I Don't Talk About My Chronic Pain, but That Doesn't Mean It's Gone
The Mighty recently asked people to write about a part of invisible illness no one else is aware of and why it is time to start talking about it. When you see the two Jessicas below, you see just how far I have come in my management of chronic pain. The picture on the left was taken right before I entered the Mayo Clinic in Minnesota and learned how to accept and manage pain naturally. This picture was taken about 13 years ago and is when I was at my worst. I had spent 10 years searching for a cure, trying every medication, seeing every doctor I could find, having surgeries, and finally self medicating by drinking copious amounts of alcohol in Boulder, Colorado. I no longer wanted to live and I had given up. The smile on that face is not real. I was in the worst physical and emotional pain of my life and had truly given up on myself, my dreams and my life.
Fast forward to the picture on the right to the Jessica of now. This picture was taken since my daughter was born and the smile on my face is real. I am not just surviving in this picture, I am alive. I have been practicing managing pain naturally for about thirteen years and if a picture can say a thousand words, I believe the above two images show a million words. While I was in the Pain Rehabilitation Center at the Mayo Clinic I learned many tools to manage pain naturally. I was in the program for about a month and although I was reluctant to accept chronic pain in the beginning of the program, the work and dedication I put into managing pain naturally saved my life, literally.
The hardest thing I had to come to terms with was their lesson to not talk about pain to our loved ones. The concept behind this is that the more we talk about pain, the more we think and dwell upon pain. It takes tremendous work to bring your attention and mind away from your pain and onto something else. Talking about pain is what is called a pain behavior: a pain behavior is anything that draws attention to our pain. I still struggle with two pain behaviors: over-doing it in a way to not think about pain, and rubbing my face, head or back when I start thinking about the pain. I could not imagine not being able to talk to my dad or my loved ones about the pain I was in.
The program was only a month and yes, I came out looking like a different person with a very different mindset than I had when I first entered the program. I stopped looking for a cure, I stopped taking medications, I stopped drinking, I exercised, meditated, and truly was a completely different person than the person my loved ones knew before I went to the Mayo Clinic.
However, I still had/have chronic pain. I was working on not talking about pain which was very difficult. The program taught us to tell our loved ones that we were having a “difficult day” when the pain was excruciating but not to use the word pain. I agree with this concept and I can honestly say it works for me because at the age of 34 I am continuing my success in my management of chronic pain despite never finding a cure. People have forgotten I have chronic pain and that is what I want people to remember.
The title of my website is No One Gets Flowers For Chronic Pain which of course is a metaphor. People who are as fortunate as myself to be able to accept pain and live the life they desire still want support and encouragement. Many of my readers email me and ask the same question: “How are you able to work when you have chronic pain? I could never hold down a job with this severe pain.” I want to be clear. In my first job as a social worker I worked 32 hours a week, not the average 40 most of our society works. I did not make a lot of money but I enjoyed what I did, I was able to take breaks to practice meditation/mindfulness, and I worked enough hours to receive benefits. Because of time management and being able to incorporate my tools in managing chronic pain naturally, I was able to be a great social worker.
Years later my daughter was born, and my dream of becoming a stay-at-home mom came true. For those of you who are not stay-at-home moms, let me be the one to tell you that being a stay at home mom is work. I think it is very important that our society and those of us who have chronic pain remember that no woman is ever “just a stay-at-home mom.” For those with an invisible illness such as chronic pain, the job of being a stay-at-home mother becomes that much more difficult despite its joyfulness.
Yes, now I am a stay-at-home mom and writer, but I still have chronic pain. Some days are really hard. Some days I want to tell the people I care about: “I am in so much pain. I know I have come a long way but I still cannot do everything you would like me to do because I have to practice moderation and listen to my body if I am going to continue to live in a healthy way despite pain.” I still get anxious and at times depressed because of pain. No, I do not talk about it and it happens so infrequently that I do not feel the need to.
However, I want/need people to understand that just because I look so much better on the outside and I am healthy, I still need support and understanding. There are reasons I say no to doing certain things and most of the time it is because of my invisible illness. There are days I am not the energetic, happy, laughing Jessica because I am having a “difficult day.” Yes, it has been years upon years that I left the Mayo Clinic and have been managing pain naturally and no longer allow pain to interfere with my joy, but the pain is still there.
Sometimes when one stops talking about something, they feel forgotten. There is a reason chronic pain is called chronic: It never goes away. When someone loses a loved one they are given flowers, cards, food, and everyone is busy planning a ceremony and for days people comfort the person who has faced a loss. However, following the funeral and a couple weeks of mourning, for many it is as if the death never occurred. There are no more flowers, cards or dinners being made. However, the feelings of loss the person feels are still there and probably worse than they were when he or she lost their loved one. Now this person has not only lost someone they love whom they will never see again (so some believe) but have also lost the support and love that was given to them for the weeks following their loved one’s death. I think the correlation to this and to chronic pain are extremely similar.
I want and I know those of you who rarely talk about pain and are managing it well want to be remembered and supported. We still have chronic pain, whether or not we talk about it. We need love, support and encouragement from those we love. Most of all, we want to be remembered.
Follow this journey on No One Gets Flowers for Chronic Pain.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.