Welcome and I hope that together we can share our stories, helpful hints, trials and errors so we might help each other deal with and control our debilitating pain. Sometimes this is not just physical as it affects us mentally, emotionally as well as physically. There are so many of us who have pain everyday and we do not realize that our pain affects us in so many different ways plus all the people around us.
I have this little story to share with you all.
After my first back surgery and many tries to return to work which were unsuccessful. I decided to apply for CCP disability pension. After visiting my specialist and completing the many medical tortures. I received copy a letter from the pension board that my specialist sent them concerning my disability – who I might add was the doctor who told me I could never work again (hairdressing was my profession). He wrote the pension board that in the foreseeable future I might be able to go back to work a couple of hours a week and that I showed no facial signs of pain. What the heck was that statement all about? So with that information my application was denied. I called my attorney and asked him what to do? He suggested that I go to my next specialist appointment looking like I felt. Instead of making sure I got all dolled up, hair perfectly done, makeup professional applied etc. This was foreign to me as I was not only a former model I was also trained as a hairdresser and makeup artist .I decided that I would follow his suggestion though. So reluctantly for the next appointment I did just that and went like I felt. I wore low slip on shoes, a house dress that has a zipper front, no makeup and just combed my hair instead of styling it. I walked guardedly and slowly with the pain. I was embarrassed that I might run into someone I knew.
Wow! What happened next floored me. The doctor came out of his office to get his next patient and looking at me asked if anyone would mind if he helped me first as it was clear I was in need of his help desperately.
When I went to get up to go into his office he helped me into his office and put a small pillow behind my back. His comment was, “You must be in a great deal of pain to-day.”
My answer back was, ” No more to-day than any other day.”
He was somewhat taken aback by my comment. I said to him, ” It is very important to me how I look I don’t want people to feel sorry for me. I was once a model and looking like this, walking like this and others seeing me like this is not what I want.”
His reply was ” I am sorry, I have never dealt with someone who said this before. Most patients I know want sympathy.
” I asked him, ” Would you want to sit beside someone who looked like me? I would be afraid to ask them how they felt”. I left his office knowing he had a new understanding about some of the patients he was dealing with. I wondered how many others he judged in this manner and how many other doctors did the same. I left his office with the paper work to get my pension, but how sad is that. The doctor only judged me by the way I looked not by the way I told him I felt.
I hope we can help others by sharing our stories. We need to show our strengths, our weakness, be here for each other and take control of our pain. Maybe then we can educate our doctors, especially those who have never suffered a pain in their lives. Textbooks do not feel.
July 2, 2015 at 9:54 am
Chris, doctors are not the only ones who judge us. I gave up a handi cap parking sticker long before I should have simply because of judgmental looks. Invisible disabilities are judged by everyone. Like you I hate to leave home without my feminine armor, it’s important that I look as good as possible. How I dress and present myself helps me deal with the chronic pain and I hate to acknowledge my pain to other people. Makes me feel vulnerable. Great blog.
July 2, 2015 at 11:06 am
Than you Jean. I t is sad that we have to be who we are not for others. I told my dr once that the hardest thing for me to do everyday was be what others want me to be.
I feel and maybe you do as well that my pain is not up for judgement by anyone. Tank you so very much for stopping by. I have started my book Chronic Pain which is from my view point not from someone who has never suffered a day in their lives. Maybe you would like to add something as I go?
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May 28, 2015 at 5:20 pm
Chris, that must have been a terrible experience. I know people who endure chronic pain and to look at them you would never know. I try not to show mine, but when I have to limp because my leg or hip just won’t cooperate, it is rather hard to camouflage. I have been taking some supplements for a couple of months and am now experiencing less pain, so I’m hopeful that after a couple more months it will improve even more. I really think my pain is mainly from the sciatic nerve and the muscles and tendons in my hip and thigh. I don’t have sciatica any more, but the nerve is somehow involved. But it is good to be able to go for a long walk without feeling almost completely disabled for the next few hours.
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May 28, 2015 at 8:35 pm
Diane it is people like you who don’t flaunt their pain and show their strength that make this world a better place.
