotten – in fact for me, it was good to know I had a known neurological disorder and not some horrible random mystery disease. Now I now have clarity and focus. I truly feel I was put on this earth with a broken body to help others love theirs. I’ve gone through total hair loss, unmanageable weight gain, and other forms of body dysmorphia/ hatred stemming from what the interior health problems did to the outside of my body. If I can love myself and be supremely confident, anyone can.

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After this forced nine-month hiatus from modelling and performing, which was horrible but necessary, I found ways to modify the demands placed on me. For example, I sit for most singing performances now. While I don’t always have the incredible physical stamina needed to sustain true operatic singing, I have transitioned to jazz and folk. I’ve not done as much catwalk as I would like as high heels are very hard for me, but I am rocking the runway in flats, sandals, boots, bare feet and more. I will slay, in my own way.

I’m often asked why I don’t give up, or take it more slowly, or rest on my laurels… Ha! to that I say! I don’t give up because I can’t – I love what I do too much. Modelling has been my dream my whole life, and I worked incredibly hard, with great sacrifices, to get top work in London, Paris and New York. As a singer, I was born with music in my heart and a song in my soul; if I can’t let that out, I have no quality of life.

One doctor was pretty damn condescending to me when reviewing some surgical options that might have affected my voice. When I told him I therefore would not do the surgery, he said, “What’s more important to you – your health, or your career?” Ummm… my calling/ vocation is the most important, you Jerk! Quality of life is very important to me, and I will keep working in whatever way I can, as long as I can.

Now? I’m more healthy and capable than I have been in many years. This is what age 41 looks like! This is what MS looks like! I push myself hard in pilates and other exercises each week, eat healthfully, and indulge myself with yummy food & wine too. The pain in my life is down by 90 per cent, and I am a different person in many ways.”

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I let go of the fear, the anxiety, the controlling prison my body was. I have done the best modelling work of my career in the past year, and there is no end in sight to how much I will improve. I push myself as hard as possible on set… I’ve even vomited right after a shoot ended! The photos are amazing, so it was worth it.

Most people were very sad when they heard about the MS and other diagnoses, but I was pretty damn relieved. I would rather have a known quantity than a mystery, however horrifying the answer might be. All my health problems have made me strong out of necessity. I’ve had seizures on stage, I’ve had to vomit violently minutes before a major singing debut, I’ve had to be homebound and watch my social life melt away. If you’re not strong for all that, you wouldn’t last one day. But I am not grateful for it in any way, I wish every day that I had none of these diseases.

I won’t make you feel better with some pabulum about how it made me stronger, or that I wouldn’t trade my journey for anything. That’s bull. Instead I view it as making the best of, and even triumphing over, my body’s betrayal. It nearly broke me on a deep level. As a plus model it took me many years to love myself on the outside, so now I have to reckon my relationship with the inside of my body.”

“I was waiting for the light all these years. The light of diagnosis, the light of treatment, the light of knowledge and support. And of FREEDOM. And I will fly right into it… blossoming and blooming. My broken body is the cocoon from which my butterfly spirit emerges free!”

Carmina liaises with other models who have chronic diseases like MS, lupus and fibromyalgia to form an advocacy group, and to put on fashion events. Contact her on Facebook or Instagram.