I confess...I'm not doing much better. Ironically, I have another specialist scheduled for today. I've actually been managing to sleep decently with the help of a the medicine that is supposed to help one deal with the pain, but I still need Ambien or I'm up so kept the Sleep Doc appt.
Anyway, this week's topic for Endo Awareness Month is the mental impact. For me, this is all about how chronic pain impacts me (so a LOT of this applies to chronic back pain too). It is draining. When you are in pain constantly, you are also tired constantly. A deep bone tired that isn't about needing sleep but rather about just being out of energy. I can put on my "people face" when I need to but that takes a LOT from me. I need a lot of downtime. I do love going out to dinner on the weekends but if I've had to put on the people face a lot then I often opt for more quiet nights at home. The pain itself stops me in my tracks and makes me yearn for bed and the weight of the constant pain just adds to that.
The added wrinkle on the mental side comes from the fact that endo is an invisible illness. I remember being in pain on the train once and practically jumping at an open seat only to hear two women deride me, suggesting they were tired and needed it more. I'd sometimes make a phone call and mention that I was in pain in the hopes someone would offer me a seat (I was too shy to ask). I've had people toss out the phrase "well, at least you have your health" and wanted to reach in and squeeze and twist everything below their belly-button and then ask if they wanted to repeat the comment. I've also had people who doubt and question my pain since I look like a pretty healthy person from the outside. I want to scream from the rooftops that you can look healthy and still be crying inside from pain.
A final issue on the mental side is guilt. I have talked before about "ribbon envy"...the jealousy that other diseases get much more attention even though endo impacts so many lives. I get a bit mad when I see so many pink ribbon fundraisers. And then I feel guilty. Of course, I want breast cancer cured. And I know my illness is not a fatal one. I feel guilty about the jealousy, but it is honest. I was once at a winery that sold shirts with a donation to endo and I nearly cried happy tears (they had NO smalls or mediums so I couldn't get one, they weren't sleep-shirt friendly or I'd have bought an XL).
3 comments:
I don't think most people understand how exhausting chronic pain actually is. And I feel you on the invisible illness issue. When I first got sick I was actively belligerent about the possibility that people might judge me for taking the elevator down one floor because I *looked* fine.
"I can put on my "people face" when I need to but that takes a LOT from me. I need a lot of downtime"
I can relate to this. I don't live with the level of pain that you do but I can relate.
Great post.
I have to give you great admiration for voicing your "ribbon envy". I have felt that way for a while now, but as one of my husband's closest friends is struggling with liver cancer at 30 years old, I always immediatley feel guilty for thinking those thougths. But you are completely right, just because our disease is not fatal does not mean that our quality of life has been stripped down to bare bones. What is a life that is poor in quality, even if our disease won't kill us?
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