Project Patchwork: Every scar tells a story
An online sanctuary for women suffering from hidden conditions. A place where you will feel less like a patient and more like a person.
Vision - To help women connect with other women who live with invisible conditions.
Mission - It’s important women are supported emotionally not just physically and who better to do that than their equals.
What the world is saying about this mission:
“Wendy has created a sanctuary for women with hidden conditions.” - Sophie Smith, EDP journalist
“This is phenomenal, and exactly what is needed on the internet. A safe haven, a community for women to be able to be themselves and discuss topics usually hidden for fear of judgement.” - Amyna Ftouni, Detroit Psychotherapist
“I am so grateful people are sharing that it’s okay to not be okay and to talk it out in a supporting environment. Wendy is normalising moments in time we all go through as invisible illness sufferers.” - Donna Hartt, Invisible Illness Sufferer
“Excited to see what you do!” - Jessica Murnane, Author of One Part Plant
“Wow, you have created a beautiful thing out of so many hardships. Thank you for sharing and creating these spaces for women like you, like me.” - Andrea Royal, Invisible Illness sufferer
“This is incredibly powerful, I’m telling everyone I know about Project Patchwork.” - Jennifer Reed, Invisible Illness sufferer
“Wendy is on a mission: to find a safe place for women suffering just like her and me. I am honoured to be a part of this community. She has helped me in more ways than she will ever know. Project Patchwork is the exact type of community we sufferers need.” Kimberli Davino, Blogger & Columist for The Mighty
Welcome to Project Patchwork.
The sanctuary for women with hidden conditions.
There’s no promise of a cure but we do promise support and kindness.
Project Patchwork was my vision and I’m Wendy England - a barista from Norwich, UK. I’m not a medical professional, I don’t have any degrees and never worked in the corporate world. I’m just a woman who has experienced life at a different level to most. Mostly I spent it in pain.
I know all too well what it’s like to feel isolated by chronic illness after suffering with undiagnosed conditions for nearly two decades. I believe women with invisible illnesses are living in unwanted bubbles, wrapped in cotton wool, feeling very alone, wishing someone, anyone, understood them.
Through Project Patchwork women from all backgrounds, all health conditions, can come together to learn from one another. You can find women who suffer like you do so you may feel less alone in your fight.
Project Patchwork abides by its core values
… Kindness … Support … Safety
It’s founder, moderators and members promise to show kindness, compassion and empathy towards each other, the site and when speaking about the site or its members outside of these pages at all times. We promise to be mindful of the feelings of members when in communication with each other by moderating our intent behind the messages we convey.
As an inspiring community you will benefit from a moderated community of women who are on the same path as you. You will benefit from access to hosted Q&As and discussions with resident guest experts who bring unique perspectives and new education to the table. You will have access to fact sheets from charities about various different conditions all in one place. No more falling down endless rabbit holes on Google trying to find the correct information. Knowledge is important but so is your emotional well-being and this is the primary focus of Project Patchwork. Supporting a woman who is feeling isolated by pain can mean the difference between life or death in some cases and this is a very important issue to address. You will always be encouraged to see your general practitioner before taking onboard any advice given by a member of Project Patchwork.
As Safety is a core value, you will be encouraged to report posts you don’t feel align with the values of the site and not to comment on them until a Moderator has done so. Sometimes it’s all too easy to misconstrue typed meanings and all it takes is for a team member to gently ask what the intent behind a post was to avoid any negative backlashes. This way all members feel supported and member suspensions can be avoided.
The forum is the sanctuary for you the member. A place where you are free to be yourself, to ask the questions you may fear to ask a loved one or your GP. Membership to Project Patchwork allows the forum to stay secure, free from trolls and judgement; free from the scary medical jargon which keeps you feeling like a patient rather than a person. Moderators will be hired from within the community once it’s foundations are firmly rooted on the web and will be overseen by Project Patchwork founder, Wendy England.
Your life experience speaks louder than a doctors diagnosis.
Project Patchwork promises to … share real life experiences … provide a safe space … raise money for charities … give up to date advice on conditions … give support through kindness and with compassion at all times
You are a project of self-discovery, held together by your emotional and physical patchwork of scars; you deserve to be a part of our community. You have battled, cried, screamed and sighed, now it’s time to rise. Lift your head up and smile because you are worthy of support and wise enough to bring your knowledge to others.
Allow the Project Patchwork Community to invite you into its open arms and hug you gently, so you may feel safe and supported knowing you are accepted right now, today.
Life is for living and you deserve to live it well, within your limitations. Why live a normal life when you are already extraordinary?
I remember feeling petrified the first time my period hurt so much I couldn’t move, my mum saying I must be giving birth because it sounded like I was having contractions - I was 14. My Doctor said it was normal to have pain during my period and told me to take a paracetamol.
I felt fortunate that the pain didn’t happen every month and felt silly going back to my Doctor when I couldn’t cope. I would be met with pity and slight annoyance, as if I was wasting her time.
