Hashimoto’s, Mental Illness, and Empathy

One of the best things my mother ever taught me – and she may not even intended to teach it to me – was empathy. The ability to see the world as another might see it. The ability to feel as another might feel.

I am not always capable of empathizing, and until I got sick at the beginning of November with Hashimoto’s Thyroiditis, I’m not sure that I was truly empathizing with Jonathan having schizoaffective disorder. I was definitely sympathizing, and I empathized to the degree I could, but I was limited: I’d never been psychotic, generally had some level of emotional equilibrium, and was rarely irrational or paranoid. I hadn’t been given to unpredictable emotional outbursts in years.

I felt, given my background, that psychologically I was fairly healthy, thanks, in part, to nearly 40 years of therapy on and off, and, in part, to a mind that was capable of discussing and modifying my own conflicted emotions. In short, I was capable of “working through” most of my own emotional baggage.

But then…

On October 18, I had to go and find out that my TSH level indicated I was hypothyroid, and I was then prescribed, and gladly took, Levothyroxine.

The drug made me crazy. And I mean that exactly how it sounds. What had begun as relatively minor symptoms of hypothyroidism — a weight gain of 10 pounds over a year and difficulty staying asleep — turned me into a woman, who couldn’t remember why she had gone into the pantry, the laundry room, or the bedroom. Worse, it turned me into a woman, who remembered things that hadn’t happened, remembered bringing books with me into the bathroom, putting out the dogs, and most dangerously, putting Jonathan’s meds away, which I hadn’t done. As a result, twice I misplaced Jonathan’s meds. Not safe.

I had to turn over the control of Jonathan’s meds to one of the caregivers, who hadn’t lost her mind.

Worst of all, at least from my perspective, the drug made me paranoid, which I’ve never been, and it made me consider suicide for the first time in my life.

What exacerbated the whole situation was my primary doc’s nurse kept telling me that levothyroxine was an easily tolerated drug, and that it took 6 to 8 weeks for it to actually get into my system, and to stay on it. The urgent care doc told me the same thing. The drug was easily tolerated, and I needed to give my body a chance to adjust to it.

The way I looked at it, if I killed myself, there’d be no way for my body to adjust to anything, on November 7, I went off the levothyroxine. Against medical advice. Technically, by now – the middle of December – the drug should be completely out of my body. Perhaps, it is. I don’t know.

I have, however, read that if a person with hypothyroidism is given too low a dose of levothyroixine, or another thyroid drug, it can make the hypothyroidism worse; it can exacerbate symptoms because it can cause the thyroid to stop producing the same amount of hormone it had been producing, and, as a result, the person has even less of the necessary thyroid hormone, and s/he is made worse, at least temporarily.

The problem is I was made so much worse by the drug (or perhaps the dose) that I couldn’t stay on it for 6 to 8 weeks. My mind couldn’t walk me through my emotions; it couldn’t tell me how fluid emotions are, and how they’d change and how I’d feel better. Eventually. My mind couldn’t even tell me to call my therapist or a suicide hot line.

Luckily, somehow there was enough of my mind left to tell me that I might be having a reaction to the drug, so I went off it.

And although I now feel better than I did, I still don’t feel good, and I still don’t feel as well as I had before taking the levothyroxine. I still have mood fluctuations that I can’t seem to control, and my thinking is pretty unreliable.

An example: I keep Jonathan’s meds in a locked safe, and every night before I go to bed, I put out the meds he needs for the next day.

Last Monday, about 9:00 in the evening, I was settling down for the night, so I went to the safe, tapped in the PIN on the keypad, and the safe wouldn’t open.

I tried again. Still it wouldn’t open. Then I wondered if I could have forgotten the PIN. I knew I hadn’t, so I tried once more, kept getting an error message.

So – my thinking intact – I called a locksmith, explained the problem, explained that Jonathan couldn’t be without his meds and that I needed someone to come out and get into this safe. The guy on the phone said, sure no problem; it would cost $38, but the safe would be broken and unfixable. “Fine,” I told him.

A few minutes later, someone from an 800 number calls – too late to be a creditor, so I pick up. It’s the locksmith; he apologizes profusely, but he no longer has anybody in the Albuquerque area. Unknown to me, I’d called a dispatch center somewhere outside New Mexico.

So, okay. By nature, I am resilient, a problem solver. I call another locksmith. First thing I ask if this is a local company and do they service the Albuquerque. They do. I explain the problem; the guy on the other end apologizes profusely, tells me his company doesn’t work on safes and very few companies do and that I should call yet another locksmith.

