Early on in my pain journey I realized that I needed to speak about it. I joined a Facebook support group and was blown away by the amount of women also experiencing the pain and struggles I was going through. After my Hysterectomy failed to do what we had hoped it would I developed These Next 6 Months as a means to air my frustrations. To vent my fears as well as my feelings on things that were happening in my life.
Looking back it was a little passive aggressive, which isn’t usually my style. I was in the midst of losing friendships I had had for over 15 years and feeling incredibly misunderstood by my husband, and my co-workers (who were like family) as well as my friends. I vented about doctors who brushed me off, procedures that didn’t work, friends who felt I wasn’t really hurting. No one was safe.
I was safe, because I was sure to never say too much, to never reveal too much of what was really, really going on inside me. Both physically and emotionally. Insecure is probably the best way to describe it. There are times I am feeling so incredibly lost and isolated and I want to scream and cry and beg someone to make it better. But that is hard to put on paper, and even harder to click that “publish” button once it’s written. More often than not those posts never see the blog page of These Next 6 Months. They get saved as drafts or deleted all together. I’ve just not ever been able to bring myself to share those extremely intimate feelings and thoughts with anyone.
I’m a crier. I cry about everything. I cry when I am happy, when I am angry or frustrated, when I am proud of my kids, you name it; it brings tears and I don’t care who sees them. Not this though. Tears for this don’t often make their way out into the open. If I need to cry about this I honestly lock myself in the master bathroom, sit on the toilet (lid down obviously…c’mon people) bury my face in my hands and cry. I try so very hard to be silent so that no one will hear me and when I’m done I fix my makeup and walk back downstairs and no one has a clue. No one.
Talk about wearing a mask huh?
The truth is I am always afraid of being that person that whines too much, who never stops talking about their medical stuff or who brings the vibe of the room down because they’re whining about their pain. I don’t want my pain to be what people think of when they think of me and yet I never want them to forget. It’s not that I want the attention or people doting on me (I actually hate that. Don’t do that. Please.) It’s just that I can’t ever forget and it would be nice to know that I am not the only person in the room who knows I am hurting at that very moment.
For a long while I tried my best to keep my Spoonie Life and my “real life” separate. I rarely wrote about my pain on my Facebook page, but kept it safely tucked away on Twitter and the PCS Support group on Facebook. I’ve been the one who was so fed up with the “my life sucks” posts in my feeds that I unfollowed people on Facebook and I was terrified to be that person. The more I tried to hide that part of my life away the more isolated I felt. My husband was on lock down when it came to telling people anything about my condition so people rarely ever knew why we didn’t show up at family gatherings or what he needed time off work for.
I just couldn’t do it. It was too private, too personal, too mine to share with anyone who might not believe me 100%. I probably don’t have to tell you, but I wasn’t doing myself any favors. People thought I didn’t like them, that I was singling them out to ignore or part ways with. Honestly, I looked like a giant bitch.
So I started opening up here and there about things to people around me, and started to share a little more about my condition on Facebook. My social media worlds started to merge together a little more and my reader count for These Next 6 Months started to grow. This turned out to be a little bit of a blessing and a curse because the people that were following me now weren’t just people from support groups, but my friends and family and extensions of my friends and family.
I had no idea how far my reach went until two weekends ago when my husband’s co-worker sat down next to me at a formal function and started questioning me about my pain and discussing my blog.
I almost died.
I was both amazed that I was face to face with someone who wasn’t obligated to know my story, but wanted to and also really pissed off because my pain wasn’t what I wanted to talk about at a table full of people I didn’t know. I sort of just stared at her and stammered out something generic before turning to my husband to keep from crying. It wasn’t my finest moment.
Before and since this awkward interaction there have been a few times that people have posted chronic pain memes to my wall or messaged me stories that made them think of me and every time my knee jerk response is “You saw an article/meme/picture/poem about someone suffering and immediately thought of me? Awesome.” (ß Insert sarcasm here) But I’m starting to come around to the idea that it isn’t meant to make me feel badly. It’s a gesture saying “Hey, I know you’re living with something that sucks, this is how I feel like I can support you.” It’s exactly what I asked for; to not be the only person in the room who knows I am hurting at that exact moment.
The reality of this situation is that I am the only person who will every truly know what this is like. At the end of the day I am the only person headed into that Operating Room, the recovery is all mine as well. There isn’t a way for anyone else to take my meds or do my physical therapy or shoulder my pain for me. There just isn’t. This pain is mine and that permanently puts me in a bubble all my own. It isolates me from everyone else just enough that I will probably never feel fully understood and that’s tough to swallow but I am working on it.
The best thing I can do is own it. All of it. And share it with as many people as will listen. Not because I want to kill the vibe in the room, but because the people that are sending me articles and posting on my wall love me and they are doing everything they can to show me that love.
I still don’t want people to associate my name with suffering and pain, but I do want them to think of me and think “Damn, that girl is one hell of a warrior.”