Over the years I would try every type of contraception, some so painful to even have put in that I’d try to avoid having it done until I could no longer cope with the pain of my period. I lived in a constant state of fear, worrying about pain, with no one I could turn to for support.
When I developed anxiety during my high school exams my Doc put it down to stress, I was 16. I would have panic attacks which would stop me from doing simple things like going to the beach with my family. There seemed no reason or pattern to them, but being in pain 2-3 weeks every month didn’t help.
When I was 28 I collapsed at work.
When I was 30 I lost the ability to digest dairy.
It took 16 years before I received my first official diagnosis. I had to endure pain so extreme it verged on the last stage of labour nearly every month, for 16 years. I would pass out going to the toilet. I had to endure panic attacks that would stop me from being able to work. I hated myself.
I gained a ton of weight, no amount of dieting helped shift the pounds and too much movement would send a shuddering pain throughout my abdomen.
I had known, through my own research several years prior to my official diagnosis, what was wrong with me - I had Endometriosis. I had tried so hard to be heard by countless GPs and specialists. One female medical professional laughed in my face when I dared to suggest I might even have Adenomyosis, then brushed me off as if I hadn’t spoken.
After my second laparoscopy I was told I did indeed have potential Adenomyosis, but also the Endometriosis I knew I had was in fact Stage 4, an advanced stage which saw my uterus attached to my bowels and I’d need extensive surgery soon. On top of this I had been suffering with rupturing ovarian cysts for years, my right ovary scared from the ruptures causing free flowing fluid in my abdomen and pelvis. That explained the collapsing at work.
I chose to have a hysterectomy, the only known cure for Adenomyosis, aged 32 and childless, plus excision of Endometriosis.
I’d like to say that was the end of the pain, but the torture was only just beginning.
One week after my hysterectomy I was back in hospital after gushing fluid from my vagina. I was left in A&E for over 8 hours sitting and laying in my own urine. Not one doctor was concerned with the condition I was having to wait in. I had to find my own towels to put underneath me.
After a scan and several painful examinations I was told I’d developed 2 fistulas between my bladder and my vagina from a surgical mistake during my hysterectomy the week before. A catheter was put into my bladder and I had to stay in the hospital for a week while they monitored the amount of urine I was losing. Eventually I was allowed to go home but I had to learn how to care for my catheter which was about to become a permanent edition for several months.
Unable to work, barely unable to leave the house, I became isolated and depressed. I sort out friendships online but unable to find the right support decided to start up my own community called Endo Education.
Online I was excelling, personally I was crumbling.
I sunk into a deep depression and scared myself with my thoughts so much that I took myself off to therapy. I taught myself to mediate and bought all the self-help books. I was losing lots of weight due to my bladder medication so I tried to eat better too. By caring for myself I discovered self-love and self-compassion, I rediscovered my spirituality and an idea struck me.
What if what I needed is what every woman is needing still?
That need was a safe place to open up about my experiences living with chronic conditions. A place where kindness was valued and support was given by women who could empathise.
That seed grew over the 7 months I was catheterised in 2017 and blossomed into Project Patchwork - The sanctuary for women with hidden conditions. A place where every scar tells a story.
You can access the website now www.theprojectpatchwork.com to see for yourself that this is really going to happen for you.
- £5000 - £10,000
Thank you ever so much. This will help in the creation of a fully functioning forum-based website which will be able to support thousands of women with hidden health conditions. Hosting a website of this size can cost between £500 & £1000 per month. By exceeding my initial start-up costs from Kickstarter I will be able to cover these costs for the first 6 months while Project Patchwork finds its threads.
- £10,000 - £20,000
It’s time to rise up! By reaching this stretch goal I will be able to cover the maintenance costs for one year plus and make Project Patchwork my full priority. This will allow me to spend more time in the forums supporting women and discovering new ways to expand Project Patchworks reach through advertising.
- £20,000 - £30,000
Together is better. I am only one woman but if I reach this stretch goal I don’t have to work alone. I’ll be able to hire a team of moderators for the forums straight from the community itself, as well as writers, designers, and managers to create a more safer and connected environment for our members.
I am incredibly grateful to Danielle, Libby and Fern who’s continued support and care inspired me to start this venture. We’ve been through a lot haven’t we girls? Stuart, my love, who wouldn’t let me quit when times were hard and helped amplify my voice so I could be heard when medical professionals were failing me. My mum for being my helper on the photoshoots and and making everyone laugh. To all the women in my Endo Education Community on Instagram who have seen my scars and shared with me theirs, I thank you all from the bottom of my heart because without your friendships I wouldn’t have seen how kindness is still a quality women are seeking in their lives.
Thank you xx
Risks and challenges
The risk is very low. As the site has already been mostly funded out of my back pocket and with the budget based on this Kickstarter funding, Project Patchwork can execute shortly after Beta trials ends.Learn about accountability on Kickstarter
- (30 days)