The above website is an article written by a facial nerve pain patient named Carol Levy, a columnist. She called her article : A Pained Life: Painaholism *(June 12, 2013).
You may read the article about what Carol Levy calls “Painaholism”, if you should choose to do so. I’ve put the website at the top of this blog post. After reading that article, *(usually I moderate all posts prior to them going up in my support group for pain, website. I feel responsible for 650 people in my support group, or more now, to make sure that they are not “bullied” or fed incorrect information also to make sure that each feels cared about as much as the others. I do care and that’s why I was not very happy when I read the above article regarding something called “Painaholism” and comparing Alchoholism with Chronic Intractable pain/nerve pain etc . I allowed it up on my group page because I thought it was good for discussions, and it most certainly was/is. Many people spoke up against it and have the same feelings that I have about calling Our RSD/CRPS chronic burning nerve pain, and others with their own forms of different kinds of nerve pain syndromes; “Painaholics”. This person compared us to “Alchoholics several times in her article. I have written my opinion about this article and I wanted to post it here for you to give it some thought. It start just below:
*************************************************************************************************** This is my “opinion” about this article and Carol’s views. First of all, everyone is entitled to their views! I believe that this idea that chronic pain can be compared to “alcoholism” is wrong and bad for those of us in chronic intractable pain day in and day out for so many years! Now I do know both sides of this …in a way..No, Ive never been an alcoholic… But my grandfathers were both alcoholics and I suffered from anorexia for most of my life until my car accident and the pain it caused, forced me to stop caring what my weight is and take Meds that would make me ill if I don’t eat. so I had to start eating and just plain STOP being afraid of food just because my parents : weighed me, punished me for my weight and poisoned me and starved me! THAT (EATING DISORDERS) can be kinda sorta “compared” more to alcoholism. Only because you start defining who you are by your weight! It’s still very different from alcoholism because you NEED FOOD TO SURVIVE & you don’t need Alcohol to live! But there are a few similarities in that it is and isn’t sort of a “choice”. When you are in the depths of an E.D.; you don’t feel like there’s a choice ;but in all reality you CAN choose to change your mind set and make yourself nourish your body!
Ok ..so what I’m trying to say is that I do not believe that pain is a choice! No matter what someone writes in their own personal opinion! My opinion is that a person who thinks they can change it by pretending it doesn’t exist , is living a lie! Maybe their pain isn’t it hasn’t been as bad as mine and many other people’s!!??? I’m not going to name off my list of all my diagnosis’ …but maybe someone with one pain and not RSD/CRPS PLUS nerve pain diseases, Polyneuropathies /Radiculopathies etc.. CAN fix themselves by changing the way they think and look at their pain! I think that’s 100% GREAT if you can get your pain to that level and you can “pretend not to be disabled anymore because you aren’t writing that down anymore!”
For me and many others in Chronic , burning, nerve pain PLUS…I CAN fix my attitude -yes!!! I think we can all do that! I can choose to talk about my pain constantly, ruin my life and everyone’s
who’s around me!! Also by doing that, I could possibly be “controlling” everyone around me with my pain… If I never do anything else, speak of anything else and never have any kind of other life except being “married” to my pain! I am doing exactly that…”controlling everyone with my pain”! But I don’t do that! I find things to make my brain continue to work and some things that make me feel good about myself, even with all of my health and pain issues. I run 2 support groups, I’m a mentor for “newbies” with RSD/CRPS through RSDHOPE.org…Im a “chemo-angel” and I have a CAUSE called “R.A.S.E. for Invisible Diseases”!!
I do my best to only complain when I feel that I must and I try hard not to let it stop me from spending some good, quality time with my husband and my daughter!! Many of my friends who have pain similar to mine do a lot of things in their lives still! They don’t “choose ” pain, none of have done this, that I’m aware of?? My pain is “disabling” and that’s not a “bad word” or “Taboo”;
some word that I need to fear ??!!! It took some of my “Abilities” away… From me… My abilities to do so many of the physical things I could once …at one time …that I could do easily with excitement and fun!! Now I’m “unable” …also “disabled” from doing some or most of those things! Now, I have gotten special appliances including: motorized scooter, walker, wheelchair, leg braces (AFO’s),cane /loftstrand crutches, hearing aids, glasses etc!!! I got these things to enable me to do some things sometimes and still not a whole lot on other days!!!
So you see, I’m not standing up in front of my pain group and saying aloud ” my name is Suzanne and I’m a “pain-aholic”!!! Because that would mean that I am choosing to be in pain over having a fulfilling life! But you see, I have my mind (except for the MTBI & short term memory issues from Cerebullar damage”!) and I don’t hurt other people because I did something to make myself be “out of my mind” for most of the hours in my days!! An Alcoholic can & usually does hurt physically, mentally and emotionally, the people closest to them!! The only thing the two things have in common is that they are truly both “diseases”!!! But they are as different as Anorexia and Cancer! We in pain, speaking for myself and the few people who I know truly very well, who are in similar amounts of pain as I am….we don’t choose to hurt anyone or ourselves, we hate writing “disabled” on any forms etc… We hate saying “I will try to go shopping or on a trip with you…but I’ll let you know on that day, if I’m able to go or not or for how long I’ll be able to walk on any given day! Alcoholics are not anything like us “spoonies” (if you haven’t read the “spoon theory by Christine Miserandino.; then you need to do so!)… We can do only what we can do on any given day and each day can be very different! Lastly from experience, I know how abusive many Alcoholics can be!!! I’ve only really ever met one or two abusers who were in pain and their pain wasn’t the reason for them being abusive…their mental illness was the reason or they were just plain “ABUSIVE” for no reason!
I’m not a “Painaholic” I DON’T GET A” HIGH” OR PLEASURE from my own pain OR FROM INFLICTING PAIN ON THOSE WHOM I LOVE!!
**This is an informational website to find out more about RSD/CRPS….Lastly, I have and moderate three (3) support groups for chronic pain persons: the first and longest standing support group is on Facebook groups at: https://www.facebook.com/groups/Invisible.diseases/
…it is a closed private group and your membership must be approved first. This way we keep out any bullying, spamming and other negatives, if at all possible….. the second group is on Google+ and it is called “Be Aware & Care” , it is just getting started and we only have 67 people so far in this open and public group. Lastly, I initiated and set up a CAUSE on Facebook and it’s called “R.A.S.E. for Invisible Diseases” (http://www.causes.com/invisiblediseases) ..and we send out notices several times per year and many times in November for RSD /CRPS month of awareness. WE send out notices to raise awareness of this horribly painful Neurological disease. We do it to raise awareness, donations, education and support! Any donations by-pass people, by pass me, they go directly to RSDHOPE.ORG …The website has a very large amount of information for RSD/CRPS. You can locate that website above right near the RSD/CRPS awareness ribbon picture…thank you for your time!