Let's Talk About Fear

I’m going to die. Eventually. It terrifies me.

I pulled my monster out from under the bed yesterday. There was a lot of kicking and screaming involved. This was the raw, emotional side of myself I have been avoiding for over 20 years.

See, I am an almost entirely cerebral creature. I think it was both inherited and by choice, but I have beaten my emotional self back so far and so often that it hurts to even consider what I feel. When my therapist asks me how I feel about something, I automatically start talking about what I think. I don’t know what I feel.

It was a defense mechanism at first. I needed it. Boy, did I need it. When I was young, I felt that if I let myself feel anything, I would collapse, consumed by having to deal with my life. When I got older, it was so big I didn’t – don’t – know how to let it go.

Those of you who read this blog know that I realized my mortality early. I was not quite six when I was the only one in my city to survive spinal meningitis. That was hard, and it made me angry. I wanted to fight. Which was good, because I needed to fight in order to recover.

Then I started losing people. My grandmother to lung cancer when I was 10, a family friend and surrogate grandfather the same year. He had a heart attack. At the hospital they told us he would get better, but he had a second heart attack and died. Then it was a peer, a friend, Paul, who died over Christmas break when a drunk driver jumped a highway median. He was 12.

I got angrier and angrier with each one. It wasn’t fair. It felt like I was always waiting for the next shoe to drop. And shoe after shoe after shoe did drop. I was in a constant state of braced for the worst. But I wasn’t afraid. Not yet.

It took diabetes to make me afraid, or rather, a gaggle of well-intentioned providers – doctors, nurses, nutritionists – to teach me that. To be fair, that was the prevailing wisdom in 1991. They would harass, harangue, and threaten. “You will die of a stroke before you’re 19 if you don’t follow the rules.” I am sure I am one of thousands who has had to unlearn how I was socialized to my own disease.

I did try to follow their rules. It didn’t work out so well. And instead of helping me find the right path, they kept trying to force me down a path I didn’t want to follow. My fear compounded when I was finally scared straight by the development of serious complications. Compounded, but never addressed.

By then, I had college to keep me occupied, at least for a couple of years. But before I could even finish that, my mother was diagnosed with pancreas cancer – a death sentence. I was sad and scared and desperate to hang on for as long as I could to the one who kept pulling me out of these things I got myself into.

That was the big one. My fear grew until all my other emotions had to hide behind it. I didn’t cry at my mother’s funeral. I would set my chin and clench my teeth and if I had to cry, I would wait until 2 in the morning, when I was sure no one could hear me, even when I was by myself in my apartment. I clamped down so hard on my subconscious that I actually didn’t dream for over 15 years. And no, it wasn’t just that I didn’t remember. I didn’t dream. I got REM sleep, but I did not allow my subconscious to participate.

I couldn’t afford to let any emotion touch me. If the floodgates opened, I would lose my self. (Not myself, but my self.) I still feel that way.

Ironically, the solution is to step away from my self, and to observe it for as long as I can, to recognize and understand whatever bubbles up. My therapist told me that in psychology, there is the rational mind (me) and the emotional mind (not me) and the best place to be is in the space where they overlap, the wise mind.

I've been running away from this for a long time. I'm not sure I even want to be in the wise mind. Rationality is easy, comfortable. It takes no energy, no change. But just because you decide you don't want to feel doesn't mean that you don't. I think that if I keep on as I have been, I will explode, which means my emotions will come out either way. I can either do it with some thought and control or wait until I have none. I'd rather it not come to the latter. So, I'll try. I make no guarantees, but I will try.

The Things They Don’t Talk About at Parties

It’s bad enough to be diagnosed with a chronic or autoimmune condition. After the initial rush of fear, anger, and anxiety about what it means, there’s a period of adjustment during which you learn your disease. You get your prescriptions, your devices, the plan your doctors recommend, and then you have to ratchet it into your life. There’s a lot of trial and error. And if it doesn’t work, you start playing with what you’ve got.

For me, that manifested itself in something called diabulimia, an eating disorder where you don’t take enough insulin to cover your food intake and basically end up starving yourself because your body doesn’t have the tools to absorb what you are eating. One article I read years ago compared the damage done to your kidneys to putting an entire turkey – not a chicken – down your garbage disposal every day. Like any eating disorder, your body will start to shut down if it doesn’t get what it needs, but the damage is accelerated because of the already-impaired immune system.

Into the woods

I was diagnosed with Type 1 diabetes when I was 14, a very vulnerable age for girls and boys. I had never been thin (it’s just not my genetic build), but before my diagnosis I weighed about 90 pounds. It was just when women’s clothes were vanity sized into size 0, and even that was a little loose. Everyone – teachers, friends -- told me how good I looked. Funny how my parents never did. They must have been worried to see me eating about 5000 calories a day and still be that thin.

When we finally figured out it was diabetes, doctors put me on a 2500 calorie diet and wouldn’t take me off. I gained 60 pounds in six months, started associating insulin with weight gain, and hello, eating disorder. It lasted six years and almost cost me my vision (retinopathy) and my mobility (neuropathy), and did cost me at least 40% of my kidney function.

