The realities of chronic illness

I have endometriosis. It is a chronic, mostly invisible, illness.

This is permanent. There is no cure. There’s nothing I can do to be “better”. It’s never going to go away.

And it’s exhausting. It’s debilitating. And it’s fucking frustrating.

We were going to go to the beach today. Except that I woke up in flare up hell so we’ve had to cancel/postpone.


The worst part of this is that I knew it was coming yesterday but I pretended it wasn’t because I believed that I could control my body through sheer force of will. Guess what? I can’t.


Fortunately we hadn’t told the kids the plan, so they AREN’T disappointed but I am. I’m just devastated.

This is actually the very first time I’ve had to cancel big plans for the kids due to pain (which is pretty bloody good I guess) and it’s had me in floods of tears today.

I’m so so SICK of being sick.

I’ve done everything I could, I’ve opted for surgery that was no goddamn cake walk, and one that has left me unable to have more children of my own should I want them.


Don’t mistake me, I’m grateful to have my babies, but the choice was denied to me. And even now, when I am at peace with the decision, sometimes that pisses me off.


And what is left to me? Nothing.  There’s nothing that anyone can feasibly offer me, because I’ve done the two things that non specialist medicals claim should cure it:

1. Have a baby

Welp, let’s unpack and examine that one further shall we? My condition was only discovered after #1 Son was born.  So, guess what?

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

I’m going to say that one more time for the people at the back there in the ‘Medical Community’

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

Or, if it somehow improved it in any noticeable way, I bloody dread to think how utterly, utterly screwed up my insides were before I conceived him.

But then along came TT, and my surgeon here who performed my hysterectomy? Isn’t even remotely surprised that I’m in flare-up 5 (well it was 4 when I saw him last month). Because, and I quote,

I saw your insides. They are a complete mess.

And that was the most recent examination of them – nobody else had actually seen them post-TT arrival.

So before I go into the prescribed treatment options, let us discuss the other ‘cure’ that the so-called medical community loves to throw out there.

2. A Hysterectomy

Please excuse me while I die of hysterical laughter.

Because, you see, considering that a very considerable sub-sect of the medical profession considers this procedure to be the Holy Grail for us Endo Warriors, they make it practically impossible for us to achieve it.

First, there’s the age-old

What if you want more children

Well now Doctor Smart Ass, if you have looked at my goddamn charts you will have seen that the two I do have are literal unexplained medical miracles.

I have replaced myself and my husband, so I’ve fulfilled any kind of biological imperative that there is in the assumed social contract.

Three, if I ever seriously do take that particular blow to the head, then hell there is always adoption.

Four, yes you know what, when I was younger I did want three children. I’m one of three. To me that was the “correct” number. But that was before. Before I learned how bloody difficult parenting truly is, and before I learned that my chances of having one child, let alone three were slim-to-none.

So I’ve heard various iterations of that particular stream of bullshit but that’s not the worst of it. Not by a long chalk. The worst one? The one that has had me incandescent with rage? The one that has had me questioning what century I’m living in?

But what if your husband wants more children?

Or:

What if your husband leaves you?

Followed by

Then what if you meet a new man and he wants children of his own?

Firstly what the fuck? What Handmaid’s Tale level of sexist, misogynistic bullshit is this?

Am I really, truly only worth the potential contents of my uterus? In 2018 (when I had the surgery)?

Secondly? If the hus-creature did leave me right now? Today? I would have much bigger problems than the potential for no children with any hypothetical new partner.

I would be being deported. So yeah, that was so far beyond my scope of worry it’s bloody laughable.

Also, my husband? Not a huge kid person. He married me knowing _I_ wanted kids, and so agreed to have two but he would have been perfectly happy being SINK/DINK so three? Nah. That wouldn’t have been on the table. Which is fine. Men get choices here too.

So I went ahead with the surgery.

Now let’s discuss that particular set of thorny problems.

I wanted a complete hysterectomy. Everything. Out.

My attitude:

Now, it took over a year of begging and pleading to be put on the blasted waiting list when we were in the U.K. having been informed it was six months for the surgery I wanted, they kept me hanging for almost an additional year, and my operation came through for a month after we emigrated.

Now I will never, ever, criticise the NHS. It’s an amazing system, the U.K. is lucky to have it but in some ways it very much lets people down.

Those of us with chronic conditions? Both physical and mental? Yeah we slip through the cracks.

I do comfort myself with the thought that me cancelling that surgery must have allowed some other equally desperate woman to have hers sooner than she had hoped.

So I came out here, met my awesome surgeon who pretty much agreed (after reading my stack of medical records) that I needed the surgery.

But even then I had to plead for the total. He wanted to leave my cervix in at least.

I did not wish to remain a high-risk candidate for cervical cancer. However once I pointed that out he agreed.


However every single time I go to see him he does ask if we left it in there – this does not fill me with confidence


So I did it. I documented it. I had 11 months of freedom.

Now it’s back. And getting worse. And I’m not sure what is left for me to do. He has some ideas, there’s some treatments upcoming – but I’ve got no spare organs left.

There’s nothing else he can cut out. I’m not ready for a colostomy bag – and anyway he’s an OBGYN not a Gastro Doctor so if there’s more in my guts it’s going to need more referrals and arguments with insurance companies


We just got the bill for my “sick visit” last month – insurance companies don’t pay for those here. They did negotiate a lower rate but it’s still $160+


And did I mention I’m tired?

Tired of being the ill one. Tired of being the strong one. Tired of having to lean on my (amazing) husband time and again. When does he get to be the tired one? Tired of scaring/upsetting/worrying my children. Tired of hearing poor TT saying

Mommy is poorly again

Tired of missing out with #1 Son because it costs too many spoons to sit in the fucking backyard let alone take him to the goddamn playground.

I’m sick of this being my life. I want it to be hyperbole. Not reality.

And I’m scared. Scared for my daughter. Scared for any potential granddaughters.

I’m not taken seriously, the cycle is going to continue. I just pray it skips my girl.

And so the end of Summer Camp

And, as we were leaving? This quote from #1 Son:

It’s going to be a whole year before I come back

Honestly? You could have knocked me down with a feather.

He’s grown so much. His progress report has him so much improved from Week 1 to Week 6 that I could just burst with pride.

His teacher was full of praise for him

#1 Son is a child with a lot of love to give

She also noted that Math is his strongest subject, but that he needs to continue with daily reading aloud practice to maintain fluency.

You can imagine his joy with that 🤣😂

I also got to go in to get him an hour early on Thursday to see what he had been doing, and to watch the children put on two plays.

He was in The Three Little Pigs and he played The Big Bad Wolf. And he did so, so well. He only got a little overexcited at the third “act” and did his bit over the narrator. But the other little pigs just rolled with it- so it was only the narrator herself I ended up feeling sorry for.

Then we were shown examples of their “Persuasive Writing”

And my son?

Where the other children had written statements and arguments about why they should be allowed a puppy? (Or at the very least a bunny?)

My little socialist is trying to persuade his teachers that they need a recess.

He was also the only kid in his class to receive a certificate for 100% attendance. Which I struggle to understand, but a. It’s a free programme and b. The sheer cost of summer vacations of any sort more than triples in August.

But it’s a programme run for kids with IEPs, so in my opinion it’s beneficial for them to attend the full 5 weeks (and change)

However I can see why it might not happen, and I’m pleased his perseverance was acknowledged.

And I very much hope all the teachers who have given up so much of their summer now have a very well-deserved break!!!!!