endo awareness

All posts tagged endo awareness

Conference adventures

Published May 9, 2013 by crazyinpink

As a PhD student, the weeks blend into each other. I sink lower and lower behind piles of books I need to read and lists of sources I need to find grow longer. It is a strange thing, a PhD. You lose any concept of time passing. You only figure out it’s no longer term time when you venture into the library and there is a conspicuous absence of undergrads. There are no weekly duties like lectures, there are no monthly goals like essays, there is little face-to-face time with your supervisor or, indeed, any other human being if you’re not careful.

I don’t cope well without something to work towards. I know I have differentiation at the end of the summer but that’s months away.

So I set myself short-term goals. Within one month I wrote a 7000 word lit review, created a poster about my research and presented it with a little talk and wrote a paper for a conference. In hindsight, that was probably too much in such a short period of time.

Presenting my PhD research for the first time at a conference was scary. With all the setbacks, taking a month off for my op, organising my own conference, I felt I needed a push to get something down on paper. It forced me to do some research and think about it properly so it made sense. My title for the paper was the vaguest one I could think of so I could do anything with the paper within that vague area. The conference programme showed that mine was definitely the vaguest title. *proud*
I wrote the paper based on what I know so far. That’s not much, it must be said. I haven’t done that much archival research yet. But I was kind of pleased that at least I understand what I’ve done so far. I found it relatively pain-free to write the paper, though it ended up veering into the realm of intellectual history which I’ve never ventured into before. Intellectual history is concerned with ideas, how they filter through society and what motivates and cultivates these ideas into action. When I sent it to Best Friend to read over, he pointed out the intellectual history nature of it. I nervously asked if he thought it was okay. I didn’t want to embarrass myself talking about these big ideas if I couldn’t fully express them properly.

Paper written, we set off for the conference. Of course, both Best Friend and I were presenting at the conference since we can’t seem to do anything independently these days. We arrived a day early to do some sight-seeing. Early morning flights are not my friends and I was flailing by mid-afternoon even with all the random touristy things we were doing. On that day we visited a monument (up a stupidly steep hill), a graveyard, a castle (at the top of another hill), a cathedral and an art gallery. Not too shabby. Then we checked into our hotel and I had a nap while Best Friend practised his paper for the next day. We met up with another student from our uni for dinner and eventually, finally got to go to sleep.

The conference itself was grand. Only a nine to five affair, all postgrads so a sympathetic audience and only about thirty or so people. My paper went well and I got some really interesting questions that I was able to provide at least some kind of answers to.

My bladder, which is causing me problems at the mo, started to protest by the end of the afternoon and I ended up sitting awkwardly trying hard not to make it look like I was in pain from out-of-control bladder spasms. A lovely middle-aged man was talking to Best Friend beside me. He noticed my yellow ribbon I had pinned to my dress and asked me what it was for. I told him it was for endometriosis and then, seeing the blank look on his face, explained that it was an incurable medical condition which caused chronic pain. He asked if I knew someone who suffered from it and I said that I did. Best Friend was throwing me telepathic messages of ‘Please do not start talking about your ovaries.’ I was too uncomfortable to really keep the conversation going but at least he has heard of it now.

We wandered around the city, popping into the library (of course) and then back for dinner again. It was an intensely academic trip, even our dinners were spent with the two boys talking about history or theory (or football) and me absent-mindedly checking my phone or sipping juice, thinking longingly of sleep. But it was nice to have a little break from the routine for a few days.

Best Friend was on his best behaviour too. I was slightly anxious about us going away together again, especially since we couldn’t afford separate rooms. (Or, really, I couldn’t afford) But I needn’t have worried. He was a perfect gentleman and seemed to be looking out for me when he could tell I was getting sore or tired. He kept mentioning Bristol Boy as he isn’t entirely sure about what’s going on there. Neither am I really but Best Friend has a very basic understanding of relationships and in his head, I’m taken now so there are much clearer boundaries in our friendship than there were before. All in all, the trip went well, even though it did involve incredibly early mornings and a lot of walking.

But now…back to the books.

A hug of compassion

Published August 26, 2012 by crazyinpink

When an invisible illness controls your life, some people find it hard to deal with.  They can’t square the ‘new you’ with the healthy you that they used to know.  When that illness causes chronic pain it is extremely difficult for anyone who doesn’t know the unbearable torture of living with chronic pain to really empathize with what you are going through.  When that illness is a gynecological disease like endometriosis, it is not easy to explain and makes people uncomfortable.  Especially people who are not blessed with the wonderful reproductive system of ovaries and a uterus.

