When I say I have endometriosis, I feel like I have to explain. Sometimes I'm cut off with an "I know what it is" or I'm met with strange, questioning looks.

Some people have never heard of it while many others think they know what it is. But when someone cuts me off and says they've heard of endometriosis, I'm doubtful that they know what it really is or what it means for my everyday life.

More than 10% of women have endometriosis. That's more than 5% of the population. Yet even those who have been diagnosed know very little about it, probably because doctors themselves don't. It's an ignored disease thanks to a history of patriarchy (that’s all I’ll say on the patriarchy for now).

No, endometriosis is not just painful periods once a month. It's a full body, full time inflammatory disease that can be life-sucking and completely debilitating.

There's a few things I wish everyone I met knew about endometriosis (and probably a few things I hope they don't know), because it means I will postpone plans five times before we get to them, I will take more sick days than any other colleague, and I won't always be able to make the family events. None because I am lazy or don't like you. Because I'm doing the best I can with the body I've got. And I can only dream that everyone I meet can understand that.

1. It's unpredictable.

I can be wonderful one week, then non-functional for a month. One hour I can be happily chatting over coffee, the next I can't keep my eyes open or put two coherent words together.

One of the hallmarks of endometriosis is irregular periods. BUT, it’s a whole lot more. The list of associated symptoms is seemingly endless, from nausea and vomiting to chest pain and difficulty breathing. It’s a disease that affects every part of the body.

Us friendos (“friend with endo”, a term coined by Jessica Murnane in her book Know Your Endo) also have what we call flares or flare ups. They’re flares or increases in symptoms or pain that can last hours, days or even months. For me, they’re difficult to predict and even more difficult to get out of.

I myself might also be a little unpredictable. Pregnant women aren't chided for their emotions and cravings or morning sickness. It's accepted sometimes pregnant women just cry. For no reason. Well, all those things are caused by hormones. And when my body doesn't know how to keep its own hormones regulated, those same things happen to me (without the end result of a child). I've cried over some crazy things, had panic attacks for no reason, and woken up just to throw up countless times.

2. You can't see it.

I don't look sick. I don’t have any mobility aids and I don’t sound like I’ve got a cold. What you don't see is the way I walk crouched over when I'm at home and in pain. As I pass you in the grocery store I look like another 20-something shopper filling up on easy prep meals, when what you don't see is how I'm putting most of my weight on the trolley just to keep walking and trying to manage a budget (and tastebuds, some freezer meals are ick) with my lethargy.

I may look perfectly healthy on the outside, but there is a very real disease spreading inside me causing debilitating pain.

3. It is real.

Maybe it sounds rather incredulous that I am still in pain after a whole month. Surely modern medicine has something for that! Pop some pills. Get on with your life.

Believe me, I've tried everything. I've even put myself in pain to try and get out of pain (ever heard of an acupressure mat? some people swear by them, but they're not nicknamed the bed of nails for no reason). The strongest pills doctors can prescribe don't touch my pain, they just make me loopy and nauseous or tired, ending with me being non-functional anyway.

Historically the disease fell under the all-encompassing diagnosis of ‘hysteria’, which persists even today with practically every endo sufferer having at least one doctor tell them the pain is in their head.

If even our doctors don’t believe us, how can we expect our family, friends and colleagues to?

But endo isn’t in our heads. There are actually physical lesions that grow inside, a cancer that steals life without causing death. These lesions can be cut out but no matter what, they grow back.

4. It's a full body inflammatory disease.

Endometriosis not just an underlying hormonal imbalance or pelvic inflammation. It's actually an inflammatory disease that some medical professionals suggest should instead be considered an auto-immune disease.

It results in the whole body being in a persistent state of inflammation. Think about when you have a cold or the flu. Your body is working extra hard and using it’s energy to heal itself, making you exhausted. We live like that all the time, with bodies working overtime simply to function, hence many friendos live with chronic fatigue.

5. Everyone's endometriosis is different.

I sometimes, probably selfishly, hate seeing celebrities or accomplished business women speaking out about living with endo. Don’t get me wrong, I LOVE that they're raising awareness, endo is such an overlooked disease, but I fear I will be compared to them. I imagine the next person I tell responding with "Oh, you have endo, what do you mean you can't work full time? You know Halsey has that too, and she can travel the world putting on concerts."

Endometriosis affects everyone differently. Some people can even go their whole lives without knowing they have it. The affect ranges from a-symptomatic to entirely debilitating. Plus, the symptoms dont always correlate with the amount of internal growths. Some people can have extensive internal growths with few symptoms while some people without a lot of growths can have severe symptoms. It’s like a box of chocolates, you never know what you’re gonna get.

6. It is chronic. There is no cure.

Yes, even though it's been months since we've talked, I'm still sick. That's what chronic means.

The normal reaction to getting sick is doing what you have to do to get better. You go to the doctor, you get some antibiotics, you eat differently. But for some conditions, there is no ‘better’. So please, stop expecting me to 'get better' soon.

Modern medicine knows next to nothing about endometriosis. We have the patriarchy and Freud's blanket hysteria diagnoses to thank for that, but it is what it is. There is no cure for endometriosis. Hysterectomy or pregnancy, though sometimes suggested, are not cures. There are options for slowing growths and managing the symptoms, but many of these have side effects just as bad as the illness itself.

"What are you doing about it?" is my most hated question, because I'm doing my best with what modern medicine knows, or rather what it doesn't know. Nobody likes being sick, and I may not be doing anything right now because I’ve already tried everything or because I’m too busy keeping myself alive one day at a time.

If you live with endometriosis or chronic illness, you probably already know all about these. If you wish that a few people in your life knew them too, be sure to share this post on your socials, or even text or email it to someone (and don't forget to pin it for later).