Let me tell you one of my secrets: I have anxiety.
I don’t mean the kind of anxiety you’d feel if a package hadn’t arrived days past a delivery date. Or if you were lost in an unfamiliar place at night trying to find your way home. That kind of anxiety is normal.
My anxiety manifests as irrational fears that pop out of nowhere and extreme jumpiness around certain stimuli (such as a barking dog). Now that I’m pregnant, my hormones seem to trigger it more often, especially when I lack sleep, which is often the case. Insomnia strikes often these days, with anxious scenarios popping into my brain. Anxiety makes it easy to zoom in on the what if’s, scrutinize them one by one, and imagine each doomsday scenario like a horror film stuck on repeat.
So, how do I manage to be a halfway decent caregiver? Don’t I grow anxious about my husband’s hemophilia? What about the future? How does anxiety affect — or not — the way I handle my husband’s bleeds and injuries?
Having a partner with hemophilia actually helps me compartmentalize. Instead of worrying about the future, I focus on what I can do now. I think: What can I do to help him — today? Instead of obsessing over my husband’s injuries and believing — irrationally — that the future is doomed, I see them as natural occurrences that are part of his personal “normal.”
Thankfully, I’ve seen enough bleeds to know he’ll be OK, as long as he gets his transfusions promptly. He also exercises regularly to strengthen his muscles and joints.
I don’t allow my anxieties to shape the way I think of him, because if I did, I’d end up treating him like a sick person all the time. However, I do my best to stay real enough to know that he has physical limitations. I don’t push past his boundaries, which would hurt him in the long haul. I’ve learned my fair share of lessons about that, too.
Lately, it’s been somewhat challenging with my pregnancy prompting all sorts of questions about an uncertain future. My husband also worries, mainly about our baby’s health. (My husband takes epilepsy medication, and we don’t know if it will affect the baby’s development.) We can only hope and pray for a healthy baby with a healthy brain.
While nothing is certain, I’m trying to stay healthy by eating well and avoiding chemicals and polluted areas. We’re contemplating having costly scans done on our baby that would provide detailed information about the risks of certain chromosomal disorders.
Thankfully, hemophilia is not a concern for our baby, but it would be for our grandchild. And it is definitely something we will educate our daughter about. When she reaches a certain age, we will talk to her about hemophilia, the possibility of her bearing a son who has it, and the options she will have.
That’s the ideal, of course. We hope to make it happen.
Meanwhile, my anxieties will always be there. I had another attack recently that caused me to act out against my husband because I was consumed with irrational thought. We talked about it later and reconciled our differences. I realized that I had been speaking from a place of anxiety and lack of sleep. He told me the sweetest thing — that he knows my anxiety is a part of me, and while it can be annoying, we only need to talk about it to reach an understanding.
And you know what? I will always be thankful for my husband’s patience and his special ability to know exactly how someone else feels at a particular moment. I’m glad his type of crazy fits my type of crazy and that we’re both jagged around the edges exactly where we need to be. Our puzzle pieces just seem to … fit.
I love you, Jared!
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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