This week we caught up with Lindsey Fraine – a helpline volunteer for Endometriosis UK. Like many of you, Lindsey has recently had the news that her surgery has been cancelled due to the situation with COVID-19. In today’s blog, she explains how she’s taking positive steps to help cope with these unprecedented circumstances.
Lindsey - could you tell us a little bit about yourself?
I’m a film producer, avid cyclist and in my spare time, work as a telephone support volunteer for Endometriosis UK.
What inspired you to get involved with Endometriosis UK?
After living with endometriosis for thirty years I’ve learnt a lot about this disease and how difficult it can be trying to cope with its negative effects on life, it can be extremely isolating, so I wanted to help other women who need a space to be heard and to be a part of a network of volunteers who are available for other women to share their experiences. Endometriosis UK was the first port of call for me on diagnosis, your website taught me a lot about the disease and I guess I wanted to give something back for all the brilliant work you do campaigning for us.
You’ve had a really tough journey with your endometriosis. How do you manage to stay positive?
I don’t always feel positive, but campaigning for change really helps. Being heard after thirty years of my pain being ignored is hugely positive. I’ve had people thank me for posting stories on social media about endometriosis because they’d never heard of it and have thought about other women in their life potentially suffering with endo as a result. So if me shouting about it gets more people checked and diagnosed earlier, then that makes me happy. And of course, riding my bike and being out in the fresh air also massively helps keep me positive and helps me build strength and confidence, which are two things needed to keep fighting endometriosis!
Do you have any tips for people who are self -isolating at the moment and perhaps struggling to stay positive?
Good question, I’ve just had my surgery cancelled and it’s a huge disappointment. At first I battled feeling disappointed and then feeling selfish for feeling disappointed given the extent of the current situation! It’s a difficult, unprecedented time to manage, so don’t be too hard on yourself, however you feel and respond to the news is totally acceptable. I allowed a few tears to flow and just let the sense of disappointment gradually pass. Uncertainty is very difficult for people to manage, but I do think people with endo are experts in uncertainty, so this is just another hurdle in our care. There are a whole load of people waiting for operations, living in pain who all now have to wait longer which is so sad, but there’s absolutely nothing we can do to change the situation so try not to fight it and take it easy and rest as much as possible, conserve energy. I’m trying to find daily distractions by painting, reading, walking and cycling. I try not to consume the news too much, once a day is enough for me and I check-in with friends and family as much as I can. Find the things which distract and bring you comfort until we come out the other side of this difficult time. And of course - call the helpline if you need support, Endometriosis UK have extended the opening hours to help people at this difficult time.
You recently met with your MP – could you tell us a little bit about how this came about, what motivated you to do this and what issues did you raise with them?
Yes, I decided to meet with her partly because of my own experience but also because of the heart-breaking stories I hear every week on the helpline. I spoke with Endometriosis UK and asked for advice on how to be involved with more campaigning - they suggested writing to my MP, which I did and a few months later I went to Portcullis House and met with her to discuss some of the battles we face living with endometriosis.
It was hard to know where to start, but I decided to focus on several key points. I used my own story, which is consistent with most other women with endo, so I was able to use my own story to generalise what is happening and the extent of the problem. I raised issues around women being all too often dismissed for their pain, the need to be seen by an endometriosis specialist, the need for proper referral pathways for all types of endometriosis, and concerns around isolation and the need for greater emotional support for those with endometriosis. Continually facing challenges with the system in seeking help for endometriosis can have a crushing effect on a woman’s self-esteem, self-worth and drive. We begin to internalise it and don’t believe we deserve any better. I believe women being diagnosed with endometriosis need to be made aware of the reality of the condition from the beginning, not brushed off as if nothing ever happened.
The stories I hear on the helpline break my heart; women are in pain and they are often not getting the support they need to manage their condition. They need emotional support for this as well as treating the physical symptoms. In the recent Endometriosis UK & BBC survey, 13,500 women were interviewed and half of them admitted to having suicidal thoughts. These statistics can’t be ignored and things have to urgently change.
You have been really actively involved in campaigning with Endometriosis UK – what changes are you hoping to see through the inquiry led by the APPG on Endometriosis?
For me, the key things which need to be addressed are 1) Joined-up care - Doctors and specialists across the board need urgent training in identifying and diagnosing endometriosis outside the reproductive organs. 2) Women’s pain to be taken seriously and believed from the very beginning and 3) whilst we wait for more funding for better treatment and ultimately a cure, there needs to be emotional support available for women battling with endometriosis.
What has having endometriosis taught you about yourself?
It’s taught me so much! Mostly, it’s taught me to be kinder to others because you never know what someone else is dealing with. And it taught me to shout about women’s health and speak openly about periods and period pain to anyone who will listen!