What I Should Have Said

Reprinted with permission from user amorsalado in the LiveJournal Endometriosis community:

August 24, 2009
I was at the pharmacy today, waiting in line, feeling just fine, when I was suddenly doubled over with a cramp. A lot of them I can ignore and just move through. This one I could not. I clutched my middle, took a deep breath, and did my best to straighten up. The woman in line behind me was maybe 30 years old, and she was quite concerned, asking me if I was alright. I told her that I was fine. She kept asking over and over if I was sure. By that point, I really WAS fine. It had gone as quickly as it had come.

I suppose I should have just kept insisting that I was fine and not tried to reassure her via elaboration. However, I did not. I said, “I have endometriosis, so the pains come and go a lot, but I really am alright.” That reassured her alright. She replied, “Oh endometriosis. That’s nothing right? That’s just a bad period right? I get those. I know what that’s like, girl.” Oh okay then. Well good. I didn’t say anything else once she was reassured that I was fine because endometriosis is “nothing”, but I seethed all the way home.

This is what I SHOULD have said:

Just a bad period? You know what it’s like? Do you now? Really?

Endometriosis is NOT “just a bad period”; it is a disease. It is a disorder in which tissue normally found inside the uterus begins to grow elsewhere in the body—you know, OUTSIDE of the uterus, where it does not belong. It was finally classified as an autoimmune disease in 2008. All of that notwithstanding, I can supply you with a whole lot of personal experience.

So you know what it’s like, huh? Really?

Do you know what it’s like to go to work feeling fine one cold Wednesday morning and then wake up in the hospital four days later with no clear recollection of anything that happened in between? Do you know what it’s like to lose four days of your life?

Do you know what it’s like to hear that your white blood cell count was astronomical, that your temperature was spiking at 105 and maintaining at 103, that you were hallucinating, ranting, and combative, that you ALMOST DIED?

Do you know what it’s like to blow IV after IV because they are pumping fluids and antibiotics into you faster than your poor veins can keep up? Do you know what it’s like to be in a hospital bed surrounded by your family and friends, trying to convince them that you really are okay, when you are secretly wishing that you’d have just gone ahead and died because you’ve never been so miserable in your entire life, and that INCLUDES the time when you lived in the 3rd world and had dysentery?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to spend five weeks on strict bed rest, yet be unable to actually rest? Do you know what it’s like to be unable to sleep in your own bed with your partner because it’s simply too big and not supportive enough? Do you know what it’s like to spend five weeks on the couch in a state that’s neither awake nor asleep? Do you know what it’s like to NEVER get more than 30 minutes of sleep in a row for WEEKS at a time?

Do you know what it’s like to throw up from the pain every single day, more than once? Do you know what it’s like to be totally unable to get comfortable? Not be able to sit? Not be able to stand? Not be able to lie down? Do you know what it’s like to be so weak that the book you’re reading is TOO HEAVY to hold?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to be held together and temporarily patched up with antibiotics, painkillers, anti-inflammatories, and anti-nausea drugs to make it through the most important and anticipated event(s) of your life—your wedding and your honeymoon? Do you know what it’s like to be in a country not your own, during what is the happiest time of your life, with the threat of “relapse” ever looming over your head?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to be thrown into abrupt, pre-mature, forced menopause in a quest for some relief of symptoms? In hopes that the endometrioma will shrink just a tiny bit? Do you know what it’s like to have hot flashes immediately followed by chills so violent that your teeth chatter? Do you know what it’s like to have the muscles in your legs ache so badly ALL OF THE TIME that they are never ever comfortable? Do you know what it’s like to have your insides cramp so violently that nerves pinch and make the SKIN on your LEGS hurt? Do you know what it’s like to weep violently for an hour over ICE CREAM? When you don’t even LIKE ice cream? Do you know what it’s like to go from being someone who, two years ago, could lift 350 pounds with her legs to someone who calls it an accomplishment if she can now take a 30 minute walk?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to have a “routine” 20 to 30 minute laparoscopic surgery turn into a not so routine two hour surgery? Do you know what it’s like to wake up and hear your doctor tell you that you’ve got the worse case of endometriosis she’s seen in 25 years? Do you know what it’s like to discover that she’s had to unhook one of your ovaries, your uterus, and both of your fallopian tubes from your abdominal wall? Do you known what it’s like to learn that she had to un-burry your other ovary from behind a wall of scar tissue, that you still have endo all over your bladder and bowels, that they removed all of the adhesions, endometrioma, and scar tissue that they could but that the damage was still extensive? Do you know what it’s like to hear the news that both of your tubes are scarred shut and the ONLY way you’ll conceive the child you so desperately want is via IVF, and that even with the IVF it’s not fucking likely to happen because your ovaries have been so compromised?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to be so worn down, so weak, and so exhausted that you don’t recover from said surgery? Do you know what it’s like to go back to the hospital with a post surgical infection and have to stay longer than you stayed the first time? The time you almost died? Do you know what it’s like to develop an infected pocket of post-surgical tissue the size of a melon in your abdomen? Do you know what it’s like to have the prognosis be so dire that they call in infectious disease specialists to consult on your case? Do you know what it’s like to drink a half a gallon of barium so that they can get a clear look at your ravaged insides? Do you know what it’s like to struggle to hold down that barium until they’re finished with the MRI? Do you know what it’s like to publicly humiliate yourself by vomiting on the table? Do you know what it is to have your veins so decimated by multiple IV sticks and fast push, high caliber antibiotics that after every nurse on your floor takes their three stick maximum attempt, they have to call a neonatal nurse to finally seat yet another IV? Your SEVENTH in five days?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to finally be sent home only to do another six weeks of strict bed rest? Once again living on the couch? Being unable to walk? To bend over? To sit? To lay? To stand? To shit? Once again existing in that state that’s neither asleep nor awake? Do you know what it’s like to be so bloated and in so much pain that you cannot fathom eating anything? Do you know what it’s like to live on a Slurpee for a week—one that you FORCE yourself to consume so your partner will stop worrying maybe just a little bit? That’s not a Slurpee a day for a week, by the way; that’s the SAME Slurpee all week long. Do you know what it’s like to run a fever of over 100 degrees for days on end? Do you know what it is like to be literally held together with pills and Gatorade? Do you know what it’s like to see your doctor THREE TIMES A WEEK for three months, twice a week for three more months, and once a week for three more after that before she finally feels confident enough to release you to yet another doctor?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to hand over the fate of your reproductive future to a Reproductive Endocrinologist and an Embryologist? Do you know what it’s like to inject yourself with stimulation hormones, twice a day, for days on end? Do you know what it’s like to have your ENTIRE life revolve around your ovaries? Do you know what it’s like to be hopped up on about six times the amount of hormones that the average human female would produce on her own? Do you know what it’s like to ride that emotional roller coaster? Do you know what it’s like to be stripped of all privacy and dignity while you hang upside down in a chair, with your entire lower half naked and exposed to a room full of people while they put the paltry TWO embryos you managed to produce back inside of you? Do you know what it’s like to fail attempt after IVF attempt? Even worse, do you know what it’s like to succeed and have that happiness for a few days before you watch the life bleed out of you for days on end?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to have all sexual spontaneity ripped from you? Do you know what it’s like to DESPERATELY want that intimate physical and emotional connection with your partner but have to weigh carefully how you have felt during the rest of the day or what you may have to accomplish the next day? Do you know what it’s like to crave the connection and the pleasure but still KNOW that at some point during the encounter that it WILL hurt? Do you know what it’s like to not even be able to prepare yourself for that eventuality, because it hurts someplace different every time—on penetration, or during the changing of a position, or if you move even a fraction of an inch the “wrong” way (but you never know which way the wrong way is), or upon orgasm? Do you know what it’s like to tell your partner “no” time and again when YOU DON’T REALLY WANT TO but you HAVE to? Do you know what that disappointed look is? Do you know what it does to a person? To both of them, in fact?

