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.