What Having a Hysterectomy Taught Me About Crohn’s Disease #12 - Stop Telling People That You’re “Fine” When You’re Really "Phine" (Meaning That You're Not)

 I well remember the day that I stopped telling people that I’m “fine”. It was about 10 years ago, and I was at work in the lunch-room. I had my period and was in serious pain and was sitting with a super-hot wheat bag plastered to my abdomen, staring at my lunch which I couldn’t even begin to think about stomaching, and cursing that the two extra-strength Tylenol (paracetamol to you Brits) that I had taken had once again failed to do anything. I was on a waiting list to finally see a gyane to find out what the hell was causing the chronic pelvic pain and I did not have a good pain management regime.

On top of this, my father had the first of two heart attacks he would have within a 6 week period and he had a life-threatening reaction to the life-saving drugs he was given. I had gone back to university part time and was swamped under with course work. I was wearing too many hats in my volunteer life. My manager was being completely unsupportive, my two colleagues who were on my “team” continued to prove their uselessness quitting at the same time and dumping everything on me, and then the organisation changed my working pattern without consulting me. It was May, so my hay fever and asthma were flaring up, I was in serious pain and my mental health was slipping. Eight weeks later, I would tell my boss to take that job and shove it and buggered off to Nova Scotia with a friend for a few weeks to sort my head out.

“Hi, how’s it going?!”, a chirpy colleague says to me, entering the lunch room to warm up her uber-healthy lunch in the microwave. “Complete utter fucking shit”, was my response. The stunned silence and the look on her face said everything. I had broke two cardinal rules of Canadian social interaction. Not only had I broken the rules of being polite by not saying “fine”, I had also broken the rules by being bloody honest. Had I been living in England at the time, I would have also broken the rule of keeping a stiff upper lip. But the reality was that I wasn’t fine. I was anything but fine. And I hit the point where I couldn’t tell people that I was “fine” any more when I clearly was not. 

 A few days later, I was at a meeting with several other “Endo women” at The Endometriosis Network of Toronto (aka, TENT) when I shared this story. We had a few giggles over my breaking of unspoken social conventions and then the room went a bit quiet. Then one of the women very quietly said, “I wish I could just say that to people”. “Why don’t you?”, was the response from the group leader. And we all spent the rest of the evening discussing those unwritten social conventions and why we were afraid to just tell people the truth. We all came to the conclusion that we didn’t tell the truth because we didn’t think people wanted to hear it. They were just asking how we were because they wanted to follow the social conventions. And we all decided that night that we weren’t going to go with conventions anymore and were just going to give honest answers from now on.

This story has been on the brain this week for a few reasons. One is that it is almost ten years to the day when this happened. Another is that I am at another point in my life where I am very much not “fine”. The other is that it is Canadian Mental Health Week http://www.cmha.ca/news/its-mental-health-week-may-5-11-2014-tell-us-how-you-really-feel/#.U2pxc6LN4TA, and interestingly, "Fine or Phine?" is the crux of their campaign this year.

In a lot of ways, I’m a lot better than I was. Physically, things are much better. My kidney and liver function are back to normal, and according to the last batch of blood work I saw, I’m almost in “technical remission” from the Crohn’s. My back is much better, and I am in the “rehabilitation phase”. But anyone who has been through rehab (of any sort) will tell you that is the really tough part. And believe me, it’s tough.

And the horrible reality is that despite being off the steroids for 6 weeks now, my mental health hasn’t even begun to recover. So no, I’m not “fine”. In fact my response to the question “how are you?” as of late has either been “shattered”, because that’s true, or “utter shit”, because that’s also true. And that completely breaks British social conventions on several levels.

But you know what? I don’t care about breaking social conventions. I can’t pretend things are “fine” when this has been one of the worst 12 month periods of my entire life. I’m down the rabbit hole and can’t even see the way out, never mind trying to find a way to climb my way out.

At some point, we have to admit that our social conventions don’t help. It may make someone else feel better if I tell them that I’m “fine” or that “everything is much better”, but it’s not the truth. The reality is that having chronic illness sucks donkey balls and I wouldn’t wish what I’ve been through on anyone. And that’s the truth. And if you can’t handle the truth, then don’t ask.