I recently got to do a great interview with a lady from a private support group who run their own quarterly newsletter for members. They’ve kindly let me repost it here for you to read. – Emma.
Emma Reilly is an Entrepreneur revolutionising mental health treatment with her new Company Myndr which she founded in 2018 with Lizzy Hodcroft. Myndr offers mental health workshops and an app which lets you create bespoke mental health action plans. I spoke to Emma when she was looking for volunteers for a mental health survey some months ago. I learned she has Endometriosis just like myself and many of our readers. She agreed to be interviewed about her experiences and her plans for the future.
Can you tell us a little about yourself?
My name is Emma and I’m from Newcastle upon Tyne. I’m 38 years-old but I’m totally aging backwards on my next birthday. I co-founded a tech startup in October last year with my business partner Lizzy. We are developing a platform which we believe will revolutionise how we treat mental fitness and mental health in the future. I’m a huge advocate for both mental health and disability, having faced both in life. I also have Endometriosis and Polycystic Ovarian Syndrome (PCOS).
For our readers who don’t know what these conditions are would you mind explaining them?
Endometriosis is a condition where the lining of the uterus (the bit that thickens and breaks down during a period) grows on other tissue within the pelvis. It reacts the same to hormones every month which cause you to shed the lining during your period. Only this tissue has no where to go so it causes inflammation and scarring. PCOS is a hormone disorder which causes cysts to form in the ovaries.
When were you diagnosed with both conditions?
I was diagnosed with Endometriosis about three years ago during a laparoscopy. PCOS was confirmed a year ago during my third laparoscopy.
How did Endometriosis manifest itself in order for you to seek treatment?
I woke up one morning with severe stomach cramps and symptoms not too dissimilar to a tummy bug so I put it down to that. But it lasted for weeks at a time and all standard tests were coming back normal. This kept happening, more and more frequently until it was monthly. Some initial tests showed I had elevated inflammation in my bowel so my GP was convinced it was Crohns Disease. However, that was eventually ruled out. I ended up going in for an investigative laparoscopy where they found I had several bowel and kidney adhesions and scarring. Endometriosis was found which was removed.
What is the long term treatment for Endometriosis?
Unfortunately Endometriosis is incurable and can only be controlled with hormone treatments and surgery. I have tried things like Zolodex, Depo Provera and now I’m using the Mirena Coil.
Are they helpful at all?
Not massively in terms of pain. Depo was great because it stopped my periods completely, but my bowel symptoms persisted on a cycle. I stopped that just to try something else which is why I now have the Mirena Coil. Again it hasn’t helped massively with pain but my periods are pretty much non-existant. Zolodex puts you into a temporary menopause so you get the best relief from that. Unfortunately you can’t take it long term.
You have PCOS on top of this. How does this affect you?
For me its mostly ovarian pain, particularly my left side at the moment as I have a 2cm haemorrhagic cyst. My weight has been the thing which has affected me the most, physically and mentally.
A lot of women experience weight gain with PCOS?
Yes I’m part of a support group on Facebook and its the thing that gets discussed the most. A lot of women, like myself, develop insulin resistance with PCOS. It means food isn’t turned into energy and is instead turned to fat. It usually develops into Diabetes and this is something I’m being monitored for. I’ve tried all kinds of diets and exercise but it never makes a dent in my weight.
Is there anything which can be done to help weight control?
So there are a couple of diets which are normally very good for PCOS so I’m about to give those a go. There are some medications I believe for reducing glucose levels. It may be something I have to try next.
You mentioned you had joined a Facebook support group. Is this something you find helpful?
Massively. I’m a member of a PCOS group and one for Endometriosis. Being able to talk to other women about problems you’re facing or even if you just need a good rant can be so helpful. Pain especially is such a lonely condition. Until you’ve had chronic pain you really don’t know what its like. So to have some where where I can go just to talk to people who understand is so important.
Has it affected your mental health?
Yes it has. Initially it was me dealing with pain and the fatigue which comes with it. I have always been quite an active, energetic person. I was quite agile and loved being outdoors and doing lots of fast and furious type things. Then all of a sudden my pelvis cramps when I walk too much, my fitness nosedives, my joints ache and I feel like I’ve aged about twenty years. Then when my weight kept going up and up it really hit me hard.
Weight is something a lot of women worry about. Being judged on how you look can really affect how you see yourself.
It really does. I had an experience not too long ago where some guy knocked into me on purpose and called me rolly-polly.
It was. It was completely unprovoked. I was just walking minding my own business with my parents. He was obviously having a bad day and took his anger out on me. But it stuck with me for a long time. It’s a massive fear to think people judge you over the way you look. Plus now that I appear at a lot of events I will often see photos of myself on the internet taken by people. My weight is the first thing I notice and I really give myself a hard time over it. I’ve absolutely lost all confidence in my appearance.
Do you ever feel like you’ve hit rock bottom with it?
