3 Ways Fear and Anxiety Shaped How I Cope
Growing up with a chronic illness like cystic fibrosis has always bordered on terrifying, which is something I hadn’t quite come to terms with until recently. How does a kid respond to concepts of mortality and suffering, anyway?
Parents of kids with CF often try to shield their children from these realities as best as they can, but from my experience, I was always very aware of the daunting realities that could come from cystic fibrosis, even if I couldn’t quite contextualize them.
I say I was aware of them because I had been exposed to horrendous experiences from a young age. However, from those experiences, unbeknownst to me, I started developing my coping mechanisms and my ability to self-advocate. Coping mechanisms are strange, and I don’t think they should be labeled as good or bad, but the underlying emotion that dictates the behavior should be unraveled. My coping mechanisms would label me as a star patient and would provide me a foundation on which to improve my health.
My coping mechanisms were largely founded on two emotions: fear and anxiety. And that anxiety manifested in a need for control in three important spaces in my care:
Compliance with my treatments
For me, this had been a tangible way to manipulate or try to manipulate my lung health. In my mind, compliance was a way to put off sickness or slow down the deterioration of my lungs. However, I was also aware of how inevitable sickness is, so compliance alongside exercise could support my body and create a foundation. When I did get sick, I could use my body as its own fallback, and there was a satisfying safety in knowing I did all I could.
Of course, while deep fear has driven me to stay uber-compliant, I also am a conundrum, and I’ve found myself skipping treatments. That often renders me to be full of guilt, which is a topic I should flesh out with my therapist.
Education
My disease is intimidating. Heck, even the name cys-tic fi-bro-sis sounds scary. When I was younger I didn’t have control of how scary CF could be (I still don’t have that control), but I could try to understand the complexity of my disease.
Understanding it meant being able to visualize what was unfolding in my lungs, why it was happening, and using this information to grasp what my medications, nebulizers, and treatments were trying to do. Understanding cystic fibrosis at the physical level was, and is, important to me, and now that I’m a little older, I’m learning to understand its influence on my state of mind and sense of self, which is a totally different column for a different day.
What I didn’t realize I was doing as a child, teenager, and young adult was simply developing not only my coping mechanisms, but also my voice and my ability to self-advocate, which is where my care team comes into play as both a way to ease my anxieties and to collaborate with me as an advocate.
Forming relationships with my care providers
From when I was diagnosed at 9 years old, I saw my care providers as my strongest allies against, well, the natural course of a genetic mutation.
Having cystic fibrosis, it’s not unusual to develop strong, family-like relationships with your doctors, nurses, respiratory therapists, and anyone who may work in a hospital. And for me, it was particularly important to cultivate these relationships, because I was afraid and I knew these people could not only soothe my anxieties, but also help me best live with my disease.
Through my relationships with them, I learned how to express my anxieties, overcome shame in asking questions, and ultimately best advocate for myself. I’ve had the luck (maybe?) in having doctors who genuinely want the best for me, and because of their support, I’ve found my ability to advocate for myself, especially when doctors haven’t listened to me.
In a lot of ways, what I’ve described are strategies in combating illness and disease, or perhaps crummy life circumstances. I call them coping mechanisms largely because they were bred from my own fear and anxiety that cystic fibrosis provoked. In this column, I have been using past tense, because while I still am very compliant, that element of anxiety isn’t quite as profound as when I was younger.
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Note: Cystic Fibrosis 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 other 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
JPaul
I hear what you are saying, but personally, I think the best coping mechanism is Trust. Not in anything specific (than it would be a believe, they tend to go wrong and cost a lot of energy). But trust in general. Trust in Life as such. No matter how it presents itself to you at any time. Trust is the only antidote to fear. Knowing, control, behaviour, they will all fail at a certain moment because you can't know everything, there is no real control over anything and your behaviour will not cover every emergency, nor will your doctor's have all the right answers at any time. They are techniques, and techniques inevitably go wrong and fail. But Trust will never fail. Just let life take care of itself. Of course, there are possible actions to take, possible things to avoid. You don't have to be passive, sometimes action is called for. But if done from a baseline of trust, in stead of anxiety or fear, quality of life will be much better. There will be an underlying peace in what you do or avoid. The outcome will always be better. Work on that Trust, it will be your best investment.
JPaul
I hear what you say, and your strategies are not wrong. It's important to take care of your health as best as possible, in order to do that you will have to inform yourself the best way you can, and you will have to (what I call) puppytrain your healthcare providers to let them know what you want.
Now, having said this, fear and anxiety are a different thing all together. And the strategies will not take care of those, nor will control do.
Because no matter what you know, how well you manage your health, how good your doctors are, eventually these strategies will fail, one by one or all at the same time. And you know that. So the fear and the anxiety is never far away if you go about your health situation like this.
For me, the only thing that really works is accepting that in the end, there is no control. Nothing is under control, and that's fine. You don't know everything, and that's fine. You can't manage everything, and that's fine too. Because there is this great and only antidote for fear and anxiety, called: trust.
Not trust in something specific (like: I trust that this antibiotic will work), because that would be more like a believe or a hope and those tend to fail eventually and cost a lot of energy maintaining them while they last. I mean: Trust in general, trust in Life itself. Let life take care of itself. It will turn out fine anyway, no matter what happens. Life knows best. It even knows when to die. It is much bigger than you. It does not mean that you give up or that you can't or shouldn't take action or avoid things sometimes, not at all. But if you do this from a baseline of Trust and acceptance, it will make your life much more peaceful. And it will make the outcome of any action or non-action better, because it will not be a fight, but a going with the flow. Invest in trusting, it will really improve life in all aspects.