Before I can call yet another locksmith, Jonathan texts me about some of the friends he’s been contacting on Facebook. I text back that I’m having a breakdown – meaning I’m about to lose it, meaning I’m about to have the Screaming Mimi’s. Jonathan thinks I mean I’m about to have the kind of breakdown I’d told him about regarding the levothyroxine. Understandably, he’s concerned; he texts me to get in touch my therapist. Remember, he texts me, you told me to make sure to remind you.

It’s not that kind of breakdown, I text back, I can’t get into the safe where the meds are. And he lets me to know to screw it, that he’s already manic, and in the middle of rapid cycling, and who cares about the meds.

I don’t know that at the time, he no longer is anywhere near the phone.

So I now call yet another locksmith, who tells me that yes, the company works on safes, but that if he sends someone out, it will cost me $200, and the safe will be destroyed.

I am silent. I don’t have $200.

He asks me what kind of safe it is and what kind of error message I’d received, so I tell him. He tells me that probably the keypad simply needs new batteries, and all I need to do is remove the keypad and replace the batteries.

Okay. I am cheered. I thank him and thank him. I am damn near gushing. I know how to change batteries.  That I know how to do, for sure.

What I don’t know how to do is remove the keypad.

I call the guy back. He tells me about the little tiny screw at the base of the keypad. I go find a little tiny screwdriver for the little tiny screw. I remove that little tiny screw, put it somewhere safe, which means I have now lost that screw because I can’t remember where that safe place was, but at any rate, I have managed to remove the screw.

Now, I try to remove the keypad. I tug, pull, turn it one way, then the other: It won’t come off.

I call the guy back; he tells me that he doesn’t work very frequently on the type of safe I have, but he’s pretty sure I either need to turn it to the left or to the right or pull it straight off.

I go back to the safe. I am exhausted by now and close to tears. By now, it’s 9:30, and all I really want to do is crash out in front of the TV, but Jonathan’s meds are in the safe, and Jonathan needs them.

So, I turn the keypad to the left, to the right, and then just pull it straight off. I am elated. Now all I need are four AA batteries.

I can’t find them. I text Anne, one of Jonathan’s caregivers; she tells me that there are AA batteries in the casita – where Jonathan is. I text him that Anne said there were AA batteries next to the sink, and could he please bring them to me.

He doesn’t answer.

I text him that I need four AA batteries.

He still doesn’t answer.

I text him that I need his help. Could he please help me?

Still no answer.

I text Anne that Jonathan won’t bring me the batteries. She responds by suggesting that Jonathan is asleep. I text back that he’s not asleep. He’d just texted me 15 minutes ago. He doesn’t care, I text her. He doesn’t care that I need help.

I text his psychiatrist, tell her about the problem with the safe and how Jonathan won’t help me. She texts me that maybe he fell asleep.

Now, I’m pissed.

Anne texts me that she can bring batteries to me tomorrow. That’s not the point. I text her, “No. If Jonathan doesn’t care enough to bring me the batteries, so I can get into the safe, then I’m not giving him his meds.”

His psychiatrist texts me not to worry about the safe, that she can reorder all his drugs in the morning. I text her what I’ve just texted Anne.

Even as I’m texting both the psychiatrist and Anne, I’m thinking that I can’t not give meds to someone with schizoaffective disorder. At some level of my brain, I know this, but at some other level of my brain, I’m going straight to Jonathan isn’t willing to help me, Jonathan doesn’t love me, Jonathan hates me.

I decide at 9:45 – and I’m already in my pajamas – that I’m going to check into a motel and get my head straight, and that it’s good that I’m already in my pajamas because I won’t need a suitcase. Then I think it’s bad that I’m in my pajamas because then people will look at me funny. Like I’m crazy or something. In my pajamas with no suitcase.

In addition, it’s 15 degrees out, and the roads are icy. I text my friend Pat, tell her I’m going to check into a motel for the night.

In the meantime, another one of Jonathan’s caregivers Jenna calls me. I start sobbing, and in between crying, I keep apologizing for crying and telling her I just want to feel normal again. She tells me it’s okay and suggests that Jonathan may be asleep.

Why does everyone keep telling me that?

I text Jonathan, let him know I’m going to leave for a while. I text my friend Pat again, tell her I’ll just for a drive. In my pajamas when it’s 15 degrees out, and the roads are icy.

She texts back ALL IN CAPS, to please, please be careful. It’s icy.

I start crying again, decide I’ll go over to the casita myself and find the goddamn batteries. I can’t find my shoes, so I slip on a pair of Jonathan’s. (I wear a woman’s size 5 1/2; Jonathan wears a men’s 11.) The shoes flop off my feet as I stomp and slide all the way over to the casita. I pull the door open with a bang, hoping that I wake him up, if he is indeed asleep.

I stomp into the kitchen.