I would have to say no, only because I’ve hit rock bottom before and I know I’m no where near there and haven’t been for some time. I honestly don’t feel depressed at all right now about anything that is going on. I have learned to take everything day by day. What I think I feel most is frustration. Frustration at my own body. But I really try to harness that energy as much as I can and divert it into action. Even though my weight loss is painfully slow right now, I have seen a big improvement in my fitness with regular exercise. So that keeps me motivated. Plus I’m super determined to give this new diet a go because I’ve seen the results its produced for other women in my position.
How do you find running your own business with your conditions?
I know I’m really fortunate actually to be doing what I’m doing. There are a lot of women who work in jobs where they don’t get a lot of support. I’m lucky to have some flexibility and a really supportive co-founder. But so far I’ve managed ok. I’m excepting a fourth surgery soon so I will have to take a little bit of time off for that. But thankfully all I need is a computer and internet connection and I can get a lot done from bed. I think the thing I struggle with most of all is the unpredictability of my condition, especially in regards to travelling. We went to Ascot recently for four days and as we were travelling down my flare up began. I felt pretty lost the first couple of nights because my family support network wasn’t around. But I got through and absolutely loved the experience. We will be going back soon and I’m trying to prepare myself mentally for that in the event of another flare occurring.
You’ve also experienced a lot of mental health problems in the past as well. Would you mind sharing a little about that?
Yes I was diagnosed wit a severe Social Anxiety Disorder when I was 18 after I suffered a nervous breakdown at University. It left me housebound for a number of years as I couldn’t access treatment for it. I had very severe depression where I did hit rock bottom a few times. I did things I regret massively. But, I kept at it and spent a lot of time on a group for people with SA. The people there really helped me to work on my own treatment plan. It took some time, but I did overcome it to become an Entrepreneur.
That is amazing. Is it something you still struggle with?
At times yes. I’m so much better now. I wouldn’t even answer the door or give eye contact then. But now I love meeting new people. I have Autistic Spectrum Disorder which makes certain social situations a little more daunting. I like small groups and quiet places to talk. Just because I suffer from sensory overload in loud rooms. But even now I still use the graded exposure techniques I learned to face things which do give me anxiety.
How do you self-manage your own mental health?
I’m really good at reading my own signs that I’m heading for depression or stress. I have things I turn to to try and pull myself out of it. Writing I find very therapeutic and listening to music is something which can really help me. I have a motivational song list on Spotify which really helps me. I also know that I’m the kind of person who needs quiet time to reflect and regroup. I need to have time alone, whether that’s just in my room watching TV, or walking somewhere. I know when I don’t do that my stress levels really build up.
Tell us a little bit about what you like to do in your free time?
Well free time is pretty scarce at the minute. I’m really creative so love to draw or make things. I’ve collected Lego since I was a kid. It’s such an expensive hobby though so I haven’t bought a new set for a while. If I ever become rich my goal is to have a Lego room in my house. But I also love the outdoors. I’m most happy next to water. I also love video games, particularly simulation type games or adventure games.
What is your biggest goal for the future?
Right now is to take Myndr forward. We really believe we have something that will change mental health for good. I’m also a serial Entrepreneur and my biggest personal goal is to create an outdoor brand. I had started something before Myndr began and I would like to take it forward in the future. I’d also love to travel more and being anxiety free when I do travel.
Finally, what advice would you give to someone who experiences chronic pain or illness?
I think the biggest thing for me has been learning to adapt to my conditions. Knowing my limits and not trying to force things. It’s just adjusting and finding out what are your new ways of doing things. Also find people you can connect with who understand. Not talking is the worst thing you can do. I tend to get lost in my own head when I do that and its not good for me or those around me. So definitely find someone through a group or a network who you can confide in.
- Dog or Cat: Dog. I’m allergic to cats – although they’re very nice! I love all animals.
- Film that changed your life: Jurassic Park. I saw it at the cinema and it was the first film which left me absolutely blown away
- Favourite book: Hitchhikers Guide to The Galaxy
- Top 5 dessert island discs: In no particular order, Nirvana – Nevermind, Fleetwood Mac – Rumours, Led Zeppelin – Mothership, Haim – Days Are Gone, The Prodigy – Music For The Jilted Generation
- What would you spend £1million on: I’d pay off the debts of my loved ones and then buy us a nice holiday home in Florida because we love it out there. I’d also buy lots of Lego.
- What’s the one thing most people don’t know about you: I studied Scientology for a period of time when I was younger.
- Most embarrassing experience: It’s too embarrassing to tell. I’ve only told a few trustworthy friends.
- What’s your best asset: My sense of humour.
- Biggest regret in life: Not saying yes to a WTA tennis coach when I was asked to join their girls academy. I was 11 and very shy.
- Proudest achievement: Winning Young Ambassador of the Year from The Prince’s Trust in 2015.