Friday afternoon, I was amazed and proud at how well the pain denial thing was working, until I realised it wasn’t just pain denial or “mind over matter”. I’d also taken medication to help me along. Regardless of that, the pain could have come through the meds, it could have been so much worse like it has been in months past.
So I hope it’s really my brain along with the medication effecting the lessened pain, rather than the pain just behaving itself for the most part.
I started the mindset that there must be real actual pain denial in effect. I did this for two reasons:
- I just started a new job and I can’t afford to be off sick again. I’ve already missed one day and one hour from this job because I caught a virus from someone there. I’ve been going to work hacking up green and yellow goo, getting dizzy, and I’ve had a constant sore throat. I shouldn’t have been going in but it’s clear they’re giving me the wary eye if I miss any more work than I already have. I feel that missing more work on account of endometriosis pain could jeopardise my continued employment.
- An acquaintance who means well keeps telling me to “think positive” thoughts – affirmations if you will – that the pain will simply not happen. Whenever I try to tell her how the pain works, she narrows her eyes and starts to tell me I’m not thinking positive. She’s not the first person in my life to tell me that. My folks still tell me that all the time, going back to when I was a kid in high school barfing from the pain. My Qigong practitioner, my homeopathy practitioner, my masseuse, various doctors over the years – they’ve all told me the same thing. “Think positive in an effort to overcome the pain”.
I’ve also had friends, neighbors, relatives, and coworkers over the years tell me to “think positive”.
These people all have the same thing in common – they all give me a look of disapproval when I reply that thinking positive is not enough to stop the pain.
It kinda reminds me of when I was in middle school, and I came home crying after having been picked on and beat on all day. This was almost a daily occurrence for me throughout my school years. I came home crying and my mother told me a bible story about turning the other cheek, and basically ignoring the abuse these people gave me, and eventually they’d give up.
Tearfully I exclaimed, “But ma! They follow me!”
I explained to her that I’d tried repeatedly to just ignore the taunting, but the kids would lay in wait and attack me, and it was relentless, it never stopped. They never tired of it.
Seriously, you need to understand this, people. Telling me to just “think positive” and/or ignore the pain is not enough to stop the pain, just like it was not enough for me to ignore the kids who hurt me.
You may be frustrated at this point, trying to refer back to the opening sentences of this journal post. This is the thing people are not willing to understand – that the pain lessens when it wants to lessen, and worsens when it wants to worsen, despite medication, despite dietary modification, despite prayer, despite thinking positive.
What I’ve started doing in recent months is that every time someone gives me unsolicited advice on how I should manage the endometriosis pain, I take their advice and closely monitor the effects, then record it on my Things I’ve tried to combat endo page. When something doesn’t work out, I have my notes to show you. Once I have my notes, I don’t want to hear your unsolicited advice repeated.
I consider pain denial and thinking positive to be closely related, because in my world view, people who “think positive” all the time are totally in denial of reality.
The last vivid memory I have of doing the pain denial tactic was back in November, 1989. I had just started a full time job, was going to school full time, was trying to make ends meet, and then my maternal grandpa died. I was stressed to the hilt and grief-stricken on top of it. I couldn’t take any time off to go help bury grandpa down in Kentucky. I made the choice to stay behind and continue to be responsible for my own future. Besides, I’d just seen him five months prior when we went down to Kentucky to visit, when grandpa was in the hospital.
The thing is, what if all that was happening to my body really was just being overtaxed, and so the pain just couldn’t come through because of too much other emotional trauma going on?
Or what if for those particular menstrual cycles, the pain just wasn’t that bad, just because? Because sometimes I do have much less painful periods. Rarely, but it’s happened.
What I’m saying is, what if there is no mind over matter going on? What if it’s all just playing out as it would play out on its own, without major life stress going on?
Then again, it’s been proven that a lot of stress and anxiety actually brings on the cramps. And there’s no better proof of that than my time working for that company that fired me for having endometriosis. The more they harrassed me, the sicker I got, until I was missing up to four days in one week each month from the pain. So with all the stress back in November, 1989, and then again this cycle, wouldn’t I be getting bad cramps instead of not getting cramps?
I just don’t know… I mean, to contemplate not being in control of my body at all, and the pain just being willy nilly – that scares me. If I could know that I positively did have a mind over matter effect on my body, and I mentally stopped the pain from making me bedridden – If I knew that to be a FACT, then I wouldn’t be so afraid of believing in mind over matter and perfecting this skill.
What prevents me from believing that “thinking positive” actually works and is not mere coincidence is that as a devout Christian at the tender age of 14, the first thing I tried when such horrific pain hit was to think positively about the situation. I prayed to God to take the pain from me, and I thought for sure I’d be absolved, as though a case of mistaken identity for punishment had happened. “It had to be a fluke, it had to just be a bad cycle. It couldn’t be like this all the time. I’ll be fine next time.”
My ma reinforced this behaviour and for months I worked at it. I begged God to stop the pain. I had renewed hope each month that the pain would not be so bad again. Not every month in the beginning was so bad, so one month I would feel like my prayers were answered, and the next month I’d be sobbing, wondering what happened, because I was suffering again. My ma began to tell me I was being tested for my strength of belief in God. She retold me the story about Abraham and his son Isaac. I carried on valiantly, trying to prove to God that I was a true believer.
All to no avail.
In the 23 years since I’ve been menstruating, I can probably count on one hand the amount of times out of those 276 months that I’ve been pain-free during my period.
Now here’s the thing…I DO think positively about my condition. I do it in form of thankfulness.
I am thankful that I have about 17-20 good days in every month before the pain hits, because many women with endometriosis have between zero and 16 good days in a month.
I am thankful that I am only bedridden between one and four days each month, because some women with endometriosis are bedridden for a week or more each month (my maternal grandma was).
I am thankful that I know almost exactly when the pain will hit me every month, because many women with endometriosis have pain all the time, or the pain comes on without warning at any time of the month, leaving them bedridden.
So if anyone thinks I’m just a pessimist, or that I don’t think positively enough, or that I lack faith, the only thing I really have to say to that is that I’m seriously insulted by their brainless comments. The people who tell me to “think positive” and who encourage pain denial are overlooking the very real fact that I have an autoimmune disease which behaves like a cancer, because endometriosis is characterised by rogue abnormal cell growth which sets off pain receptors in the places on which it grows. People overlook the fact that I was born with this illness – I did not bring it upon myself through poor diet, poor sexual relations, drinking alcohol or anything like that.
To tell a person with a congenital painful autoimmune disease to “think positive and maybe the pain won’t bother you anymore” tells me that you are selfish and just don’t like being around anyone who suffers, because you don’t know how to deal with it.
My advice is: Don’t put your mental problems on those of us who suffer from chronic pain and incurable illnesses. Keep your selfish proclamations to yourself, because they just stress us out further and only serve to make us feel guilty or otherwise at fault for our pain.
I don’t have the energy to spend listening to people who make me feel bad for being in pain. I don’t need that in my life.
People who keep that up will find that I don’t have time for them anymore, as I’ll be taking their advice and practicing aquaintance denial as my “thinking positive” tactic.