Chronically Johanna is a chronic illness warrior from Finland who inspires workout motivation. She advocates for Ankylosing Spondylitits and Fribromyalgia, as well as Anxiety & Burnout. I love hearing patient advocate stories from all over, as every story is unique. In this episode, we can learn about chronic illness burnout, finding motivation with fitness, and about Ankylosing Spondylitis from Johanna.
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References regards to waiting time to health care in Finland:https://read.oecd-ilibrary.org/social-issues-migration-health/oecd-reviews-of-health-systems-finland-2005_9789264013834-en#page65
- 32 years old, 33 in June
- I live in western Finland
- 2021 was a tough year for many. Can you share how your year has gone and how it has motivated you despite the lows?
- My year started with burnout sick leave
- Then new job
- Covid19; During spring I was paralyzed by fear
- Relationship ended
- During autumn I figured out how to manage my fear: weigh the gainz and risk
- I read your story in lovewhatmatters.com and you perfectly painted a clear picture of chronic illness from the perspect of a child. It was traumatic. You said, “I had no say over my own body.” How did this affect you as an adult?
- Became a people pleaser
- Didn’t get to know myself
- Self respect and awareness was missing because there was no acceptance of illnesses mentally
- Over achiever
- I think this all led to my burnouts later
- You are an amazing patient leader and advocate. Can you share your health story with those listening?
- Health story wow! My earliest memories of being sick are from when I was 3
- First surgeries tonsillectomy, sinuses surgery
- Elementary school
- Junior high school is when I had my last epilepsy seizure
- High school was quite ok
- After high school graduation which in Finland is at 18-19 I developed reactive arthritis symptoms => developed into ankylosing spondylitis diagnosis in 2016
- Exploratory knee surgery in 2009
- Working life brought mental health aspect which I had completely ignored earlier
- I don’t know a lot about Ankylosing Spondylitis. I know I have the gene varient associated with it and will finally be seeing a back specialist soon. In my personal experience, here in the US, this has been a long battle. I have had back issues and pain my entire life, and at 36 I am just now finally seeing a specialist for the first time. Can you share your diagnosis story and a brief description of Ankylosing Spondylitis? *This question was cut due to time, so we will dive into this on another episode with Johanna!
- Autoimmune disorder, progressive chronic condition mostly affecting the spine, also hips ribcage and shoulders, uveitis /iritis so infection in eyes
- I too have HLA-B27 gene positivity
- Campylobacteria, reactive arthritis is diagnosed when your arthritis is a reaction to an infection.
- Knee surgery, methotrexate, sulfasalazine, oxiclorin
- Salmonella also set off my symptoms when I was in China as exchange student
- What is the healthcare system like in Finland?
- First three paragraphs are very informative!
- Mental health is such an important yet under recognized foundation of wellness. Can you share your experience with anxiety, depression, and burnout?
- First burnout at 18 – hospitalised for pneumonia
- 2017 1week sick leave
- 2018 2 weeks sick leave for exhaustion, started therapy
- 2019-2020 2,5 months sick leave, depression, burnout
- 1st year in therapy I accepted my illnesses
- 2nd year was about coping with work and relationship troubles
- 3rd year self awareness and knowledge
- Acknowledging the limitations of your illnesses and that they exist. Like epilepsy, it doesn’t present symptoms but it’s there.
- Let’s lighten things up! What inspires you? What you do for self-care and for fun?
- Inspiration from other spoonie community people
- And for fun and self-care I’m still learning 😛
- What words of wisdom would you share with anyone who is newly diagnosed?
- Self empathy
- Acceptance and mental health should be considered first
- It’s not a death sentence