Currently, I’m working my way through a series of posts related to lessons learned from my Graves’ Disease. It’s my therapy. The first one is here.
Last autumn, when I finally admitted that I was sick, I discovered my support system.
I found, to use Glennon Melton’s term, my net.
But my net is only one part of a much bigger one. So this post is also about The Net. I like that word for as a metaphor for our social support systems. I like it because sometimes there are holes in nets and we have to work to patch them. Otherwise people may get left out.
Looking back, I got sick long before I realized it. But I waited far too long to do anything about it. I attributed how awful I felt–the sensation that I was on overdrive and totally exhausted, the racing heart, the heat sensitivity, the sleep issues, the constant hunger, the shaking hands–to age and stress.
Actually, those may have been factors in my developing the disease, but there was a much bigger battle inside me as my immune system launched an assault on my thyroid.
And mostly I didn’t want to talk about what I was feeling because I didn’t want to be a complainer. (I see now that is a sense of shame we folks with long-term diseases struggle with. How do we express our pain without feeling like a burden? Not easy. But I digress…)
Over the course of the last year, it was my net that saved me, time and again.
Let’s start at the diagnosis. A friend was experimenting with a gluten-free diet shared privately how much better she felt. I thought I would try it, too. It helped a little, but not enough. It was time for my annual check-up with my allergist, who expressed concern that maybe I needed to see my general practitioner. He, in turn, insisted on the tests that identified what I had–even though I didn’t tell him all of my glaringly diagnostic symptoms because I was so dismissive of them myself.
Once I got the diagnosis–and slipped into thyroid storm two days later only to follow it with the emotional, physical, and psychological pain that Graves brings when at its worst–my net held me up. I’m not sure I would have survived if it hadn’t. More than one friend kept my kiddo during a medical appointment. (One of them even sat in the lobby of a gastroenterologist’s office while I underwent a very painful physical exam.) Another friend sat with me on the couch as I had a grown-up meltdown. Yet another one–a reader of this blog whom I now count as a friend–sent me a bottle of hair care product when I discovered that my skin is now sensitive to wheat-based cosmetics.
If we think of a net as being round in shape, we can imagine it having concentric circles. I think of these as circles of care. The ones at the heart of the net are the ones who are the most intimate caretakers.
At the center isn’t always the people in closest physical proximity.
There were two people who tended to my mental well-being from hundreds of miles away, people that I met because of the Internet. In private conversations they told me again and again–while my brain struggled with Graves-induced depression, a pain unlike anything I have ever felt physically–that I would get better.
They believed I would be healthy again even when I could fathom what that would be like. They and my family believed on behalf of me, when I couldn’t imagine that I’d live to see “better.”
If you’ve ever taken care of someone who is very ill, then you know that the experience isn’t always warm and tender. I was no passive patient in a powder-blue bed jacket resting peacefully and eating bonbons. I was up and about, trying to raise a kid and write a book. With the hormones surging inside of me, I could be snappish, angry, or melt into tears at any time as I rode the waves of my emotions.
Graves’ rage is a real thing. Don’t believe me? Ask my family.
My endocrinologist, in his warm Mexican accent, told me early on to remember I would experience a great deal of “emotional lability” and that, until I got better, I couldn’t easily control it.
Every time I’d feel my emotions overwhelm me, I’d try to think of what he said. I forced myself to remember that the rage, anxiety, hostility, and pain that I felt wasn’t “me” but rather the byproduct of the thyroid trying to fight my immune system off in self-defense.
My state of mind and my emotions were collateral damage.
But my net? It held. Even when I raged.
Thank God it held.
Because of this experience, I find myself in agreement with Glennon’s therapist who told her:
“Your life has taught you that nets are needed. And that in this country we don’t have enough of them. And that even in families where there is a lot of love there still needs to be a net.”
Let’s weave some more nets.
More nets all ’round, please.
And then let’s continue to link them together, to build connections between our nets in case the one nearest us fails and we need to jump to another one.
Because, sooner or later, we all need a net.
I’m on Twitter (@redwhiteandgrew) and I now follow the Graves’ Disease & Thyroid Foundation. Give ’em a follow, too, and a shout out. Working together, maybe we can help educate the public about this disease. (The social network is a net, too. In fact, “net” is at the heart of it.)