I pray you will get more relief from the supplements and if you want to share what they are I will share as well so they might help others.
May 28, 2015 at 8:38 pm
Chris, I will send you some info to your e-mail with some links that you can read up on them. I have just ordered another product to see how that will work. If they can help others, it would be wonderful. Of course, pain has many different sources, and if there is actual nerve damage it is much more difficult to deal with.
May 28, 2015 at 8:40 pm
May 28, 2015 at 7:06 am
I am so sorry that you had to go through that just to get the documentation you needed. I too want to look put together and nice when I leave the house, even if it is just a pain management appointment or other doctor appointment. When I carefully choose what to wear, do my hair and makeup it is like my armor against the world seeing how horrific the pain I am feeling is despite all the pain, and other symptom, medication I take daily. I am on 12 medications for my chronic pain just to stay between a 7/10-9/10 on the 0-10 pain scale. I am an average woman, I sincerely can’t imagine how difficult it was for you, considering your past jobs and skills, to leave your home without your feminine armor.
I hate that doctors judge us by how we appear and not the suffering we describe and the hoops we have to jump through to get the disability status and pension or anything else that we need because we can’t work anymore.
The statement you made to your doctor, “Would you want to sit next to someone who looked like me? I would be afraid to ask them how they felt?” It is a very powerful statement about how far we have to go man and woman alike, not just in our grooming and dress, but in our facial expressions and how we move as part of the armor we wear around others. I know before I perfected my armor I lost many friends, who couldn’t stand to see me in so much pain (I’ll leave that there since I should write a whole blog about that loss that chronic pain warriors deal with in their lives), and scared of other potential friends due to it as well. This is a very powerful truth about all chronic pain warriors and how we are judged by society in general and even worse our doctors who studied and specialized in pain, chronic pain and the treatment of such.
I look forward to learning more about you and am hopeful that we, along with other chronic pain warriors, can help and uplift each other.
Thank you for sharing your story,
Modern Day Warrior Princess
May 28, 2015 at 7:57 am
I am so pleased you visited my blog today. We my friend are kindred spirits. In my book A Hairdresser’s Diary I talk about how my chronic pain and the drunk driver who was the cause of it all changed my life forever. I have been asked by many to write my next book about chronic pain and it is in the works now.
With your permission I would like to hear from you more and use some of your stories in my book.
The loss of friends is one of the most heartbreaking things that happen to some of us. Not because others are tired of hearing us complain, because people like us keep our complaining mostly to ourselves but because they are embarrassed that they do not know how to deal with us. Just like the doctors they don’t ask.
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May 28, 2015 at 2:16 pm
I will have to read your book. I find it interesting that both of our chronic pain stems from a car accident where the other driver was impaired. I have Reflex Sympathetic Dystorphy/Complex Regional Pain Syndrome (RSD/CRPS) that was caused by nerve and physical injury when my car was t-boned 11yrs ago. Sadly my pain condition can spread and it has gone from my neck, right arm and right upper quadrant of my torso to my full body and internally, I hope your pain cannot spread. (I don’t ever try to compare pain syndromes/diagnosis and say one is worse than the other since chronic pain is debilitating no matter what caused it and the pain scale currently used is so ridiculously subjective and useless for describing chronic pain.)
I don’t mind you using any stories you read that I post. I hope to someday write a book about my life overall since it is a miracle that I survived being born, the umbilical cord was around my neck and the doctor’s didn’t know it until they saw it, and am still alive today. God has a reason for me to be on this earth because he has spared me so many times.
I truly look forward to reading your past and future posts along with your book. I am blessed to have found a kindred spirit in you as well. I am so sorry that we are both in the chronic pain club and will pray that your pain is controlled as best possible and your pain level is as low as possible.
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May 28, 2015 at 8:45 pm
Andrea thank you for sharing. I am so sad for your pain only we that suffer can truly say that. I have had over 30 surgeries and 7 car accidents. None being my fault. God has made us cross paths and for that I thank him.
May 27, 2015 at 7:15 pm
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