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.

The good that won’t come out.

endometriosis, suicidal ideation

Feelings of worthlessness and guilt are pretty common in major depressive disorder, and I’ve been plagued by them for years. My health issues feed these feelings, so all in all it’s a pretty unpleasant experience when the mental and physical illnesses get together and decide to throw a party in my head.

I was diagnosed with endometriosis when I was 21 years old, after several years of suffering from severe pelvic pain and trying to find a doctor who was willing to take my concerns seriously and perform the exploratory surgery necessary for a diagnosis. Endometriosis is a particularly nasty disease¬†and can be difficult to treat, partly because treatments that previously worked will stop working for no apparent reason. In short, it’s incredibly frustrating and everything from the waist down hurts like a mad bastard most of the time.

I had a huge flare-up in October 2012…and then basically one flare-up every month after that. As a result, I missed a ton of work and eventually just quit my job because I was going to get fired anyway. I’m currently tutoring and am on the active sub list for a couple of schools, which works out well because if I happen to be unable to get out of bed (because of the horrific pain) on a particular day, it’s not like I’ll get fired.

However, we’ve taken a hit financially because I don’t have a steady job. Also, the necessary visits to the ob/gyn can be pretty costly. For example, every time I end up in urgent care because my pain is spiking to about an 11–which is basically the “I am bleeding from the eyes” level–it costs $144, which insurance won’t cover because we haven’t met our ridiculously high deductible yet. This means I end up crying it out on the couch more often than I’d like, but I can’t justify spending that amount of money just to have my vitals taken and be handed a prescription for narcotics.

This disease can have some pretty severe emotional repercussions as well. I feel helpless a lot of time time and hate not being able to leave the house. I feel bad about myself for not being able to do everything I want to accomplish, and I often feel that I’m more of a burden to everyone, emotionally and financially, than I’m worth.

In short, it can be difficult to see myself as more than my illnesses, and that certainly doesn’t help the depression. In fact, it feeds it. With MDD comes a little voice in the back of your head that whispers (or screams, depending on the day), “You’re worthless, you’re a waste of space, life is pointless, just end it.”

My job is to fight that voice as fiercely as I can for as long as possible, but some days, it’s harder than others.