Out of the woods

I was lucky. We had a family friend whose wife was diabetic. When I started getting retinopathy, he arranged to send me to the Joslin Clinic, which is the gold standard for diabetes research and treatment. They helped pull me out of it.  I was 20 by then. If I had continued, I would have killed myself eventually.

Apparently, diabulimia is a fairly well-known phenomenon, although it is not recognized as a complication of diabetes either in the United States or the United Kingdom. I never heard a medical provider mention it until long after I’d been scared straight. Granted, my first endocrinologist was an egotistical jerk, but even as I pulled myself out of that very bad place, no one ever named it and told me that I wasn’t the only one.

There’s a danger in this lack of discussion. I suspect that teenagers aren’t the only diabetics vulnerable to diabulimia, and I suspect that other chronic and autoimmune conditions have equally dangerous potential when we stray from medical advice – I’m looking at you, opioid addiction.

Don’t get me wrong. Being able to understand your body and manipulate your treatment can be vital to living your best life, but there are many paths you can take and not all of them are healthy. If your mind isn’t healthy and you are suddenly handed a tool you can use to get you what you think you want, like an “ideal” body weight, it’s just so easy to take the unhealthy path.

A good provider and a good therapist may have been able to keep me from that path, or at least shorten the duration. If we had known the danger, if we had been able to put a name to it to understand it, we would have been able to see the path out of the woods. It’s a lot harder to remain in a dark place when you can see a path toward the light.

Are You Seeing The Forest or The Tree?

I’ve wanted to talk about reasonable accommodation for a long time, but I had to leave my former employer before I felt comfortable doing that. It turns out not every employer takes the definition of “reasonable accommodation” to heart.

Reasonable accommodation says that, under the Americans with Disabilities Act of 1990, employers can’t discriminate against you because of a qualified medical condition. The definition of disability is opaque. Suffice it to say most, if not all of us in the chronic and autoimmune community are covered.

But what does being covered by reasonable accommodation actually mean?

The ADA says that if our conditions get in the way of us performing our duties, employers must make “reasonable accommodations” for us. This can include special office furniture, flexible schedules/telework, or even altering duties. For over a decade I had informal accommodation, mostly in the form of telework to make up for doctors’ appointments that would have eaten through all my vacation time. I am a contractor, so I made arrangements with my client and company staff on the project. No one seemed to care as long as I got my work done, which I did.

That changed in the summer of 2016. The details of the situation are for the next posts, but this situation turned out to be so detrimental to my health that my doctor wrote a note saying I could no longer be on that project. Nineteen months later, I still haven’t recovered.

My former employer’s failure to comply with reasonable accommodation laws caused more damage than I thought, and not just physically. One of the people responsible for the decision to keep me in the bad situation was someone I’d worked with closely for nearly a decade. I trusted him, which is not something I do easily or often.

When this colleague blocked my escape from the situation, it felt like betrayal, and man did that hurt. But instead of allowing myself to be sad and hurt, I did what they told me to and let righteous indignation sweep in to fill the vacuum where the hurt and sadness should have been. I built a bubble to protect myself from feeling what I didn’t want to. I was afraid that if I felt that, I would fall down a rabbit hole and not be able to climb out.

So, I built my bubble, and in doing so, I kept out all the good stuff, too: the excitement of a new job and good, impactful work; the satisfaction of maintaining this blog and connecting with some amazing people; and the support and plain old happiness I get from simply spending time in the company of people I love and trust. The mental effort it takes to maintain a protective bubble like that is massive. That’s the vicious circle I should have been looking at.

I have maintained my bubble since I started that awful project, and when my colleague, who was also my boss, couldn’t even be bothered to say, “Sorry to hear you’re leaving. Good luck in your new job,” a couple of months ago, it made it worse. After a decade there was not even an attempt at common decency, so I withdrew even more. Without the good to balance the bad, I felt more and more exhausted, making me less and less inclined to attend to my own health needs.

Now that I know what to look for, it will be easier to let go of my bubble, especially now that I don’t work for that company anymore. But that doesn’t mean it will be easy. I will have to allow myself to feel things I don’t want to feel and just be ok with it – my version of “leaning in.” That might take a while.

While I am not in a good place right now, I am not in a state of mind meriting a formal diagnosis, but obviously, my mental health has had a major effect on me physically, and it has derailed me for now. I believe it was actually dangerous for a while, with my diabetes out of control, and the resulting weight gain, which makes everything worse physically and metabolically. The one thing I did right, even during the worst of it, was go back to my therapist. I had been doing so well before that, I hadn’t needed treatment. But I needed it then. It felt like a lifeline.

Everyone has issues, sometimes more serious than other times. This is why it’s so important to have someone who can help -- a good therapist, access to a hotline (link to hotline listing), or someone who is trained to help you out of the more serious issues. I may have gone years trying to hold up my bubble, fighting with myself over what got my limited energy. Now it’s time to make improving my mental health a priority, and with it will come the energy I need to put myself back together physically. Or at least it will be a big step in the right direction.