What It Means To Be Chronically Ill

When I first heard the term "chronic illness" in connection with endometriosis, I thought, "Surely that can’t be right? I’m not chronically ill, because I don’t suffer from endometriosis all the time." But being chronically ill doesn’t mean feeling ill all the time.

Endometriosis may not impact you every day

When I think of chronically ill, my mind conjures up the image of a bed-bound person who is unable to lead a normal life. I think that is the same for most people. The word "chronic" suggests that the chronically ill person is always suffering, never able to be free from pain. Those are the people who seem surprised that people with a chronic illness can hold down a job, go to parties, enjoy life.

The first definition of chronic in the dictionary is “continuing or occurring again and again for a long time”. Our minds often latch on to the first meaning—continuing. We think that people with chronic illnesses are continually suffering. It is this misconception that makes people suspicious when endometriosis sufferers have a good day (or week or month). There is this belief that if you suffer from a chronic illness, you’re always sick.

But with endometriosis, it is usually the second part that is true. It’s an illness that occurs again and again. We may have some respite, some good days, but the endometriosis will always come back to hurt us. There’s nothing we can do but wait for it. We can seem fine for a while, but endometriosis never completely goes away.

Endometriosis is incurable

And therein lies the nub: endometriosis is incurable. This is the part that my family — and I’m sure many people with them — struggles with a lot. My husband, in particular, seems unable to grasp this. Every time I have a surgery, he thinks that this is it, I’m cured. But by definition, a chronic illness is incurable. It’s treatable, and we can live with it, but there is no cure. It will always be part of me.

I had a hysterectomy a few years ago. I chose this invasive surgery as a last ditched effort to get the maximum relief from endometriosis for the maximum amount of time. I had an endometriosis specialist who performed the surgery and he excised the endometriosis. I have been pain-free ever since. It’s easy for me to believe that this is now it. I’m cured. And I cling to the hope that the surgeon excised every endometriosis cell and it will never come back, but there is no guarantee. It’s like living with a time bomb. I don’t know whether the endometriosis may come back in a few years.

It’s not all doom and gloom though. Living with endometriosis can be very difficult, but there are treatments out there that can help. It’s, sadly, not easy to access those treatments, and more difficult still to find the correct treatment, but it can be treated. We don’t have to be defined by our illness.