This original post was written by Tracy on her blog titled “Oh What A Pain In The….” which can be found here. I encourage you to visit her blog! I wanted to join her in her effort to bring some awareness to individuals with Chronic Pain. I know most of us don’t want sympathy or pity, just to have someone try to understand what we go through at times. She has a list a questions at the bottom of this post where you will see I have inserted my own personal answers. Please take a moment to read in honor of someone you might know that lives with chronic pain.
September is Chronic Pain Awareness Month! As a therapist/social worker, and a someone who lives with chronic pain, September is my new favorite month. Some of us (and/or our loved ones) are dealing with Chronic Pain and/or disability on a daily basis. Sadly, our pain does not end come October 1.
I had an idea to get the readers and other bloggers involved to create awareness. I would like other readers and bloggers to share this post (if you don’t mind) and, if you would like your story included, please copy and paste the questions below and then answer them in the comments section. Please, if you do share this, try to get everyone to come back to this page so all the comments will be here. My idea is to make this into one HUGE comments section on what we LIVE WITH on a daily basis, how we cope and what makes us special! Also, please feel free to include this Chronic Pain Awareness logo on your blog, Facebook page, etc., to let others know that you support Chronic Pain Awareness.
My hope is that by sharing our personal stories, we can create awareness of what it is actually like to live with Chronic Pain and share with each other how best to cope with it! I did this last year on my personal blog and it worked out pretty well because it helped others learn more about each other, their conditions and how they coped. It also helps people who do not live with chronic pain have a better understanding of what we do go through.
Please answer any of the following questions that you would like to share with the Chronic Pain Community:
- What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)? I have fibromyalgia/chronic fatigue. I was finally diagnosed in 2010 after about 3 years of doctor visits.
- What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? ) It’s a very “out of control” feeling. I can go to bed feeling ok and wake the next day having to cancel plans that the pain prevents me from keeping. I think most people don’t understand the sadness and frustration from the way it affects even the little things like doing dishes or going for a walk. Simple things a lot of people are fortunate enough to take for granted.
- Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain? Well, I guess I ride the fence here. I do have hope that the medical community will find meds, food, supplement and lifestyle changes that will help us relieve some of the pain we live with; but I’m also trying very hard to adapt. In my own opinion, it takes away from a joy-filled life I want to be living if all I do is hope for a cure. I do hope a cure comes some day, however, in the meantime I need to work on living the best life I possibly can which means making some adaptations to my previous life.
- What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void? I miss the simple things, like being able to do the laundry whenever I want to; just regular life. I’m learning to allow the time I’m captive by the pain spur me to do other things – read, pray, enjoy a movie, sit on my porch. Quiet things that our busy lives don’t usually allow. Even nap!
- What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain? Life may be different now, different than I planned or would like it to be, but that doesn’t mean it’s going to be a bad life. It can be a great life if you let go of the script you had in your mind for the life you wanted and roll with the life you have. Focusing on others and not my own pain sometimes helps too!
- Do you feel that people view/treat you differently? How so? Yep. I’ve run across some that seem to think it’s a complete mental illness and tend to treat me like I must be a nut; which then trickles into them not giving credit to much of what I have to say in any area. Most of the people closest to me have been very understanding, helpful and loving; some that go to the other extreme at having pity (which I don’t need). I’m very fortunate to have a husband and kids that are very supportive.
- What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional) I’ve tried stretching, deep breathing, yoga, etc. I don’t tend to stick with them very long before I move on to the next thing. I guess I hope the next thing will work better. I have found that deep breathing, stretching and just sitting still in the quiet can be helpful to calm the over increased sensitization that we suffer from. And bubble baths! Hot, relaxing, soaking, bubble baths.