Lately, I have been making an effort to talk more about my condition.  The only way to raise awareness of the disease is to talk about it. Bizarrely, I found it easier to make speeches in a room full of strangers (all much older and wiser than me) than to simply talk about it with my friends.  It’s crazy when I think that I talk to my friends about all major aspects of my life but neglect the part that has really changed me the most.  The part that has a bearing on all the other parts.  Why is it that I’m so comfortable talking about my job, my studies, my love life, my dreams, my passions yet I couldn’t bring myself to talk about the thing that keeps me up at night, the thing I worry most about, the first thing I have to think of in every situation?

This week I was ambushed with an in-depth, no-stone-unturned conversation about my endometriosis.  I met up with Best Friend for the first time in weeks.  A lot has happened in both our lives, his with his PhD, mine with my surgery.  We swapped stories and caught up with each other over lunch.  It was great to chat and I was happy that our friendship was back on track. We decided to go for coffee and on the way, Best Friend asked if it was okay to ask me questions about what was wrong with me. He caught me slightly off-guard but I agreed.

He only found out about the endo after I took part in an awareness article back in March.  It was humiliating and I was completely embarrassed when he said he had read it. We hadn’t really discussed it since.

It was clear from our conversation that since then, or maybe just since my operation, he had been educating himself on what exactly endo is.  He led the conversation with an opening statement, one which I am sure he had practised beforehand.

‘I had no idea how serious it was. I mean, I didn’t know all that you went through every day, on top of everything else in your life. It must be so awful. And your best friend is a boy so you must’ve thought that you couldn’t even talk about it with me. But I want you to know that you can. I’m here and I really want to understand everything that you’re going through.’

He was so earnest and honesty was etched all over his face. He continued by asking me concise questions he had clearly been thinking about.  Questions about the medical aspects, the implications, the emotional affect it has on me.  Although it was not what I expected from our friendly catch-up, I figured I owed him the same level of honesty in return. I admitted how difficult things are for me sometimes, I confessed to worrying about ever finding someone who could cope with all the extra baggage I come with.  In an uncharacteristic move, he touched my arm and told me I needn’t worry, I was ‘stunning, a stunning girl’. That flummoxed me.

The issue of sex came up as he had read about all the symptoms and was asking me which ones I did and didn’t experience. We’ve casually talked about this kind of thing before but never in such a serious conversation.  I asked if he really wanted us to talk about it and he did. So, I told him about the other gynae problems I have, the constant infections and cysts and the mother of all abscesses I had earlier in the year.  To try and explain how bad these things can be, I brought up our weekend in Galway at which point he interrupted to point out that he never touched me. In utter bewilderment, I then stared at him while he said ‘I might have looked while we were in Galway but I never touched’.

In some way, it was a strange kind of relief to find out that I hadn’t imagined the weird tension between us in Galway.  But more than that, it was a relief that a friend, my Best Friend (a boy for that matter!), had gone to so much effort to try and understand my world.  I really think that he now gets me so much better than he did before.  He has a bit more empathy now and, hopefully, this brought us back to the close friendship we once had.  It felt like a giant hug of compassion.

How important it is for endo sisters to feel like someone has compassion and is trying to understand

How I accidentally became an activist

Published May 2, 2012 by crazyinpink

I wore my yellow dress (yellow is the chosen colour for endo awareness) and pink heels (my favourite). I looked around at about 40 people; doctors, MLAs, pharmaceutical reps, professionals, charities, I realised I was the youngest by far. But I ploughed on and gave my wee story. I was told to just be honest, so I was. I told them about being ignored for 5 years as a teenager, I told them that I’ve had to accept that my life won’t turnout the way I’d like it to, that I’ve come to terms with the fact that not everything is possible for me. I said that the most important thing is to raise awareness of invisible illnesses because with more knowledge comes more opportunity for help and for hope.

I think it went well. In the discussion time afterwards all kinds of people came up to me to say that they thought I was really brave to talk about my condition so honestly and thanked me. One politician told me I should go into politics because they need more women who are passionate. I had my photo taken for a health service magazine and they took my number to do a follow-up interview later in the week. The leader of one political party wanted to speak to me one-on-one and took me to the members lounge for a coffee where I told him about all the crap I’ve had to deal with. His jaw dropped more than once and offered to do anything he could to help out.

At class last night, which only 4 of us turned up for, the head of History (who is my Facebook friend) asked me about my day and was impressed with my campaigning. It hadn’t really dawned on me that I was campaigning but I guess that is what I’m doing. I just want to raise awareness of endo and chronic pain and if telling my story to a room of strangers helps do that, then that’s what I’ll do.

I received an email today from the organiser of yesterday’s event thanking me and saying I’m a ‘shining example’. There’s a summit on pain in two weeks, an all-day conference to build upon yesterday. I’ve been asked to attend and hopefully some good will come of it.  We need more awareness and acceptance. And apparently I’m now an activist for the cause.