Balancing Relationships with your Chronic Illness

Reevaluating Myself & Self-Editing Bull

The other day I was told about about someone’s friend who tried a new type of treatment and was  cured of endometriosis! This person meant well, of course. Yet, I wanted to throw my  computer off my desk or scream through my screen THERE IS NO CURE FOR ENDOMETRIOSIS! 

The lack of understanding about my disease is astonishing. With 176 million women worldwide suffering from this disease, how could more not be understood?

Heck, I did not know much about the disease myself until November and I had it for over ten years at that point. Now, I have undergone a surgery to correct two occult hernias I had no idea I had, a misshapen uterus, removal of a fibroid previously unknown, excision of multiple areas of endometrial tissue, and am now in pelvic floor therapy.

Prior to all of this, I had no idea what pelvic floor therapy was – let alone it existed at all. Now, it is my favorite thing to look forward to every other week. The pain is excruciating during the session and for most of the day afterwards, yet it makes me feel better the next day and the session itself is a stress relief – a moment to stop and focus on my recovery.

In that room, my therapist accepts that I have a disease that needs treatment. She acknowledges that I have real pain. She accepts my limitations but does not judge me for it. She treats me as a real person, talks to me as a friend (she would be an awesome friend, she’s the coolest!), and in the hour session, I feel like I do not have to hide myself for who I am – a woman in pain, an endowarrior.

I’ve been dealing with a lot over the last two or three weeks having to look at how I present myself in the public eye – reevaluating how others perceive me. My life has been, in someways, under a microscope. I have caused some of the spotlight by creating a website and sharing my inner thoughts on chronic pain, sharing statuses online, and so on. Nonetheless, some criticism is not always warranted. People are so quick to judge from afar without confronting each other in person. We make snap comments without thinking about the consequences – the future impact on relationships which have taken years to cultivate. Friendships can crumble so quickly with one click of the ‘enter’ button.

Now, I double check every word I write and/or type. I am almost paralyzed in my writing. My therapeutic outlet has all but been taken away from me because of one dumb, thoughtless post I made, albeit from a good place in my heart, but with poor word choice. I do not even know what to do anymore. Where do I go from here?

Do I stop writing? Will I be able to find joy in it again? Will I be able to write without thinking I am going to destroy another relationship? How do others have all of these “no holds bar” blogs? Do you just not worry what others say? How do you handle that?

My mental health is really struggling with all this crap and I want to get over it and just get back to my good writing shit and not this crap this is so scrubbed down and over analyzed that it sounds like crap.


2 Comment

  1. Hi Juliane, I read this and thought long and hard about what I could say to you. Firstly, I feel your frustration and the pain that you are going through on an emotional level. It is evident through your writing. I know that each of our experiences is different with Endometriosis so I will not pretend to understand the extent of your physical pain but I can empathize because I know what my experience is like.
    When I started blogging I really wanted to just hear from other people and learn form their experiences. I found though that the writing also became therapeutic for me at times. Since therapy is my wheelhouse I have other outlets, but still the intensity with which I write is far different from how I speak and the image I create for work and sometimes even home.
    It comes at a price though. I have had to weigh being able to express myself freely and openly with how people close to me will receive it. I too have lost some acquaintances.
    I have come to the conclusion that if anyone makes my blog about them when it is only about me and they choose to absent themselves from my life then so be it. That’s easier said than done.
    I looked at the benefit to me and found it far outweighed the benefit of their presence in my life. Friends of us spoonies/ endowarriors…….whatever you choose to call it cannot be thin skinned and must realize that this is our process not theirs; unless they walk in these shoes they will never understand and they should just let it be.
    I am sorry that you are hurting. However, I would say that if the blog is your therapeutic outlet then continue to use it. This is about your survival, your sanity, you taking care of you and managing an almost unmanageable situation the best way you know how.
    Do what helps you!
    True friends, people who love us will love us despite anything we say. Love forgives all and covers all.
    There’s so much more I could say on that but just take care of you.
    On another note, I am happy that you are enjoying the pelvic floor therapy; it doesn’t even exist here so I can’t try it. I think with Endo we do what we can, try what we can and continue fighting. I’ve just done pelvic surgery #7 and i carry on.
    Don’t give up!
    Keep fighting! Some battles are tougher than others but in this war victory is spelt perseverance. We keep getting up and we keep pushing.
    I pray your faith and I pray your strength.
    Remember you are not alone, there are sisters all across the world fighting with you….including me.

    1. Aw – thank you so much @mypcsLife! You have no idea how much your comment means to me. The community of sisters has helped me see the light at the end of the tunnel most days. It is a shame that some make it about themselves when it is a therapeutic outlet, but I have come to the realization that it makes me feel more human – so I have to keep going. I do not care if a million read, or zero – as long as it is helping me voice my struggles, achievements, etc.

      I’ve met so many amazing women, such as yourself, who have helped me realize I am not alone. For that, it is all worth it!

Leave a Reply