Monday, March 11, 2013

Endo Month Week 2 - The Mental Impact

This week's topic for the Blogging for Endometriosis Awareness Campaign is the mental impact that endo has on your life.  Again, I do want to provide a link to my post from last year, although I won't promise that this won't hit some of the same territory. 

As I've pondered this topic (I still push myself to do daily walks and I've "written" countless blog posts during that time, most of which never make it to the blog), I've considered how to distinguish between the mental impact of chronic pain and endo.  I've also considered whether a distinction is possible for me and whether or not it is productive.  I've decided to start with a broad pondering of the mental impact of chronic pain followed by some more specific thoughts on endometriosis.  I can't promise they won't fact, I can pretty well promise that they will.

The truth is, endo has always been primarily about pain for me.  And the mental impact of chronic pain is enormous.  The following list is FAR from comprehensive, but provides a glimpse into the impact that chronic pain has had on my mind and my psyche:
  • Chronic pain is EXHAUSTING.  I sleep a lot, because of the pain medicines, because my sleep is often interrupted by pain, and because the pain simply wears me out.  This is true even in my current "semi bed-ridden life."  It was also true before the back issues, when endo pain would flare at least a couple times a week even with the hormonal treatments (i.e. continuous birth control).  I learned how to "put on my game face" and get through work and other obligations, but it was exhausting.  By Friday night, I wasn't good for much beyond pizza, wine, and a DVD....which had its own impact on my relationships. 
  • Chronic pain is also MENTALLY EXHAUSTING.  The pain pushes everything else out of my head.  I can't concentrate.  Some days, I've been pretty well tongue-tied by pain, especially on the phone (talking on the phone has always required more effort/energy for me).  Struggling to find my words is incredibly frustrating for me.  At it's worst, the pain has been so mentally exhausting that I just end up staring at the ceiling for hours on end....even the simplest of television shows requires more than I have.
  • Chronic pain is EMBARRASSING.  I talk about pain.  Probably too much.  Which seems to be in contradiction with this comment.  I talk about it because I need support, because it explains a lot about my behavior (note: explanations are NOT excuses, a topic I've rambled about before), and because I hope to one day make at least one pain sufferer feel less alone.  Still, it is embarrassing to move like an 80 year old when you are in your 30s and to be a prisoner of your body.
  • Chronic pain makes for a COMPLICATED BODY/SELF RELATIONSHIP.  I didn't need this to be complicated anymore, having struggled with body image issues (along with eating and exercise issues).  Even putting those issues aside, it is hard to feel truly "at home" in one's body when that body is the source of chronic pain.  I previously rambled along a similar line using the term emBODYment.
  • Chronic pain can lead to GUILT.  Pain Shrink says he's spent countless hours counselling pain patients on guilt.  This often includes feeling guilty complaining about or even just being impacted by pain when other people face "more serious" ailments (ex. feeling pain while a relative battles cancer). 
  • Chronic pain leads to DOUBT.  Most days, the vast majority in fact, I know my pain is VERY real and that it is indeed often crippling.  Most days, the vast majority in fact, I know I use pain medicine responsibly and as intended.  But doubt is contagious and seeing and hearing it so often from people who cannot see behind the "you look healthy" exterior, wears on you and sometimes you feel it too. 
  • Chronic pain STEALS.  It steals my mind.  It steals my relationships when I can't nurture them.  It steals my days when I can't get out of bed.  It steals my joy of reading when I can't focus well enough to get through even a page.  It steals my hope, when it feels like it has been so bad for so long that I can't imagine anything different and stall waking-up because I fear (sometimes "know" is more accurate) the day will only hold more pain.
There are some mental impacts that, for me, are more specific to endometriosis (although they could apply to other diseases of the female body)....
  • Endo complicates one's relationship with WOMANHOOD.  This ties back to my comment about pain complicating the relationship with one's body.  I've never felt supremely tied to womanhood, a trait I admire in women who are at home with their bodies in a certain way.  Endo makes this even tougher -- it is a disease of the female body.  It is hard to feel in touch with womanhood while cursing the existence of uterine tissue and hormonal flows (and, per a gyn, you do still have fluctuations even on CBCPs).
    • Note: Another blogger made an interesting and important point that I want to add (please respect that I felt this important enough to add but that I do not want to turn this post into a debate about gender and sexuality...let's talk about it sometime, but not now), we talk about endo as a women's disease but saying it is a disease of the female body is more respectful of transpeople.  While I am not correcting my language to show this, I do note that it must be horrific to identify as male and have a disease of the female body.
  • Endo means EXPLAINING, a process that adds to the physical exhaustion of pain and illness.  There are still many people who've never heard the word or who just don't know what it means.  No, it is not "just bad cramps"...I don't question that some women have very painful cramps (though I bet some have undiagnosed endo)...but calling endo "bad cramps" ignores the severity of the pain and the other issues that arise with endo.  Yes, it is a real illness.  Yes, it can be debilitating and disabling (it isn't constantly disabling for me, but at times it has been debilitating).  Yes, it can cause infertility, and for many that is the most significant manifestation, but not every endo patient will have fertility issues (it depends on where the tissue growths are located). 
  • Endo means living in the world of INVISIBLE ILLNESSES.  It means getting all the "but you don't look sick" comments.  It means no one offering a helping hand at the grocery store.  In my train commuting days, it meant sometimes being in horrific pain but, with no visible disability, there was no reason why anyone would offer me a seat.  I may not have needed it in the same way as someone with a more physical disability (ex. someone using a walker), but somedays it was VERY hard to stay upright and steady when it feels like there's a knife in your lower abdomen.  Asking is hard, even though most people are kind, there's a fear of facing the doubters.  I try to remember my own experience with invisible illness when someone who "looks fine" steps out of a car in a handicapped spot. 
  • Endo also means dealing with other symptoms, like HEAVY FLOW (and, as noted above, infertility....which isn't a struggle I've faced so I can't discuss it firsthand, but I know from hearing other women's stories that infertility has a very significant mental impact).  I had very little mental stamina after the first few days of my period because I was so tired, afraid to sleep more than two hours in a row without changing my protection.  This also meant fearing long trips and constantly needing to keep an eye out so I'd know where the restroom was at all times.  The pill, even taken traditionally with the placebo week once a month, helped this a lot. 
There's more.  And I'll think of more as soon as I hit "publish" but editing can be never-ending and, unless I feel something is too big to leave off, I'll just trust that "there's more" is good enough.  Actually, THAT is a big one...a major mental lesson of both endo and chronic pain in general....sometimes you need to accept "good enough" because some days that's your very best.