“Hey, baby,” he yells from the TV room.

When I don’t answer, he asks what’s wrong. I don’t answer, just keep rummaging through the drawers. Then he starts getting mad: “What’d I do?” he asks. “I didn’t do anything wrong.”

Finally, I find the batteries.

“I needed 4 fucking batteries, Jonathan,” I finally say. “That’s all. Just four fucking batteries, and you couldn’t bring them to me?”

And I leave the casita, banging the door behind me, go back to the safe, change out the batteries. The safe still doesn’t work.

I call the locksmith back. If he comes out in the morning, he’ll charge only $88, but the safe will still be destroyed.

I tell him I’ll call in the morning.

Then Jonathan starts texting me: “Sure, Maureen, go ahead and leave. I’ll see you in court.”

He thinks my leaving means I’m divorcing him.

I go to bed, crying. My head isn’t working; my emotions are out of whack, and this – all of this, whatever ‘this’ is – is just too hard.

When I see the endocrinologist the next day – the doctor I thought would be able to help me get a handle on the Hashimoto’s – I start crying when she asks me how I am. She excuses herself, tells me she needs to check on another client, and will be right back.

When she returns, she tells me that my thyroid levels would not be causing the emotional and cognitive problems I’m having, and, although she is willing to prescribe a minute amount of Armour, a natural thyroid medication that can work at getting my Free T3s up, which may, indeed, make me feel better, she doesn’t want me taking it until I start working with an holistic psychiatrist, who doesn’t take insurance, so I wouldn’t be able to afford her anyway, and besides I don’t think I need her.

In my opinion, I have a physical problem that is causing the emotional and cognitive problems and not the other way around.

I leave her office and sob all the way home.

The upside of all this?

It has given a much greater appreciation for what Jonathan – and anyone with a severe mental illness – must experience:

First, I cannot “snap out of this.” What worked in the past – deep breathing, meditation, exercise – no longer works. The thyroid problem leaves me short of breath and although my yoga instructor has shown me how to get my breath more deeply into my belly, it is very difficult to do. Almost impossible. What I call ‘catching my breath’ rarely happens. I seem incapable of doing that any longer.

How does that correlate to what Jonathan and others who have a serious mental illness? I can’t count the times Jonathan has been told, either directly or indirectly, that he needed to “snap out of it,” or “man up,” or how much better he’d be if he’d just get up and get moving.

Yes, exercise helps. Absolutely. But when you’re sick and your mind isn’t working like others,’ it is nearly impossible to get up and get moving. It requires incredible effort.

And Jonathan, and others with a severe mental illness, will never be capable of “snapping out of it,” anymore than a person with cancer can “snap out of it.” Mental illness is just that – an illness. It affects the brain – the cognition, the emotion, even the ability to regulate one’s body temperature.

I’m not suggesting that I – or people who are actually mentally ill – should be allowed to behave inappropriately, as I was doing with the safe and as I did on Saturday when I knocked all my papers to the floor because the insurance company got my policy information wrong, but I am saying – and perhaps requesting – that people who are not mentally ill deal with those who are with compassion and with the understanding that those who suffer from severe mental illness – schizophrenia, schizoaffective or bipolar disorder – may actually be facing greater challenges than anyone realizes.

In addition, those with a severe mental illness are frequently dismissed by the medical profession, just as I was dismissed by my endocrinologist. It takes more than a medical degree for a person to be able to empathize with emotional distress. It’s been my experience that most people are uncomfortable with emotional pain – theirs and others. They want that pain to go away. Quickly. They want it controlled.

And sometimes the person in emotional pain, as I was when I saw my doctor, can’t make it go away, can’t get it under control.

I understand from what I’ve most recently been reading that the amygdala, in the brain helps us control our emotions, and the hippocampus helps us remember. Based on how I’m responding to the Hashimoto’s, I’m guessing – and I’m not an M.D. so this is strictly a guess – that the hormonal levels in a person’s body help keep the brain, including the amygdala and hippocampus healthy. When the hormones get out of whack – and my lab reports show they are out of whack – the brain doesn’t work right, and the person has what appears to be irrational fluctuations in emotion and can’t remember much of anything.

So, to put a positive spin on where I’ve been physically and emotionally since about mid-October, I have learned, through experience, greater empathy for Jonathan and for any others suffering from a severe mental illness.

If what they suffer is even half of what I have endured – and I’m pretty sure what they’ve suffered is at least double that of what I’ve endured – then I can assure you, first hand, that mental illness pretty much sucks.

So here’s to all of you who may be suffering a mental illness (or any untreated illness that is messing with your emotions and cognition):

I get it. I really truly get it.

 

 

Thank you to DiscoverySchool for the clipart.