“Well, it’s not cancer.”
I’m lying down on a hospital bed following my second operation, my mind still slightly groggy after the general anaesthetic, the body only just starting to register the pain that the morphine has blocked so efficiently until now.
I’m getting snippets of the conversation that is taking place over my head.
“For the hospital, this is only a ‘small’ operation. We do cancer operations and those can last for hours and be extremely complex.”
I can’t believe my ears. My heart sinks. If my arms could flop, they would.
I do understand that cancer sufferers get the worse deal. I really do. I can tell the difference between my operations, which both lasted just over an hour, and an eighteen-hour operation for cancer that involves removing multiple organs, followed by months of brutal chemo- and radio-therapies.
However, I also think it’s slightly unfair to compare every disease in the world with cancer. Since when has cancer become the threshold for ‘illness’ and since when does it have exclusivity for empathy?
I know that it’s very easy for healthy people to convince themselves how easy and great my life is, but I welcome them to share my experiences before passing judgement.
I’ve been in constant pain for nearly a year; I’m unable to get on with my life; I’ve been off sick for three months; I’ve experienced indescribable exhaustion, with a heavy lid of depression pressing my physical and spiritual self all the way down to the point where I couldn’t imagine a different future, a future where I have energy and a future where there’s no pain; I’ve experienced bladder and bowel problems; I worry because I still don’t know how the disease will affect my fertility.
But, heigh-ho, happy days, because at least it’s not cancer. What am I complaining about?
Endometriosis can be a very serious and debilitating condition and although not life threatening in the same way that cancer can be, it often leaves its victims feeling confused, depressed and isolated.
I’m increasingly finding out that it is a very misunderstood condition.
Most people I know haven’t even heard of endometriosis. For many men, anything that is to do with “women’s bits” causes a small panic and they find it hard to talk about it. As far as women are concerned, many, quite surprisingly, tend not to be sympathetic because they share part of the experience, they have periods too, and their periods are frequently somewhat painful. Because of that they often struggle to imagine how much more intense and overwhelming the experience of pain for an endometriosis sufferer is, and how it also affects their mood, or how exhausted it leaves them.
Endometriosis does carry with it an increased risk of cancer, and the blood tests of women diagnosed with endometriosis resemble those of cancer sufferers. The word was mentioned during the initial consultation with my gynaecologist, but the test of the removed tissue proved that my cysts were of purely endometrial nature, thank god.
However, this lack of awareness of what the disease is and how it affects the sufferers left me exposed to many upsetting comments.
“Well, I spoke about you with my friend who had a cyst removed and she was back at work the very next day after her procedure. And you’re still not recovered after a month? You must be MAKING IT UP.”
Comments such as these don’t help. I don’t expect sympathy, I don’t expect understanding. All that anybody can do is support me through whatever I’m going through. Or simply leave me alone. I’m not that keen on sitting at home and missing all the Christmas parties for the third year in a row either.
Another way of belittling my condition is through hidden ‘jealous’ comments: “I wish I could sleep during the day like you do.”
“It’s because I had an operation five days ago,” I try to resist the urge to scream at them and cry the frustration off when alone.
Some people have even quite openly described me as LAZY. Surely, painful periods are not that bad (women get periods, get over it), and the operation surely wasn’t serious, (it’s not cancer, remember?), and I should be up on my feet by now. What do I mean by ‘tired’ – “the rest of us have to work and we don’t have the luxury of sitting about on our bottoms for days on end.”
Exhaustion that I have suffered during the past three months is impossible to describe. But it’s not laziness. And comments like these are hurtful and unnecessary during the period of my life when I’m already feeling down and when it takes all the inner strength I have to simply get me through the day.
It might not be cancer, but it’s still a serious and life-changing disease which carries the threat of infertility, pain, and repeated surgical procedures.
I’m thankful for those of my family and friends, who have taken the time to read up on the disease and are doing such an absolutely grand job at supporting me through it.
Let’s hope that organisations such as Endometriosis-uk do their bit to increase the awareness of the disease, so that we, the sufferers, can get on with getting better and our lives, in whatever way we can, without this undue prejudice.