Insensitivity.

endometriosis, stigma

There’s been a recent influx in the amount of ignorant and downright insensitive comments made to me about my endometriosis, and I’m not quite sure how to deal with them.

They range from the hopeless (“You know, at some point they won’t be able to do anything more for you and you’ll have to learn to live with the pain flares”) to the uninformed and offensive (“At age 30 or 35, they’ll probably tell you it’s time for a hysterectomy”), and all carry the assumption that I am being irresponsible for not being able to work and unreasonable for wanting more than living life at a daily pain level of 7+.

Even when I try to educate or simply shut the person down by sharing actual facts about this horrible disease, I’m treated like I’m just making excuses or don’t know what the hell I’m talking about because I am young (24). And to be honest, I’m running out of energy to deal with these people, which is unfortunate because 90% of the comments come from relatives. I used to be able to come up with snappy comments to shut the person down before things got out of hand or affected me too deeply, but now all I seem to be able to do is internalize it and watch helplessly as I self-destruct.

What do you do when people just plain don’t want to learn about your affliction and prefer their own misinformation to the hard facts?

It’s true that there may not be a lasting solution for this illness that will allow me to return to work and live pain-free, but I feel that actually saying those things to me is cruel, amirite?

D. finally snapped tonight after watching me struggle to explain the disease for the umpteenth time and said, quite bluntly, “Think of it as cancer without the cancer.” Endometriosis is terribly invasive; it feeds on estrogen and burrows deep into the pelvic organs. It has even been known to grow on other organs, such as the kidneys, lungs, and brain in more severe (and admittedly, rarer) cases. It is incredibly painful, and the level of pain experienced by the sufferer is not always proportional to the disease’s stage. And while the growths are benign, the disease causes a host of other health problems along the way in addition to wreaking emotional havoc on the sufferer and her* loved ones.

Lately, I’ve been feeling a lot worse physically and very hopeless. I can’t even remember the number of times I’ve said, “I don’t want to live this way anymore.” All I can do is hope for a better tomorrow, that I’ll be able to see a pain specialist soon and that he or she will be able to help me come up with a long-term solution for managing the symptoms. My ob/gyn is against operating because my first surgery (a diagnostic laparoscopy performed in March 2011) only gave me about a year and a half pain-free. As it stands, I’m at pre-op levels of pain; I’m just better at functioning while I’m in severe pain because my body has had time to adjust.

It’s frustrating that despite my best efforts to educate, to frankly discuss my personal experiences with a very sensitive, personal illness, people still continue to assume and make hurtful comments. It’s not that I’m thin-skinned; it’s that this disease has exhausted me to the point that I can’t help but take the rudeness and insensitivity to heart.

People exhaust me.

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2 thoughts on “Insensitivity.

  1. I know exactly what you mean, and it has been exactly like that for me recently. I’m 24 aswell. Thanks for writing this down, it made me feel so much more sane to read your thoughts since they are exactly the same as mine.

  2. This may not work with everyone but I did this with my family, my extended family and some of my more important friends and it helped A LOT. I wrote a letter in which I explained what was going on with me, what my feeling on the subject were, and how I expected them to treat me and the actions I would take if they crossed the boundaries I was setting. I gave each of them a copy of the letter and when they started to said or do something insensitive, I’d remind them of the letter and walk away. This worked on most everyone that received it and they learned to respect me and my boundaries. I was 18 years old at the time and was dealing with a lot of she just a kid what does she know. After the letter they realized that my 18 year old self was a lot smarter than a lot of them knew.

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