There are so many struggles that come with living life with a chronic illness. For me, my particular chronic illness is POTS (Postural Orthostatic Tachycardia Syndrome), a dysautonima condition. This is an invisible illness, meaning that people don’t actually see that there is something wrong with me. I’ve been diagnosed with it since 2003, so I’ve had a lot of years to figure out how I need to manage myself and my symptoms around me… but that doesn’t mean it’s easy.
One of the things that I struggle with from time to time, and definitely hear from others with chronic illnesses as well, is that it feels that my body has betrayed me. It’s not an unreasonable feeling to have, right? No matter what I do I have moments where I can barely stand up. No matter how kind I am to my body, how much I breathe through pain, there are moments where it feels overwhelmingly painful to even just lay on the couch. There are times each day that I am really dizzy, where it feels like sharp stabbing pain when I eat. I get injured while exercising fairly easy. And on and on. I can do my part, and yet it feels that my body betrays me time and time again. Or at least sometimes it feels that way.
So, if you feel that way too, I want you to know that it is normal to feel this way.
While I don’t beat myself up for the moments I feel that way, I don’t let myself stay there for very long, because I simply can’t sink too deep into it… because it has consistently been my reality, and I want to continue to live meaningfully in the face of my illness. So here are a few of the things I do when I start feeling like my body has betrayed me:
I give myself permission to grieve: It’s not helpful to feel shame for our emotions, and it is healthy to allow our self to experience normal emotions. So, I give myself a bit of time to be angry or to cry as needed. And I express love and self-compassion to that part of me that feels sad or grieved or broken.
Instead of hating my body, I try to focus on the way that my body serves me:I wrote a post a few years ago entitled “Dear Body… thank you” and in it explore a little bit about developing gratitude for your body. On the days I can barely walk without pain, I try to go inside myself and focus on the narrative of what my body is doing. I’m thankful that I can brush my teeth, that my feet can carry me forward one step at a time (or, for the times I can barely walk, to crawl), that my body can breathe on it’s own, etc. The fact is that, even though my body doesn’t operate optimally, there are still so many miraculous things about it, and I want to honor my body for those things too. This allows me to hold the positive and the negative together, without having to deny that one of them is true.
On days that my thoughts about myself and my body in light of my illness get a bit more negative, I may focus on the thought record: This post explains a bit more about the Thought Record and the ways that it is helpful for so many different experiences in life, including a chronic illness.
I breathe and “get back into myself”. One thing I don’t want to do is try to “separate me from myself”. So, I sit on the floor and take deep breaths, or do gentle stretches, or do yoga, and focus on creating a safe place inside my body. It’s so important that we know that we can give ourselves a space of safety. This also helps us to avoid fight-or-flight, because pain is often viewed by our body as a threat. The practice of creating a “safe and relaxed body”helps us to be in a more relaxed place where we can feel pain and avoid fight-or-flight.
This last step has been hugely impactful on my life, especially the last two years or so. It’s been so helpful to recognize when I’m kicking into my sympathetic nervous system (the flight-or-flight system), and be able to do things that help kick me back into parasympathetic nervous system. Yes, this doesn’t take the pain away, but it helps keep my brain engaged in it so I can handle the pain in the best way possible.
I slow down and take care: I put on compression sleeves, use a heating pad or ice packs, take an epsom salt bath, foam roll, dig knots out of my back with tennis balls, use biofreeze or peppermint essential oil, drink tea, etc… Things that help my body to relax a bit. This helps with pain and allows me to experience some self-compassion. I try to reinforce that I am giving myself these things because I care about myself and my body is worthy of being cared for.
These are, in part, why I think counseling is so beneficial for people who live with a chronic illness. It gives us space to verbalize things and teaches us skills that help us to manage pain, love our bodies, and get connected in with ourselves again.
Keep fighting, friends. I know it’s hard to live with a chronic illness and I know the journey feels long. Know that you aren’t alone in it.
Disclaimer: This post is not meant to take the place of a therapist or doctor. If you are experiencing anxiety or depression, please talk to your doctor or a local counselor. If you are experiencing suicidal thoughts or have a plan, please call 911, go to the hospital, or call your doctor or therapist.