5 Things People Living With Endometriosis Want You To Know

If you were like me ten years ago and had never heard of endometriosis before, your first thoughts of the word might be that it looks like a bitch to spell. You would be right.  Coincidentally, it’s also a bitch to have. Endometriosis (or endo, as I will refer to it now purely out of laziness) is a chronic illness where tissue, similar to what lines the womb, decides to grow outside it and in other parts of the body. It affects over 10% of women and trans men, causes severe pelvic pain (as well as many, many other symptoms), can be found in reproductive organs as well as in places like the bowel and bladder (in fact, the only place it hasn’t been found in is the spleen) and can even, at times, cause infertility. So yeah, I would say an incredibly complicated name fits an incredibly complicated disease.

On average, it takes around seven to ten years to be diagnosed with endo. For me, it was closer to twelve. This can be due to a lack of menstrual health education, people normalizing their symptoms, or doctors normalizing the symptoms sufferers present. Either way, it’s a hell of a long time to wait. By the time people are finally diagnosed with the disease, it’s often received with an overwhelming feeling of relief for finally having an explanation for their symptoms. Although it can feel like closure to finally put a name to this pain, the people in our life may have a very different reaction to it. They might trivialize it, ignore it, pity you, or even worse, just not believe you. So, for the family and friends of any endo warrior out there, here are five things we wish you understood about this disease:

1. Sorry for canceling… again

I know we’ve had this day planned for months, I know how excited you are for it, I know how excited I am for it. I also know that I might wake up that day in pain and doing anything other than sleeping with a too hot heat-pack on my stomach will sound like torture. It’s like my body somehow knows that it’s meant to be doing something fun and out of spite, it decides to protest. So, I apologize in advance for canceling… again.  I know you are frustrated, and you have a right to be, but please imagine how frustrating it feels to never know if tomorrow will be a good or bad day, knowing that you might just have to let down the people in your life again.

2. Please don’t tell us that people have it worse or to look on the positive side

There isn’t one. Trust me, I’ve looked.

Although I do know that people have it worse than me, constantly reminding people of that, or trying to get them to see the ‘good’ in it, can invalidate their feelings and make them feel guilty for being upset. So, don’t tell me to be positive. And for the love of God, don’t tell me to do yoga.

3. We’re not complaining, or trying to get your pity, we just want to vent

When you’ve had a shit day, one thing that always helps is venting about it to your mates. It’s the same for people with chronic illnesses. So when I tell you about my day, don’t zone out because you think I’m complaining or look at me in pity, I don’t want that. I just want to have a bitch and then move on. I know I can sound like a broken record sometimes (trust me, it’s something I’m super paranoid of) but that’s just because endo takes a significant toll on my life and I want to be able to explain to you how it feels.

4. Just because we don’t look sick doesn’t mean we’re not

Would you prefer me to shout how I’m feeling at you all day, 24/7? Because I will do it and make sure that I gradually get more annoying each time if that’s what it takes for you to understand. Endo sufferers are often geniuses at looking fine on the outside all the while experiencing an awful cocktail of back pain, cramps, and fatigue on the inside. Please don’t assume that just because I’m wearing makeup and a cute outfit that I’m not sick anymore, it doesn’t work like that. Although I wish it did.

5. We appreciate you

There will be many people who will leave our lives because they refuse to understand what it means to live with a chronic illness, but the people who do stay, the people who read this, will at least try to. That’s what is important, that you try. As overwhelming as it can be to be diagnosed with endo, we often forget just how overwhelming it can be for our family and friends. They have to try and adjust to this new normal, all the while trying to figure out the best way to offer support and keep the relationship alive. So, to the people who stick around, just know that your love is invaluable to us and you are very, very much appreciated.