When I first started to write the blog, I had only just joined the EAI. I started reading the info but mainly I started reading other women’s posts, and I started to recognise myself in so many of them. I also started to see how much support the women gave each other, and for the first time in a long time I knew I was talking to women who “got it”. After a while I started to add replies and share bits of my story, my experiences up until I got my diagnosis and the treatments I had tried since. The Admins encouraged me to write, and I surprised myself. The writing just seemed to flow, not that I’m a great writer but it was like the dam had burst. Maybe it was just that I had time on my hands, but mainly it was because I had a safe space to share those thoughts, with people who would understand. In many ways it served as a therapy, I could vent, I could share and in doing so I was able to move on. Those embarrassing experiences as a teenager were no longer as bad, because most of the women had the very same ones. Endometriosis has affected my life in many ways, long before I could put a name on it, so having an explanation for so many things was a relief, and I knew for them it was the very same.
A little over a year ago, I took on what was supposed to be a weekend job, to keep me sociable. Working for yourself is great but when it’s the kind of job that has a high and low season, it can be even more isolating. That job turned into a full time one during the Winter and the hectic Christmas period. I was suddenly busy, with very little time on my hands, and I didn’t write as much. But I also found I had less to say, the writing had served its purpose and allowed me to put those things to one side.
Now a year later, that has turned into a different full-time job, with (relatively) regular hours and regular pay. When I decided to take the job offer I had to sit down by myself and make a list of pros and cons, and decide did I want to step back from my own business and seriously think about this job. One of the pros was the people I work with. In an unexpected place, I had found my tribe. It’s as far from teaching and kids as you can get, every day is different and sometimes it’s just crazy but I enjoy it and on the mad days it‘s the other people that gets me through. Feeling as though you belong, feeling as though people understand you and appreciate you, that’s what gets you up in the morning, that’s your motivation.
For weeks I’ve been trying to put my thoughts into words, well understandable words at least. It’s been three months since the EAI Information day and it’s still on my mind. I could tell you how informative it was, how interesting, in some ways enlightening! I could mention how well organised it was and how helpful everyone was in how to get there. How to survive the day, even down to the hotel who adjusted the menu in the restaurant to accommodate the women on special diets. Overall the speakers were interesting and well-informed and spoke to their audience rather than at them. But those are not the reasons the experience has stayed with me. I couldn’t put a name on the feeling, or the result of the day, but I know what it is now. I left that day feeling empowered, feeling I had options, feeling even more so that I had support.
Recently I was sitting in the hairdressers, pretty tired so instead of too much conversation I was just flicking through the glossy magazines. There was an Awards ceremony by Glamour Magazine, where women from many different backgrounds working in different areas were acknowledged. Jennifer Hudson was recognised as trailblazer, and there in a few simple lines she summed up exactly what I felt about the EAI Info day.
“To be able to give women a platform where we can sit in rooms like this and see reflections of ourselves and what we can do – THAT inspires me.”
There she hit the nail on the head, that’s what the big deal was. It was having a room, full of women who all have Endometriosis, who all deal with it in its various forms, all getting on with life and fighting to make that life as livable as possible. The sense of empowerment that we all (I’m sure!) left with that day is something you can’t quantify, something you can’t achieve without the women themselves deciding to be present, and they definitely were that day. We underestimate the power of a group sometimes, the strength that be derived from a shared sense of understanding. Those women weren’t there to change my life, nor I theirs, but the important part was that we got it, sitting there knowing that the person beside you gets it, in fact every woman in the room does, has a very strong effect… There were costs involved for everyone who attended that day, bus fares, petrol, hotels for overnights, babysitters…. but a powerful moment in one’s life is priceless … and well for everything else, there’s Mastercard…😉
We’ve all had those weeks where it seems that none of the stars are aligned, no prayers are being heard or all our bad karma has come back to bite us in one go. I felt like that in the week leading up to Info Day. New job started, and after 13 years of working unsociable hours, or 14 hour days, or two jobs, sometimes 6 days a week, there was a bit of adjustment to working 9-5 (First World problems I know!! 😉) But I had great plans, Food Plan ready and I started back at exercise class, going to start as I meant to go on! Tuesday morning that all went out the window with some sort of bug or virus that involved me sitting in the foyer of a hotel (at a business meeting) while I threw up and tried not to pass out… By Friday evening I was just wrecked because on top of all that, my period arrived early, as it inevitably does when I have something planned. It seemed like I was destined not to get to Dublin on Saturday morning. But hell hath no fury like a woman in pain! When the alarm went off before 6am on Saturday, I didn’t quite leap from the bed, but I did roll myself out of it fairly lively! Nothing would have stopped me from getting there, afterwards I was so glad I did.
