10 Things Your Friend With Endometriosis Wants You to Know 💛🎗🌻

Hi friends.  I know you're probably getting sick of these, but I'm back today with another endometriosis post.  When I decided to "go public" with my diagnosis, I started to write and a few very distinct blog posts started forming.  I needed to write posts about my diagnosis, my symptoms, my cyst and my flare-ups.  But after I went public with it... something else started to take shape.  And that's come together in this post.

I would like to preface the rest of this post by saying that I can't speak for everyone who has been diagnosed with endometriosis.  But I needed to get this out.  I've seen too much pain and hurting from girls in my endometriosis support group... and I can feel them crying out for someone to listen and try to understand where we're coming from.

I have also noticed myself having a lot of big feelings when I've had interactions with people over the past few weeks.  This blog post started out as a few quick tips... maybe five.  But through each interaction, it kind of morphed into it's own thing.  And since writing is where I seem to shine, I thought I would write these down as a reference.  I'm not even sure if anyone who needs to read them will.  But I would love for everyone I know (who loves me and wants the best for me) to read them... because it feels like I'm baring my soul a bit here.  Also, unlike my other Top Ten posts, I didn't number these because I didn't want to rate them.  They're all important.  So I guess let's do this... 

10 Things Your Friend With Endometriosis Wants You to Know

Validate My Pain, My Feelings and My Experience

First and foremost, please simply believe me.  After years of medical gaslighting, please believe what I'm telling you.  I'm not doing this for attention.  Please believe that my pain is real and that my experience with this disease is real.  It's not "just cramps" during my period.  The pain I have experienced is at times completely debilitating, at the very least it's constant aching.  In fact, I wrote a whole separate post just about my symptoms.  So if you haven't read that yet, I encourage you to pop over there before continuing here.

Do Your Research

Please do your own research and educate yourself about endometriosis.  To be frank, I'm already exhausted all of the time and I just don't have the spoons.  Plus, all it takes is a quick Google search and you'll realize how awful and debilitating endo can be.

Don't Try to Fix or Diagnose Me

I don't want you to try and fix me.  I don't want you to do tons of research to try to help the situation.  I just want you to be informed about what I'm dealing with, but I don't expect anyone to come up with any answers.  Plus, only I know the true nature of my disease and how it's affecting me and my life.  And respectfully, you aren't my doctor so I haven't told you everything.  There are quite literally only a handful of other people who know the full story... and that's my three doctors, Eliot and my Mom.

Please Don't Tell Me to Reach Out To You Unless You Really Mean It

Endometriosis sucks.  So if you can't be a reliable sounding board, it's better to just tell me right upfront.  I'm having a very hard time trusting people with this... because I can already feel people trying to keep their distance from me.  I know that I'm probably not much fun right now.  I hurt most of the time and I'm a total downer sometimes.  Please don't allow me to confide in you if you aren't prepared for it.  Because you pulling away after I've shared this with you makes me feel that much more upset and lonely.

Please Check In... 

Even if you aren't equipped to be a sounding board on the bad days, please take a minute to check in on me periodically.  I wish that I'd get more random texts from people saying hi or simply that they're thinking of me.  This disease is very lonely and it feels like no one wants anything to do with me anymore.

But Don't Necessarily Expect a Response

If you do reach out, please don't think I've ghosted you... even if I have.  I can promise you that it's not intentional.  And I'm not mad at you.  I'm just terrible at getting back to people right now.  I constantly feel like I'm a terrible friend, cousin, etc. because I take forever to message people back.  The reality is that I'm just exhausted all the time so I really have to prioritize what needs to get done before I do anything else.

Don't Take Me Cancelling Plans Personally

As much as I could want to do whatever with you, I might not feel good that day and I might cancel last minute.  Recently, I've been cancelling things left and right.  Eliot and I roll with the punches and don't make any plans concrete.  It's nothing personal... the reality is that I'm sick and I have a lot of days when I'd rather lay in bed or on my couch.

Also Don't Take Me Not Making Any Plans Personally

This is my trick in order to not worry about cancelling on people-  I've just tried to not make plans to begin with.  The downside of this, is that people probably think that I'm avoiding them.  When the reality is that I don't want to disappoint you by canceling last minute.  It's easier just to avoid plans in general.  But that's not really how a former social butterfly thrives... and I'm having a very hard time adjusting to this loneliness.

Support My Self-Care 

Please encourage me to nap, relax, read a book, color, binge watch television/movies, etc.  Because if you know me, then you know that I don't like to slow down.  You also know that I judge way to much of my self-worth on how productive I've been.  And considering that I haven't been able to do much at all these past few months... I am feeling pretty badly about myself right now.  Please remind me that it's ok to rest and that it's ok to stay in bed (or on the couch) if I need to.  My self-care is critical.

There Isn't a Cure For Endometriosis 

Finally... this is the most important one.  If you only take one of these home in your mind, please for the love of all that is holy let it be this one.  Endometriosis is a life-long disease that there isn't a cure for.  Please do not make me feel like this is something that I have to "battle" or "conquer" in order to get better.  There is no winning with endometriosis.  There is no magical hump that you get over and suddenly you're cured.  There are no pills.  There is no magic diet.  My excision surgery will not "fix" me.  If you tell me to "just get pregnant" I will probably punch you.  And please don't ask me if I'm feeling better yet... because there is no "yet" with endometriosis.  This is now a part of me, and I'm just trying my best to learn to navigate it and all that it entails. 💛🎗🌻