Welcome back to the ‘Meet my Peeps’ Guest Series. I met Jenna Lovell through an online Chronic Illness bloggers group set up by Carly Findlay. Jenna lives in Tasmania, a part of Australia very dear to my heart. When I put the invitation for my series of Guest Posts, Jenna jumped in. I am so glad to bring your her words and wisdom. Through her blog, coaching with clients and speaking at events and conferences, she shares her story of living with a rare genetic illness and how she has changed her health and life. Jenna loves mail, so pop over to her corner of the internet and say hi:
Thanks Jenna for contributing, I really value your input! -Rach
I was 16 when I was diagnosed with a rare, inherited bleeding disorder called type 1 Von Willebrand Disease. Like those with haemophilia, my body doesn’t produce enough of one of the essential clotting proteins, and I’m susceptible to bruising, nose, throat, gut and colon bleeds, and as a female with this diagnosis, my periods are severe in every sense. While I’d definitely invite you to take a read of my physical symptoms, Rachel has invited me to share with you my other experiences – managing the mental, emotional and spiritual challenges having a genetic illness throws your way.
This story really starts long before my birth, with my mother’s experiences. While she experienced all the same symptoms I do, she was never diagnosed. She had to struggle through monstrously difficult periods, excessive bruising and other symptoms without a diagnosis or a hint of medical support. I’ve found out in recent years that for women of her generation, that was far from a rare experience (though thankfully its pretty rare now here in Australia). Fear and anxiety about engaging with doctors is common among those of us who had to wait until later in our lives for a diagnosis, which makes getting care and support an anxious task, despite its necessity. So after a few years of horrible periods myself, the decision was made to ask doctors about it, but that definitely brought nerves. We knew my mum had never been given the attention she needed, and had no idea if I’d get the right support or not.
Luckily, my GP is fantastic, and referred me to two equally skilled specialists who dispelled any fears or concerns about their approach, and were able to provide me with my diagnosis. Of course being a teen at the time, my struggles didn’t stop there. It took around 2 years to find the right combination of medications to manage my bleeds and for them to settle down to the most under control point I’ve had them, but in that time, I had a lot of time out of school, I missed social events with friends, I had several teachers talk to me about my attitude and commitment to school work, which prior to my diagnosis I had no good reason why it was slipping. I had the worst of my symptoms during the most important two years of high school (years 11 & 12), so I have no doubt my illness during that time impacted my final grades. Its only been in the last few years that I’ve made progress in creating and maintaining new friendships – after struggling with this in high school due to my constant absences and subsequent loss of friends (and even relationships with my relatives). Even after being diagnosed, I struggled for a number of years to explain my diagnosis and symptoms given the primary issue I deal with is my menstrual bleeds. I felt embarrassed to talk about the details, to mention my condition to others, even when it was needed because of the social taboo about talking about our reproductive systems.
It will come as no surprise to you that as a teen and young adult this put a massive pin in any plans to have dates! I often find it ironic that the primary class of drugs used to treat female bleeders is contraceptives – trust me, with periods like mine, you don’t spend time thinking about sex or anything related to it! I was also scared and worried about telling boys and men about my diagnosis and symptoms for a long time – would they understand it, would they think I was gross, would I have to explain far more to a male than a female, thus extending the time I was talking about my periods to a male, probably in public!
I also went through a period of almost 10 years after my diagnosis that can only be described as my cognitive dissonance days. While I don’t skip taking my medication, for roughly a decade, I continued to have period-based symptoms, large unexplained bruises, and an unrelated but constant string of colds, flus, chest infections and even a few rounds of pneumonia. On paper, I may have looked ‘healthy’ – my weight was in normal ranges for my height and age, I was diagnosed by treated for my bleeding disorder, but I was ignoring a lot of signs. Clearly, my immune system was struggling, and I just didn’t feel great – inconsistent energy and frequently tired, struggling with an undiagnosed gluten sensitivity, and I felt lacking in strength, both emotionally and physically. At the root of this was deep seated apathy – I took no care of my body and I didn’t listen to any of the (now glaringly obvious) signs it was sending my way. I didn’t care about my health that much because I didn’t think I needed to.
So what changed for me?
A number of new experiences in the last few years have seen me revolutionise my relationship with my body, health and myself:
- I’ve become connected with the patient support community for people with bleeding disorders. I have to say this was a turning point in me finally accepting my condition and myself. There’s nothing like other people who go through what you do, they just get it. Some of the people I trust most in the world come from that community, and I can say I wouldn’t be the same without them.
- A local Hobart-based business, Barrecode, also has a lot to answer for! This low-impact strengthening workout has not just seen my physical self improve its condition, but I now also trust my body to do physical things, and know it can be challenged and not fail on me. The owner, Christie, also introduced me to new eating philosophies that have supported my exercise and general health, but also allowed me to better understand my body and its needs.
- Meditation. Bet you’ve heard that one before, but by gosh has my personal quiet time made such a difference! In a physical sense, I use it to manage pain, but its also been fundamental in me coming to a new relationship with my condition, with experiencing pain, and developing my intuition which has helped me make better decisions in all parts of my life.
The biggest thing that has changed for me? I now trust myself – wholly, completely and over anyone else. I trust my body and I can work together to make me healthier every day, and my instinct and intuition will always provide the best outcome.