How can I describe the feeling of being in a room where everyone shares your secret, where everyone knows what it’s like. For once you’re not sitting there wondering does anyone else feel like I do? Does anyone go through the random symptoms and bursts of pain that I do? Does anyone else find themselves standing in their kitchen at 4am nuking the heatbag because the pain won’t allow them to stay asleep?
There is something about the collective power of a group, of finding your tribe. People negate support groups, particularly online ones. That it’s faceless, impersonal, just a group of people moaning together. They couldn’t be further from the truth. The first person I met in the hotel was one of the EAI admins, I’ve read her story which she has bravely shared in the paper and online. I can only imagine half of what she’s been through. Yet there she was bright and bubbly first thing in the morning, having the chats with everyone who queued up for raffle tickets. Every time I passed the table, she’d have a joke or comment and it seems we don’t just share the world of Endo, apparently we both have great taste in hand-made Irish accessories…who knew! I admire her for her positive attitude and to still be that way at 5pm that evening, despite I would say being very tired.
Even though it should be easier at this point in my life, walking into a room full of strangers is never easy. But the women in there made it so. As I came into the back of the room, two women looked up and smiled. I recognised their faces from their Facebook profiles, they had offered solutions to my queries on a few occasions, they had agreed with some of my comments to others, or simply they had just sent messages of support on a bad day of pain. We had similar experiences in some ways and we have common goals in our near futures. Neither were what I expected but not in a bad way. One reminded me of my sister, tall, confident and well able to account for herself. You’d never guess to look at her how much pain she can be in, that she too has the invisible disease. Even though she’d never met me before, she shared her experiences with doctors, listened to mine, and we choose the same options for the afternoon sessions together. The other woman, petite and pretty, and very easy to talk to, was again different to what I had expected. I’ve read lots of her comments in the group, I know more of her story, her battle with this disease and like me, her desire to become a mum. Maybe what struck me was that this small gentle creature is so strong in dealing with her disease and how it has affected her life, and that strength comes across in her comments online. Weeks later going through the ups and downs of self-injecting medication and early morning scans, her messages of support, her check-ins with me were invaluable, she barely knew me in some ways but she knew it was going to be a tough week. While I had support at home, it’s not the same as someone knowing exactly what it’s like because they’ve been there themselves. I could ask her questions I couldn’t ask others, I would take her advice because she knows what is involved.
Training to be a Call-Facilitator at Childline, I learned to listen in a different way, but I also learned the value of just listening. Letting someone just say it aloud, in a safe space, without judgement, without correction. We all tend to want to sweep in with a solution. Sometimes there just isn’t an immediate one. One of the aims of Childline is to empower the children to make their own decisions, to feel as though they have a role to play in how their own lives pan out. As adults we need that too. When you have an obvious illness, people know what to do, how to react, how to help. With an invisible one such as Endometriosis, it’s not so easy and it’s not so obvious as to when people are actually in pain. It’s often just easier to pretend it’s all ok. That’s where having a support group is really important. The EAI are not just about a space to moan and complain, it’s about educating the women regarding their disease, how they can improve their quality of life, and encouraging them to push for better care with doctors who know what they are doing. The EAI and the amazing women that are the admins, provide immeasurable support and endless information, that empowers each and every woman in that group to help themselves. That kind of strength is priceless…
So while thank you doesn’t begin to cover it, I’ll say it all the same, a very big thank you to the EAI, to the powerhouse women who run it while working full time and dealing with their own disease, thank you to the other women who travelled across the country that day, to the women who smiled when I came through the door (you know who you are), to the speakers, and to all those who directly and indirectly support the EAI, you are very much needed and even more appreciated.