Do you know what any of that is like?

Because I do.

Do you know what it’s like to feel absolutely fine one second and be doubled over in pain, gasping for breath, with tears running down your face literally ONE SECOND LATER? Do you know what it’s like to lay on the bathroom floor in a puddle of your own vomit? Do you know what it’s like to have to PREPARE to have a bowel movement—to have to put a trashcan between your feet and wedge yourself tightly against the sink just in case it hurts so much that you either (a) vomit from the pain, or (b) pass out, or every once in awhile (c) both? Do you know what it’s like to be so physically exhausted that you cannot even provide a meal as simple as grilled cheese or spaghetti for your family? Do you know what it’s like to be so mentally and emotionally exhausted that a task as mindless and easy as putting away the dishes can reduce you to hysterical sobbing? Do you know what it’s like to go from being a die-hard gym rat to barely being able to drag yourself out of bed in the morning? Do you know what it’s like to be CONSTANTLY aware of your ovaries because they ALWAYS hurt—one shooting sharp stabbing pains and the other one sitting like a glowing hot ember low in your abdomen? Do you know what it’s like to not be able to make any real plans more than a few hours in advance? Do you know what it’s like to have to go in and have ovarian cysts aspirated (and I’ll even skip the details on how they go about doing THAT) every couple of months? Do you know what it’s like to have to give up nuts and seeds? Do you know what it’s like to do that while BEING A VEGETARIAN? Do you know, do you have any idea, what it’s like to have complete strangers say insulting, hurtful, and grossly uneducated things to you when they have absolutely no idea what they’re really talking about?

Do you know what any of that is like?

Because I do.

Do you know what any of this does to a person? Mentally? Physically? Spiritually? Emotionally? Do you know how it wears you down? How it eats away at your self confidence? At your self esteem? At your desire to do pretty much anything at all? Do you know what it’s like to have to watch the person you love watch you go through this? Do you know what that does to a person? The feeling of knowing they’d be better off without you? Of knowing that this whole mess really isn’t fair to them? The fear of wondering why they don’t just go out and find a whole and healthy person? Do you know what this does to a person’s outlook on the world? Do you know what it’s like to deal with all of this and still have to be strong and “give face” and be “on” so that you can be a functioning, contributing member of society instead doing what you REALLY feel like doing which is either sitting in a corner and sobbing, running shrieking through the streets, or on a really bad day simply shooting yourself in the head to make it all end?

Do you know what any of that is like?

Because I do.

So don’t you tell me that endometriosis is “nothing”. Don’t equate it with “just a bad period”. And unless you know what even ONE of these things feels like, let alone ALL of them, then don’t you DARE tell me that you know how it feels.

Because you don’t.