The story of Joanie
I was an active mom, wife and person who worked full-time, was studying at a Graduate level and just trying to live life to the fullest in my late 30’s. I was still trying to play sports when I was able to and be the best mom that I could be. I had been playing ice hockey in a women’e league and really just trying to enjoy the experience of being around other moms and playing a sport. I soon realized that I was struggling when I played hockey. I found that I would get halfway through the second period and begin to shake and struggle. This went on for more than a few weeks – initially, I thought it was that I was just out of shape and needed to get my cardio back on track and I thought after playing for a few weeks, that my fitness would improve and then this struggle would dissipate. But that did not happen – in fact, my symptoms worsened. So much so, that at the end of my hockey games in the coming weeks, my teaammates had a front row seat to my increased symptoms. I was shaking at the end of the games – and my teammates thought that I was having a seizure or something. They encouraged me to follow up with my doctor. SO I did. I went to my family doctor and began to explain the symptoms – the tremor, the feeling of the lack of air in my lungs and the obviously change in my physical capacity – I mean I could no longer make it through the 2nd period of my hockey game! ?? My family doctor was not sure – she referred me to a neurologist and told me to monitor my symptoms and we would try to figure it out. After waiting nearly 12 months for my referral to the neurologist, I was finally being tested for these symptoms that were becoming more prominent. (This was December 2011) I kept explaining that it felt like the air was not able to get to my lungs – that as soon as I try to exert myself, I cannot breathe; that Yoga is very strenuous for me and deep breathing is an impossibility. In the end, I was treated like a hysterical woman that suffered from “mental health” issues. The neurologist determined that I likely struggled with stress and anxiety. I was dismissed and treated like a woman that was approaching her 40’s and had gained weight and was over-burdened in life and not coping…I was totally dismissed. I felt very let down by the medical field and many in my family were not supportive or even believing my symptoms. I had very little support and felt isolated and alone.
I went back to my family physician and was devastated by this diagnosis, or lack thereof. Years went by after that – and my symptoms worsened and affected my quality of life – I felt hopeless. My family doctor tried other things – referrals to pulmologists, respirologists, asthma testing, acid reflux and x-rays on my chest but nothing came up with a diagnosis. Ultimately, my family doctor and nurse practitioner determined that I must suffer from asthma. I thought that this was ridiculous – I never believed this diagnosis. It just did not make sense. But I decided that I must be crazy – I mean it had been 6 years that I had symptoms that were affecting my life and I just must be crazy – maybe I am just anxious? Then one day I was at the hospital to get a mammogram. I was meeting my girlfriend who is a nurse at the hospital and she was going to meet me and have a tea/coffee break with me. We took our drinks and began to walk towards her office, which was upstairs. I began to walk behind her (because I was very slow at this point while walking) and after about 6 steps, she turned around and asked me what was wrong with me? I told her – remember, I told you that I had respiratory issues…remember? She said to me – respiratory issues? You do not have respiratory issues – you have an obstructed airway. I was like what??! She immediately took my pulse and said that after 6 stairs, my heart rate was equivalent to a woman my age doing cardio for 45 minutes. She was astounded. We went to her office and she wrote some things down for me to take to my family doctor – she told me to ask for a referral to a ENT. This was December 2016. I got in to see a ENT in January 2017 and she scoped me and immediately told me that she knew what was wrong with me. I was in disbelief. I started to weep – did this mean that I was not crazy? Were my symptoms real? Was my struggle real? Oh yes – it was real. The ENT determined that my airway was 70% blocked! What??! SHe booked me for surgery for February 2017 – 1 month later. Imagine my relief and then complete anger at the years of struggle and treatment by many health practitioners who never took my health concerns seriously. I did have my first laser dilation in February 2017 – and it turned out that I was more than 70% blocked – the obstruction was worse than my ENT had thought. Following this first laser dilation, I have since had two subsequent surgeries (April 2018 & February 2019) and I am now and will continue to be advocating for my health in a more assertive way.Â
Being diagnosed properly has given me access to a community of survivors – this rare disease – idiopathic subglottic stenosis is not well known and even less understood.  Having others who understood has been transformative. And so many of us have a very similar story of not getting diagnosed for years.  The struggle with this disease is real. It affects my life everyday, I just try to not let it define me – but that too, is a struggle.  I will try to shine a light on this disease as I move forward in hopes that it will prevent one other person from feeling the hopelessness that I felt for 6 years with symptoms that were not taken seriously, yet had profound affects on my quality of life. This disease has challenged me for sure, but it has also given me back something – it gave me back my ability to listen to my body and believe her. Nobody knows my body better than me and nobody will have me doubt it again.Â