Over my many years of coping with chronic pain I have changed in how I want my friends and family to “help” me with my struggles. In the beginning (high school) I wanted someone to just hug me and say: “I cannot understand what you are going through but I believe you and I am here for you if you ever need to talk.” Late teens and early twenties are a difficult time for people to understand emathy and compassion. I, myself was extremely self involved during my late teens and early twenties. I do not know many people (especially girls) at that age who are not self involved.
During the times I was going to every specialist possible to find the cure for my chronic pain and enduring awful, outpatient surgeries I just wanted to be held. I just wanted someone to hug me and let me cry.
After my time at the Mayo Clinic, Pain Rehab Center, my approach to my chronic pain changed dramatically. I learned how to manage my pain without doctor appointments, surgeries, or pain medications. I learned that I needed to exercise, do meditations, not over do things, and many other lessons I will continue to share on my blog. Looking back, if a friend or family member wanted to help me I would have loved for someone I cared for to motivate me to meditate, exercise, and eat healthy. The hardest part about leaving the Pain Rehab Program is that for weeks you are surrounded by people with chronic pain who spend their days with you doing exercises, doing deep belly breathing, doing yoga and meditation etc. You are with people who are in a group, motivating one another on a daily basis. Once you leave the program it is up to you to continue to practice all of these principles on your own. I, personally did not need motivation to exercise as I loved it. However, I needed a ton of motivation to practice meditation. I wish I had asked for someone to join me when I first left the Pain Center.
At this point in my life I do not want to talk about pain and will not do so. I have learned that talking about my pain to my friends and family only increases my pain. If I talk about pain, I end up thinking about pain, when I start thinking about pain I find it almost impossible to stop. It is a downward spiral. This can be very frustrating for friends and families because they want to know how you are feeling and coping and their hearts are in the right place. If your loved one is at a place as I am now all they want is for you to acknowledge that you are proud of them and know that they are in pain but are unable to talk about it. If your loved one does not want to exercise, or practice healthy ways of coping with chronic pain don’t be pushy and condescending but ask them to do something healthy with you. If they refuse, try again another day. In the end it is up to us as people with chronic pain to make our own choices. I can be stubborn like no other and it has taken me many years (with many fails) to become as disciplined as I am now. There are a lot of times that I have to say no to things/events people ask me to do with them just because I know my body/mind and know what is too much for me. Friends/family get frustrated with me but I work hard at not feeling guilty for saying no to certain things people ask me to do. I have to put my health first. If someone asks me what is wrong because I am quiet and not my energetic, fun self I have learned to say: “I’m just having a difficult day.” AKA I am having a real hard time dealing with this damn chronic pain today and it has nothing to do with you. It is a lot more beneficial for me and in turn my loved ones then saying “I’m in pain. Sorry.”
The WORST thing to ever say to a person with chronic pain or an invisible illness is: “But you look so good and healthy.” I have never been in a physical fight in my life but that sentence has got me close to throwing it down haha. Please , if you have any questions regarding chronic pain….ask me. I will be totally honest with you and this blog is intended to help anyone with chronic pain, or anyone who knows someone with chronic pain.