It would be an understatement to say I’m scared shitless.
What do you do when you wake up and your body gives up. When your leg suddenly gets shooting pain or your arm just feels weak at the muscle.
What do you do when you know you already have an autoimmune disease and are receiving treatment for it but still can’t get out of your mind the nagging feeling that there’s still something else wrong with you.
And what do you do when you want to ask for advice and you feel like you repeatedly hit dead ends.
I made a stupid decision. Or at least I feel stupid for doing it. I called my endocrinologist’s office. I called them because I don’t really have a primary doctor (I haven’t for years) and frankly he’s the only doctor I ever see on even a semi-regular basis. And I called because I asked if there was any way I could do a panel test for other autoimmune diseases. I don’t know what the hell I’m doing. Do you ask for stuff from a doctor like that? I don’t know… frankly I’ve never really been the one to be a strong advocate for my health. Well I used to, and people kept calling me crazy so I gave up because I got tired of people just saying “aww get more rest you’ll feel better!” not knowing for the past 4 days I’ve slept 10 hours a day with no relief to my exhaustion. But that’s another story for another day.
So why not consult my parents? Particularly my mother. Who’s a registered nurse. Who knows more about health than I ever care to.
You know what that sounds like a great idea. Except there’s one problem.
I sat in the chair in my counselor’s office. We’re still in our first sessions so she’s going over the basic medical conditions blah blah blah. I’m so tired of switching counselors. It’s not my choice, it’s my luck of being placed with counselors who are only here for a semester to get their logged hours so they can move on with their PhD in psychology. Once the semester is done, they’re done with me and off to the next counselor I am given. it’s a revolving door of hell. Because with a new counselor comes having to restate my entire story from start to finish. My trauma, my abuse, my medical conditions, everything. It’s like stabbing yourself repeatedly, waiting four months and then, just as wounds begin to heal and you feel like you’re getting somewhere, someone hands you a knife and says “you know, I’m gonna need you to stab yourself again so I can see what happens.” It fucking sucks and I want to scream. I’m too ~~”traumatized”~~ for the new grad student counselors (read that as they’re sheltered and don’t have the maturity to handle real issues) so that’s how I got shuffled off to the PhD students. Which is good because you do get someone who’s at least 10 years your senior with a bit more experience. But bad when they drop you in four months because they’re done with their logged hours. Everything just hurts. Physically and emotionally.
But I digress. Back to the original story.
So for the 438th time I’m hearing my god-awful medical history being read aloud so my new counselor can confirmed how fucked up I am. But in reading she missteps and says “and you have an autoimmune disease… lupus, right?”
My heart stops. The world freezes for a moment before I come back.
“No, Hashimoto’s actually…”
“That’s right,” she says as she scribbles something down. “I remember you saying something about that. Do you have lupus as well or?”
Again my heart stops.
“No,” I say a bit shaky.
We move on and continue with the session. Or at least she did. I didn’t recover quite as quickly. I know it was a lapse in judgment and she has no clue (of course she wouldn’t, I’m starting over with counselors again, she knows nothing) but hearing those words, hearing of that awful disease brings up awful memories.
As a kid I used to constantly ask my mom where her dad was. He was never around even though I saw my grandmother all the time. Every time I ask my mom bit her lip and said “he’s not here” which clearly wasn’t good enough for me. Until one day she sat me down and very solemnly explained to me that there was never going to be a fathom of the universe where I would get to meet my Morfar (that’s Swedish for mother’s father). Because three years before I was born… he died. He died right before my mother’s wedding. He was supposed to walk her down the isle and he would’ve given anything to have been there. But the colon cancer and the chemotherapy took too much of a toll on his body. All of this made exponentially worse by the fact he had been slowly dying years before any doctor found a lump in his colon.
He had lupus.
For years doctor’s told him he was mental. That he was making it up or that he needed to suck it up and deal with it. Only was it decades later when his quality of life had diminished to the point where a doctor could be sued for ignoring his health problems did people finally start taking him seriously.
It’s not like I know the full story of how everything went down, I wasn’t there for it. But don’t think there aren’t days where I get absurdly angry at the thought that maybe there’s a chance, even a 5% chance, that maybe he could be alive right now if he’d been diagnosed earlier. Who even knows. Maybe he was destined to die. But I don’t know if I was destined to accept it.
Because in his absence I was left in the hands of my only other grandfather (my father’s father)…
And he abused me. For over 10 years he emotionally and verbally abused me. And I’m not over that. Not yesterday, today or any time in the foreseeable future.
Had my Morfar lived, I would have known love from a grandfather. He was kind and caring and even my Mormor (grandmother) has told me multiple times he never was harsh to her, even when he was in agonizing pain and dying a slow, painful death. I could’ve been loved, I could’ve been appreciated. Instead I have an instinctual fear of men and relationships and have trouble believing that men do treat women well or that marriage is anything more than picking the man who will abuse you for the rest of your life.
So there’s something about the possibility that I have the same autoimmune disease as my Morfar that scares the shit out of me. And even if my counselor didn’t mean it, it still made me cry the minute I got back to my dorm room. And suddenly that knee pain feels worse. The soreness in my arm feels more intense. The fact that I want to keep sleeping even though I’ve been asleep for 12 hours concerns me that much more.
But who do I tell? I want to get tested so I at least know but how do I get the ball rolling?
Normally I confide in my mother regarding health problems. But not this time. I can’t do that to her. What do you say?
“Hey mom, I think there’s a half-decent chance I have, on top of one autoimmune disease, another autoimmune disease… the autoimmune disease that led to your father’s death.”
What’s worse is what if the tests come back positive? What if I really do have lupus? What the fuck do I tell her?
“Hey mom, you know that autoimmune disease that your dad had that led to his early demise a few months before your wedding? Well your only child has it to.”
Wow, well if that isn’t quality mother-daughter time I don’t know what is.
And so I’m walking this fine line (that’s unknown) between “I want to know” and “I want to keep my mom out of this as much as possible”
So I think, “hey I’m gonna adult this myself and call my endocrinologist and see if I can set something up to get tested”
And it went horrible.
The receptionist kept questioning why I wanted to get tested, questioned a bunch of times why I felt the need to call (even though I outright stated I don’t have a primary doctor and he’s the closest I come to one which is why I was asking him) and then gave this half-assed “well I’ll talk to him and we’ll get back to you”
So I’m not too confident that I’ll hear back.
Which leaves me back on my own and still scared as ever. Because today my body has decided that it wants to be in excruciating pain. Luckily my professor cancelled class. But as I stated earlier, sleep doesn’t solve all my problems like I wish it did. So I’m well rested and exhausted and still in pain.
It’s somebody who’s really scared that I’m a lot sicker than I think. A lot sicker than I currently know
And what if I find out too late
Maybe I’ve been here before, I know these rooms, I walked these floors, I used to live alone before I knew you
It’s not a cry you can hear at night, it’s not somebody who’s seen the light
It’s a cold and it’s a broken hallelujah