The hardest concept to explain to people about endometriosis is the fact there’s a good possibility that I am not going to fully recover.
I have come to terms with this, in fact chronic pain management generally concedes that you will experience some pain going forward, and never be completely rid of it. However societal norms make the aspiration of “becoming well” the overriding goal of those around you.
This is because acute illness (illness that has a beginning and end) forms most of the understanding of an averages person’s understanding of illness.
Cruelly some can even relate to terminal illness better than chronic illness. There’s a arc to the illness that makes sense – that is finite.
As such as I hear many of the same platitudes I tend to hear time and time again from people. I want to talk to you very matter of factly about what I think about each of them.
You’re so young, you have nothing to worry about
As if somehow my age makes the burden of chronic illness easier. I am getting remarkably good at hiding how sick I am some days. It’s frankly insulting to think that someone else’s life is easy simply because of their age.
I have an incurable disease that will be with me (in some way) for the rest of my life. I’m willing to bet that I have more wisdom from my years alive than others give me credit for. I’ve had to dig deeper much earlier than most. All the roads that were open to them at my age are doors I have had to beat down, and I pay for every single one.
Go to the doctor they’ll fix you up
I genuinely miss the time when I could go to the doctor and get a definitive resolution to something. This isn’t a complaint about my doctor of course. I’m on a good and responsive road to treatment, but years of illness have taken their toll and I’ll never be the person I was without endometriosis.
My body has had to re-adjust to living with chronic illness. It’s become used to it. It can tolerate the pain and lack of energy to some degree. To the point that the pain that would have floored me two years ago has become a new sort of normal.
With that in mind what can a physician really do to dent something I have already become acclimatised to?
I can’t shrug off endometriosis anymore. I’ve had all the surgery I can have for now, I am on all the right medicine, what more is there to do? Realistically all I can do is turn to face it and get on with my life, find new ways to get on, to open those doors rather than painfully strike them.
Just wait until old age if you think this is bad
Yes I am sad to say someone has said this to me, and it did hurt. The very group of people I’d expect to understand chronic illness (the elderly) do occasionally find the extent of my illness hard to believe.
In many ways I already have aged. My body has failed me decades before it should have. I have the strain and burden of old age already lapping at my heels, urging caution every day instead of excitement.
I have to be careful about how much I carry, how far I walk. My muscles and limbs ache from the strain of holding my body to avoid pain. Some days sitting hurts, lying hurts, thinking hurts.
I have to live with none of the visual cues that tells someone that I am unwell. No wrinkled face to indicate I need a seat, no cane to indicate I am struggling. I get on with life invisibly.
A final thought
It’s rare that I would share these thoughts with people who have said these things to me, but I do think it’s important to vocalise these sentiments, to discuss them rather than let them gnaw away at my insides.
It all goes back to learning to forgive the fit people in your life. These thoughts have come from others because of presumption. Raise awareness of your illness and these presumptions about endometriosis will disappear.