A letter to my loved ones, from someone with endometriosis 

  
I have endometriosis (you can read about my search for a diagnosis here), a chronic disease where the lining of my uterus grows in other places of my body, causing internal bleeding, a build up of scar tissue, and cysts. I get severe pelvic pain which can flare up at any time. My endometriosis decreases the effectiveness of my immune system, and causes extreme fatigue. My normal flare ups last about two weeks, from the start of ovulation to the end of my period, then I usually have another week of exhaustion from being in pain. Did I mention there’s no cure? With that being said, let me explain a few things to the people in my life:

To my coworkers:

There will be days where I will not seem like myself, nine times out of ten when you ask me “What’s wrong?” I will not feel like explaining that I barely slept the night before because it felt like I was being stabbed with a flaming hot, dull knife on my right side; so I will say “I’m just tired”. If I do open up and tell you that I don’t seem like myself because I’m in so much pain, I’m not doing it for pity, and I don’t want to hear things like “have you tried taking Advil?” or “Yeah, I get cramps too”. The best thing you can do for me is to not really acknowledge that I’m down (I like to think I’m hiding it, so don’t burst my bubble!) and just tell me a funny story to take my mind off of it. Seriously, there are days where one more “What’s wrong?” will bring me to tears. 

To my friends and family:

It takes a lot to convince me to leave the comfort of my heating pad and rescue puppy cuddles; and if I am feeling up to being active, it takes even more convincing to get me away from using that energy to clean my house. So believe me when I say that abandoning these things to be social is a very good indicator that I love you very much. It was through the encouragement of most of you that I went out to seek a second opinion, so thank you for that. There might be times we hang out where I’m more quiet than others, but don’t take that as a bad mood, I’m just tired. If I do have to cancel plans to take care of myself, don’t call me flakey, I just need some recovery time. For those of you who I can hang out with when I’m not feeling well and can relax knowing that I don’t need to act a certain way, thank you for being so understanding. I know that it’s probably confusing if you’ve known me since before my endometriosis got really bad, I’m still the same person, I’m just easier to keep up with now! 

To my husband:

I know you didn’t marry me because I could clean the entire house every week, have dinner on the table every night, be up for an adventure at any time, and still have enough energy to stay up late with you. You don’t seem to mind that I’m no longer the constant, crazy ball of energy I was when we first met. These are things I miss about myself that I project on you. Thank you for being the most supportive person in my life, for picking up the house when I’m exhausted, for dealing with my indecisiveness when it comes to picking what to eat when nothing sounds good to me because my endometriosis makes me nauseous. And while we’re on the subject of food, thank you for supporting ever diet/lifestyle change I try, we’ve been vegan, paleo and everything in between! Another huge thanks for putting up with me the entire year I moped around because no one believed there was anything wrong with me; and for holding my hand through the anxiety of searching for a second opinion. I can’t imagine going through any of this without you.

To myself:

You need to stop comparing yourself to perfectly healthy people, and especially to who you were before the endometriosis got bad. Healthy you could clean your 700 square foot apartment in one afternoon so well that you could confidently eat off of every surface. But beating your chronically ill self up because you can’t clean your 2,000 square foot house that well in one afternoon makes absolutely no sense. The things you have accomplished so far in your young life rival many healthy people’s achievements, so stop calling yourself lazy because you need to come home and rest after working a ten hour shift. You need to start caring for yourself as diligently as you monitor your bank account. Do not make energy withdrawals until you’ve taken care of yourself enough to make some deposits, and never let your funds run out, or overdraft your ‘account’. Most importantly, never be ashamed of your story. Endometriosis does not make you a broken person. It is a challenge but it is not who you are. Do not be afraid to share your struggles or your journey, it may inspire or educate others. Above all, be kind to yourself. 

Love,

Dani

2 thoughts on “A letter to my loved ones, from someone with endometriosis 

  1. Thank you so much for posting this. Ive struggled with the disease for over 15 years now (I have stage 4) and my husband and I are now struggling with infertility. I have an amazing husband but he doesnt understand the magnitude of the pain and fatigue I feel on a daily bases. Thank you and I hope you have a wonderful and pain free holiday season!

    • Thank you Lisa for taking the time to comment, I know some times this disease can be very isolating when the people closest to use can never fully understand what we go through. That’s why it’s so important for us to connect with, and support our fellow EndoSisters! Happy Holidays!

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