In this month’s interview we talk with Siena (she/her) from Toronto.

Hi Siena! It’s great to talk with you today! Can you please tell us a little about yourself?

Hello everyone, I am Siena (she/her)! I am 23 years old living in Toronto, Ontario. I am currently working on my masters in counselling psychology. I identify as someone who deals with chronic illnesses and have been since I was born premature with my twin sister; born 2 months early. Luckily my twin sister does not deal with health challenges but instead it came my way :)! I try to view my health as it has shaped me into the empathetic human that I am today. I have a bunny who is my everything, she makes me smile on my bad symptomatic days with her funny personality. I have found a hobby in reading, this year so far I have read 40 books. I have also fell in love with colouring. Both colouring and reading help clear my head away from both my health, school and just life. 

Do you have a diagnosis for your symptoms?

In terms of diagnosis I have quite a few. When I was born the doctors found a hole in my heart. I had that closed at aged 5. I also had a hemangioma (a non-cancerous face tumour) grow on my face so I had to have 5 surgeries to remove that as I had cell regeneration which my surgeon has never seen in my given face location. I was also born with low muscle tone. I crawled instead of walked and started walking at age 3. I was equal speed crawling as my sister was walking! I got really confident in my crawling skills!!! After dealing with those things, everything calmed down until around my teenage years, when I was diagnosed with PCOS, scoliosis, hyperparathyroidism, kidney stones, ocular migraines, and IBS.

To me PCOS, which is polycystic ovarian syndrome, is a syndrome that is characterized by a hormonal disorder affecting everyone at different rates due to the large range of symptoms. For me it includes weight change, irregular or non-existent period, and high testosterone leading to increased body hair. It’s a disorder that I feel is very underestimated and under looked but affects so many beautiful people. 

Additionally, I ended up also being born with a head tilt due to a nystagmus (constant eye shake), at the age of 17 I had my first eye surgery. It was a double eye surgery and the biggest surgery my eye surgeon has ever had to perform (he was a veteran surgeon!) and a surgery I wasn’t exactly prepared for. I ended up getting double vision from the surgery that was supposed to be temporary, but after weeks it was still there. I had another surgery to correct it but things visually were still not great. I ended up getting referred to a surgeon in Akron, Ohio, USA. I ended up having 3 more eye surgeries in the States with a total of 5 eye surgeries. They were very invasive and sort of traumatic which has now landed me with medical PTSD. While in the realm of mental health, I have also been diagnosed with anxiety, depression, and recently diagnosed with ADHD. 

In terms of my eye surgery I had it because I grew up with a large head tilt. My normal 90 degrees was me looking almost up and I felt like a giraffe and we knew it may lead to potential neck problems down the road that seemed very daunting. 

How long did it take for you to get a diagnosis?

Getting the diagnosis at 16 was yet just another diagnosis not realizing the impacts it would have on me as I started my early 20s with major weight gain and hormone fluctuations.

Which of your symptoms do you find the most debilitating and why?

My current symptoms that I am finding the most challenging would be my inability to workout leading to awful migraines and my body reacting so sensitively but also the constant fatigue – feeling like a zombie. 

When did you first realize that you had chronic illness and how has your journey been since then?

While dealing with all of this I feel my health has always been a major part of my life. I try not to let it define me but on days it definitely does. With raging fatigue living what people call a regular life can definitely be very challenging. Additionally, having multiple appointments pretty much weekly feels like its own job that I don’t get paid for haha. I would do anything right now to work a job, but I also understand my health is my top priority and ensuring I am healthy for myself but also for my future clients as I start my psychotherapy career is essential. In the 23 years I have never struggled with health burnout until now. Those weekly appointments and daily symptoms of fatigue, feeling almost like a zombie, and migraine headaches that also come impacting my vision and productivity, those combine to make life a little more challenging. But I am embracing that I have a huge team behind me whether that be my family, my mum and dad, my sister, my large team of doctors, my friends, my boyfriend, as well as my health account on Instagram @sienashealthstory where I have found the most amazing people who also deal with health challenges who all motivate me, allow me to grieve those bad days, lift me up when needed, but also support me whenever I need it. 

How has your experiences of the world changed since your symptoms started?

Since my health has been my whole life I don’t know much without it. But I take every day as it comes. I try to implement strategies to reduce burnout like journaling, colouring, reading, listening to music, petting my bunny, and enjoying the fresh air whenever I can. 

What has been the most helpful for you as you have gone through this journey?

I wanted to create a health account for both myself but for others. I wanted to feel less alone in my journey – I love and appreciate my support system but it was also a challenge being the only one with health issues so there are definitely areas that people without CI [Chronic Illness] would not understand. I also wanted to share my journey in hopes of others not feeling alone. I am going into psychotherapy so I am going to slowly transition my health account that encompass me and my health journey while also integrating therapeutic ideas while not giving medical advice. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

If you are in a similar situation or dealing with challenges relating to your physical or mental health, I see you and I hear you. I am always a message away. I love chatting about my health and looking on the positive side of things. Trust me I could go down a negative spiral but looking on the positive side helps me keep up the motivation to keep on moving forwards. 

Thank you all for reading my story. If you have any questions or want to connect please don’t hesitate to reach out to me at @sienashealthstory on Instagram

Take care ❤

Siena McLaven

Thank you Siena!
You can follow along with Siena on Instagram @sienashealthstory
She is also an advocate for the St. Michael’s hospital in Toronto.