the post-traumatic fear spiral

I’ve learned a lot this year about loss. About child loss. About infertility. About losing faith in your own body. About fear. Because I’m prone more to anxiety than depression, that’s how losing E has affected me: by making me scared. I read about parents who, after losing a child (or even the idea of a child), can’t get out of bed for weeks or months. Can’t work. Can’t imagine moving on. That hasn’t been the case for me, but I have been shattered in whole other ways.

Last month, my therapist said that, after loss and/or medical trauma, it is extremely common for people to experience medical anxiety for about a year. When someone goes through medical trauma, they see how precarious life is. They see their own bodily susceptibility to disease. To destruction. It’s hard to shake. This happened to me. I feel like I watched life passing away (Emmett’s. Parts of my own. Parts of J’s.) on January 19th, and I just stopped trusting. Learning how to trust my body again has been more difficult than I could have imagined.

Part of this struggle comes in the form of self-blame. There’s this quiet voice since she died that says, over and over again: “there must be something seriously wrong with you. Babies don’t just not have feet. You broke her. And her being broken means that you’re broken too.” I haven’t talked about it much because, when I have, my amazing friends and family have rallied to tell me it isn’t my fault. And I love them for that, but it doesn’t help. This takes self-forgiveness, and I haven’t been ready for that. It also takes self-trust, and I don’t know how to get that back. Things fell apart, and now I wait vigilantly for everything else to unravel too.

Since that night, I’ve thought I was dying of one thing after another. Of Thyroid Storm. Of hemorrhage. Of an allergic reaction to wet wool (seriously). From food allergies. Or Mitral Valve Prolapse. Or some other dangerous heart murmur. Or swelling caused by blood clots. And now I’m obsessed with this particular (and rare) kind of cancer that causes flushing. I’ve had flushing for many years now. Sometimes it gets worse. Sometimes it gets better. My mom had it for decades. Two great aunts. One of my closest friends. Another friend’s whole family. I know it can be caused by anxiety. And thyroid imbalance. And food sensitivities. And skin sensitivities. And I have all of these things. The medication I’ve been on for ten months to treat my hyperthyroidism has made me hypothyroid, and that is causing lots of symptoms (edema. weight gain. fatigue. thinning hair. maybe flushing.). I hope to go off of it soon, but they want me to be even more hypo when I stop because research shows that staying on the medicine for a year, and being firmly hypo when you stop taking it, increases your chances of entering thyroid remission.

So all of that, all of those reasons for flushing, and I obsess over one doctor who proposes that maybe it’s this extremely rare thing that happens mostly to people in their fifties. Mine is in my cheeks, ears, and knees. This rare disease is usually face, neck, and chest. I can see the irrationality of this, but I can’t seem to let it go. So this past Wednesday, I went to see a general practitioner to request tests to rule it out. Because the fear was getting to me. But the person I went to happened to have lost her husband to this very rare disease. What are the odds of this? So, though she tried to reassure me that the odds of me having it were infinitesimal, she also gave me a lot of information. Too much information. She kept calling it, “this disease.” She kept comparing me to her husband. Because she no doubt has PTSD about her loss. So now, as I’m waiting for tests to come back, I’m finding myself in the biggest fear spiral I’ve seen since the months after E. Moments of sheer terror.

I don’t want to live this way. This setback aside, it has gotten better. And even this feels like an opportunity: to mourn a little more. To face and let go of this terror. But it’s hard. And it’s embarrassing. And it makes me feel like a bad friend, and a bad wife, and a bad mama to this boy who deserves the attention I’m giving to fear.

It’s hard for me to write these things, but this community is so full of compassion and love and understanding. And I thought that, maybe, starting to tell the truth about this struggle might rob it of some of it’s power over me. Because I want to be in these beautiful moments I’m living, not in some hypothetical fear-based scenario in my head. I want to be free of this. I won’t have these results until the middle of next week, but I don’t want to need the results to trust my body. I want to acknowledge the fear without letting it drag me under. I don’t want to live this way and, most of all, I don’t want to put this on our little boy, to teach him this. But it is hard to let go of the fear that something will take me from my family. It’s hard to trust again.

 

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4 thoughts on “the post-traumatic fear spiral

  1. The fact of you writing this and sharing it means that you are doing the work, right? You’re not avoiding or running away or any of that. You’re not slowing down the process, you just haven’t gotten as far as you wish you had.

    It IS hard but I can’t imagine that anyone thinks you are a bad wife or friend or mama. Maybe it’s true that you could give more energy to everyone else if you had less going on in your head, but I can’t imagine that anyone in your life doesn’t feel the warmth of your attention.

    {{{{{HUG}}}}}

  2. R,
    I think that writing through fears like this, possibly even more than speaking about them, can be so helpful (it’s how we academics process things, I guess). It seems like fear and anxiety take so much of our attention and energy, and that, at times, it seems beyond our control to stop it.

    But thinking about bringing energy and attention to the present reminds me of past blog posts of yours, where you’ve documented lovely things about a weekend and posted pictures of your comfortable home, adorable cats, and wonderful wife and son. Even though you feel these fears, you are also one of the best people I know about being thoughtful and grateful for the blessings in your life. The difficult feelings of fear and grief bring the impossibly happy and lovely things into relief and make us appreciate them more.

    Know that I am thinking of you, and that you can always talk or write to me if you need to.

    Lots of love from,
    M

  3. Wow, this sounds so hard. I agree with the folks above who encouraged you to be gentle with yourself as you sort through this. It is taking a lot of your energy to figure this stuff out right now, but it won’t always be this way. You are doing this work now in order to get back to a place where you can be present to all of the people and events around you. It is because you are such a good wife/parent/friend that you are writing this post and talking about these issues with your therapist and doing all of the other things you are doing to sort through this stuff.
    I think anxiety is hard to talk yourself down from because we ARE vulnerable. Really horrible things DO happen to people sometimes. Mostly we get through life by not thinking all of the time about the potential for big bad things to happen. But when they have actually happened to you it becomes even harder to ignore that reality. And harder to balance that reality with the reality that most of the time the horrible outcome does not happen.
    Also, how incredibly unhelpful of that doctor! I know she must have been in the midst of her own struggle, but it was so unhelpful of her to try to sort it out with you.

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