Lib said...

I think you pretty much just summed up everything! I completely identify with the experience of people not realising that you might need a seat on public transport - I've almost vomited/passed out because of the pain on public transport before but people just can't tell! And the doubt as well... so much freaking doubt. No wonder my self esteem is so ridiculously low. I spend half the time wondering if I'm just making a big deal out of nothing when it really is something!

Diane said...

That was a great post and you mentioned a few things I planned on talking about. One being something I mentioned to my mom on our evening walk tonight (that I forced myself to go on after being in bed all day)...and that is the guilt that comes from seeing people (or knowing someone) battle cancer who is still living life and claiming "they feel great" while battling it and going thru treatment. That's when doubt creeps in like "how am I this bad, yet they are terminal and still keeping going?"

So nice to hear others thoughts that I am not alone!

Issys said...

So right! This is our never-ending story.

Diane, I am both: Endo-sister and Kidney Cancer survivor. And for ME, the worst has been the Endometriosis. Don't feel guilty. We all experience things in different ways. And contrary to cancer, Endometriosis has no cure.

Fight on, Endo-sisters!

Jamee @ A New Kind of Normal said...

This list is so true! Thank goodness there are people out there that can truly understand and thank goodness for the magic of cyberspace and helping me find such a wonderful network of fellow warriors!