Ye Olde Cup and String
One of the best words to singularly describe endometriosis (if you can) is this: Debilitating.
Ironically, I am writing this blog to you sat in my PJ's (it has gone four o'clock in the afternoon) sat on my settee with 'Midsomers Murders' in the back ground. Tragic I know, and if I don't shower soon, mum will refuse to bring me anymore rose teas.
Disgusting. You just cannot find the staff these days.
Anyway, the point is- I should be in a summery suit today selling my little hind off at work today. But I am not. Instead my hind is losing the will to live listening to Inspector Barnaby and Co. Bare with me because even if you do not have endo, the same principles in this blog apple to anything you struggle with or problems you may have to over come...
So it is important that we have a support network around us at times like this. It doesn't necessarily have to be people with endo, although speaking to other people who know exactly what you are going through is beautifully cathartic.
When I was diagnosed at 14, I did not know what it was, let alone my peers who hadn't had any gynaecological problems, especially the boys! So I felt incredibly (and I mean that in its proper sense) isolated. And a bit like a freak. And the last thing you need on top of the pain and emotional trauma is self pity.
When diagnosed with endo it is easy to feel like a freak show. Now of course you learn that that is stupid, however at the beginning it is not like that. It feels like no one you come into contact with knows what Endometriosis is, which furthers the isolation and can belittle it and can be embarrassing like you are making it up (!).
To ensure I remained sane, I realise now that I built my own small, but solid network. An intimate few best friends who I was very honest with and could articulate, vent, cry, laugh, and fine solace.
Never let pride or fear keep you from being honest from your real friends. You soon learn who they are and what they are made of. Unfortunately not everyone steps up to the plate, but its not because they do not love you, but either their fighting their own battles or just do not have it in them to fight yours. Things like endometriosis equip you with the tool to be strong enough to those who need you, and that is a silver lining gift.
The more I started dipping my toe into the endometriosis networking warters via twitter, emails and attending events, the more fulfilling it became. I thought I had about made it in terms of having amazingly strong friends to support me, I thought I was sorted... But I found comfort that I didn't realise I could achieve from sharing my story and hearing others.
Be brave; take the plunge.
It isnt easy, your heart is on a platter to virtual strangers and sometimes there are hives of negativity. My advice is avoid the black hole cases like the plague; they are toxic. And do not become one. Those two simple rules should be enough to safeguard you.
Sharing your story can be very very draining so be prepared. Things are always worse when you are whoremonal and tired. And some days I just do not have enough reserved to tell my story. Be kind with yourself, strike a strong and healthy balance.
However I can honestly say that sharing my story is the key to my acceptance with it all. I was angry for quite a while- Why me? Why does no one know what endometriosis is when it has such a monumental impact on my life? So I decided to do something about it. I cannot take it away but I can ensure my life and the people in it never feel embarrased or uneasy, I tackled the elephant in the room and it is great to talk about it. I found talking about it liberating and a sort of therapy. If you haven't already, try it. I dare ya.
In the last few years 'Endometriosis UK' has undergone a huge change and offers far more to teenagers now than ever before (Beret's off to them). With support groups mushrooming, and an increasing online support network, things are heading in the right direction, however everyone can do their bit to aid this process. Raise awareness via your social media, offering your most positive and helpful nugget of knowledge and advice to those who need it- or just listening.
Chicks before Dicks.
Hoes before those pesky Bros.
You know what I'm getting at. Communication is essential to not only spreading awareness, but empowering fellow sufferers in the knowledge that you are not alone in what and how you feel, and what is amazing is that you do not need to explain in great detail because they know exactly what you mean.
An ineffable, universal understanding amongst fellow people.
Straight from the Endo UK website:
'Endometriosis UK Online Support Groups take place each month using Skype. The purpose of these groups to is provide a support and information to women who don’t have access to a local support group and feel isolated.
Each month our trained Online Support Group leaders choose a topic to focus on and discuss with group members.
How do I join an Online Support Group?
If you would like to join the Online Support Group, please email your name, skype username and the email address it is registered to, along with your phone number to email@example.com.'
If you are a teen with endo, and you'd like to partake in a online support group on skype with me- then just sign up here: http://endometriosis-uk.org/civicrm/event/info?reset=1&id=37#.U341k9q9KSM - But be quick as there are only limited spaces! I'll see you there!!
All my love,
Be strong and stay positive,
And if you would like to share your story with me, I love sharing with new people: firstname.lastname@example.org