My therapist said I could teach the class in dealing with chronic pain. That is a compliment and far from anything to be embarrassed about. One of the best choices I ever made when I was told I had cancer a second time, this time in the breast, was to acquire a therapist to hold space for me. I hope that by sharing this with others, that they will be empowered not let fear keep them from getting help. If you or someone you love is in need of help, please reach out. The more we talk about brain health, the better a society we will become.
Thinking back, I remember thinking that it wouldn’t be forever. Having a therapist was to be just for a year or so while in treatment. I was embarrassed and didn’t want anyone to know. I hid my secret, or so I thought, from others, but we have a way of carrying our sorrows and pain in ways that others can see and feel. I didn’t understand that back then. I wasn’t truly hiding anything.
I thought that I could handle anything. I thought that I handled my place in this world, but I didn’t. Life handled me. Growing up with abuse and abandonment. Not knowing what it was like to not be “her left behind baby” was soul-crushing. As a child I would walk down the middle of the street hoping a car would hit me. I had no idea just how much of my daily life had been dictated by those events and more. I had to unlearn some things and learn more about what it meant to be just Jenny. Who would I have been without the weight of it all?
When I started with my therapist, she had this thing she would do, and I thought it was the foo-foo-ist crap I had ever seen. I was polite, but seriously, she wanted me to “notice” what is wrong, as she raised her hand to the side of her face and then pushed it behind her while saying, “and let it go.” Honestly, I think I wanted to get up and walk out. “What was this crap she was talking about?” I thought to myself. She would add that I needed to accept there was a lot more than I was willing to speak of that set my life on the path it was on. I had to accept that I have CPTSD (Complex Post Traumatic Stress Disorder), and that it does not define me. That I was facing life-changing events and choices, and none of it would be easy. I needed to give myself permission to treat my whole being. Mind, body, and soul.
CPTSD is not the same as PTSD (Post Traumatic Stress Disorder); each one has its own cause and effect. With PTSD, the reaction is to an event that scares the mind in a way that cannot be wished away, and needs proper treatment. It actually alters the way the brain works, and can make even a simple task appear life-threatening. CPTSD is a nasty animal that needs treatment. A brain injury that occurs in children, CPTSD occurs when abuse continues over long periods of time. That abuse causes the brain to develop differently from someone raised without physical, emotional, or sexual abuse. As the months and years go by, the child learns to protect themselves by trying to please everyone. They will say they are sorry for everything, even if it was something that happened when they were not around.
The mind’s protective mechanism of “fight, flight, or freeze” doesn’t develop normally. It becomes trained to work harder or be “on” all the time. Working harder also means there is less energy to go around and less available to regulate emotion in the brain. Self-value, self-image, and social relationships become dark and full of self-described negatives. Being alive is seen, for some of us, as damaging the world with our very existence. “What if we didn’t exist? The world would be a better place,” was a daily thought. Those whom I loved, I believed would have better lives unburdened by my existence. I felt that way toward everyone in my life. I carried that with me into my marriage. I allowed myself to be less than my ex-husband.
CPTSD is an injury that I have, but it is also an injury that I have learned to have coping skills and healthy outlets for. Now I use that to help me with my pain. Dealing with pain takes mental skills, just as dealing with a brain injury does. You can’t just throw a pill at it and expect it to be controlled. Noticing the things that do cause stress, anxiety, and other effects of chronic pain is the most important first step. It’s about taking control and giving yourself permission to matter. Most importantly, it’s about recognizing and accepting the pain as real.
We have now worked on my skills for well over six years. The learning never ends. I have heard it said that who I am today is not who I will be tomorrow. If I am doing my job right, I will strive to be a better human tomorrow than I was today. I’m allowed to still mess up, but never am I seen as a failure. It’s taken years of work to be able to say that and mean it. The strength I gain from that one simple thing is life altering.
I notice that things actually work. It works by acknowledging that there is an issue to begin with, to no longer pretend that it is not happening. When something is upsetting, I tell my doctors flat out. I will say to them, “this sucks,” and the response is, “you’re allowed to say this sucks.” We will learn and move forward. This is part of the discussion I had with my primary care provider, about my recent skin biopsy showing small fiber neuropathy. Another incurable circumstance to deal with, and a heavy load to add to an already damaged mind and body. Strengthening my own self-worth has given me tools to deal with the pressure, and to not let it overwhelm me. I stay in control and I matter.
The greatest gift my therapist has given me is the help to find the path on my own to a better me. I don’t have magic or special pills. I have a good guide who is not biased, and has a much clearer view to offer me than my emotionally personal view. I have a good solid trauma-trained therapist, and she holds space for me to cry over my medical conditions, and to hash out the plan of care that makes me feel in control of my health. When you are chronically ill, you really need to at least listen to the advice before you try to shrug it off, as I tried at first with “noticing” the things that are hard. I can push it to the side and deal with the moment in front of me, knowing I will get back to it. However, it will not define me or clutter up my mind making it hard to deal with the task at hand. I’ve learned to be gentle with myself and others.
It’s funny, now there are times when I feel strong and step up to deal with something. I will put my hand up next to my face, look at it, and notice it. I let my hand slowly start to move past my head and look straight at it. I pull my hand back and say out loud, “oh, I noticed you, and heck no, I am not letting you go. Get back here so we can deal with this.” Then I have the courage to strive to do just that in that moment. I’m allowed to pick the time and place that occurs.
Sometimes it’s just following the “three second rule.” I don’t mean eating food off the floor. There are moments when getting out of the chair to attempt something seems nearly impossible. My body feels heavier. I start to feel tight, and at times stressed, and the pain makes it hard to think straight. There is that urge to hide under a blanket and not come out until it’s too late or someone else gets to it. I count in my head now, “one, two, three,” and then I get up and start moving. Once I start doing what I was trying to avoid, I find that I can get things done. It might take me all day, but that’s fine. No one is going to fire me for trying to pick up around the house, or trying to boil some eggs. My time is my own. I might have to sit down a dozen times, but I will get it done.
It doesn’t matter if it is working on a painting, or spending four hours just getting dressed and making myself happy with my own appearance, but getting that accomplished feels amazing. Illness has caused weight gain, and well, I have curves. I have actually never weighed as much as I do now, not even when I was pregnant. You know what? I have also never looked sexier than I do now. I don’t say that for you to look and make a judgment. It doesn’t matter what you think about that issue. It only matters what I see in the mirror. I smile and say, “you look nice” or “hey there, sexy in the mirror.” I carry myself in that strength, and you know what? I have never gotten more compliments in my life. If you believe you look good, then the world sees that and responds. It’s not vanity. It is true self-acceptance. I noticed how I felt, and how much of it came from the negative and dark talk of narcissistic people I surrounded myself with at one time. The “yes” folks who were around me, but not to be with me
Give yourself permission to be happy. Laugh at everything you can every single day. That is my secret to surviving breast cancer, lymphedema, endometriosis, SFN. CRPS, and the long list of things that went wrong in this body, in large part due to genetics. I gave myself permission to not blame myself for being born “wrong,” but to accept who I am, and what I can do. The good works in the legislature, and art I can offer to anyone who wishes to see it and smile. I don’t look for others to approve of me. I love them to join me in a dance at my favorite pretzel stop. I love me just the way I am, and with my skills and some good old fashion box breathing perhaps I will hit my goal of living to be 116.