As you may have read either on Facebook or this week’s Life at the Patch update, I had an interesting conversation with a journalist last week regarding Endo and how it had affected my life, particularly in terms of my choice to leave my job and start my own business.
The conversation I had made me realise two things: The first being that I really am incredibly passionate about spreading awareness of Endometriosis and the second being that other people see me as “inspirational” in the way that I view my own battle with it.
I hope this doesn’t sound like I am blowing my own trumpet, but I am pleased to hear that people find my way of looking at things “inspirational” and as such, I feel I should be doing more to spread awareness in a way that looks at both the positive and the negative sides of the condition.
I include the above photo, not because it is pretty, but because it shows just how grey, drawn, ill and exhausted a bad day or few days with Endo can make you become to give you some perspective…
I’m not going to lie – Endometriosis can be HELL. There are many times in my life that I have felt “let down” by the condition, a recent example being the fact that I was perfectly competent at my old job and could have gone a long way with that career, but my health wouldn’t allow it. However, I refuse to become a “victim” of life and have chosen to make something of it. So, in choosing to give up “conventional” work, I have chosen to create my own “career” by devoting my time, energy and skill into creating a safe and happy place for myself and my readers.
Life, to me, is about seeing a possibility and making it work. It is about dreaming big and, if those dreams fall apart, creating a new dream. That doesn’t mean I don’t find it hard sometimes – by choosing to give up work I effectively accept that we will never be as financially secure as we could have been had we both worked, and our own home, holidays and a better, more fuel-efficient and eco-friendly car are out of the question. But, happiness and health is far more important and as long as we can afford the bills, then we will survive. I may complain about not having enough money for that pair of shoes I love, the trip to visit a friend abroad or the fact that I *still* cannot afford to learn to drive, but I’m not going to let those things darken the beauty that is all around me.
When I started Amanda’s Patch, I didn’t really know where I would go with it, just that I wanted, in fact *needed*, to create something. I am a creative person, and by doing what makes me happy I feel better – free therapy, I like to call it. I still don’t know exactly where it is going, but it is exciting nonetheless. And since my chat with the journalist, I suddenly realised I wanted to make Amanda’s Patch (the shop and the blog) a safe place for people to visit, share experiences, learn and express themselves. The shop is already growing with the works of others, and I do believe I can see a whole new section for the Patch – “It’s End-O, not ‘The End'”
Stay with me, dear readers, as I develop the Patch further. Dreams are coming true every day and I am loving every moment. But life has its challenges and Endo is one of mine. And so, from time to time, you’ll find it cropping up in what I’m doing, from sharing experiences of complementary therapies to the fears and struggles related to starting a family. Too often, the “taboo” of menstrual disorders is left unsaid, or only ever given a voice within it’s own subject area (i.e. blogs or networks devoted entirely to it)… I decided a long time ago that I wouldn’t keep it a secret from those around me, and that includes those I only know on here. I’m not about to become an “Endo blog”… but Endo is a part of my life and so it will be a part of this site, a beautiful, honest and inspiring part, I hope!
2 Comments
Jeanne
June 8, 2010 at 5:38 amAmanda,
I think it is wonderful beyond words (!) that you are incorporating your experiences as an endometriosis patient and your desire to spread endometriosis awareness into your new venture here at Amanda’s Patch!
I can see in that photo that you are not feeling well. 🙁 I think it’s great that you are including such a photo to show what’s REAL.
It’s all-too-easy to post pictures taken on the “good days” (“good” being a relative term, of course). It’s harder to post the pictures taken on the “bad days”.
Like you, I have tried to share photos that help people see me at the “bad” times as well as the “good” times. I think that’s important. So, good for you!
Obviously you know where I stand on the topic of endometriosis awareness in general. The way in which you are integrating your desire to shed light on this condition (affecting 89 million women and girls) into your new business venture is just wonderful!
I’m so proud of you for de-stigmatizing endometriosis (so needed and important!) and getting the word out about this common but all-too-commonly misunderstood disease!!
Way to go, Amanda!
Jeanne
P.S. I can’t wait to hear about your conversation with the journalist!!
sheila
June 8, 2010 at 1:31 pmI really do think you are an insperation-so kind and together during this experience. I wish i could be as calm and thoughtful myself even though i dont have endometriosis we have been having a hard time conceiving, and i have at times just fallen apart.
You are a star!
Sheila