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Stigma
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Stigma

I've been thinking a lot lately about how sad it is that there is such a stigma attached to people with chronic pain and the medications we have to use in order to get through the day.

I have always been someone who is open and honest; what you see is what you get.  I've always lived my life the best way I can, I think with high morals and I try to do as much as I can for others.  And I've always been someone who thinks most people are like myself ... honest and forthright.

But I think I have made a big mistake in being so open about my condition and treatments.  I live in a small town and, of course, everyone knows everyone else.  When I was diagnosed with fibromyalgia over ten years ago, I only told my family and a very few close friends about it.  One reason was because I didn't want to be seen as a complainer.  The other reason was that at the time most people hadn't heard of it and a lot of people (including doctors) thought it was a garbage diagnosis ... something they told you when they couldn't figure out what was really wrong OR that it was in your head and that you were really a hypochondriac or a pscyh case.

It took me a long time to get the fibro under control but I did.  My parents and sister knew and a couple of very close friends but that's it.

With my hand(s) it was different.  People could see.  I'd be in a splint, often a cast, and then the surgeries started.  So it was pretty obvious to everyone that saw me that something was going on.  If someone asked, I was honest.  I told them I had joint replacement and as time went by and I had more surgeries, they'd ask about the outcome.

Once I developed RSD, it got a little complicated.  I didn't tell too many people about it.  No one even knows what it is.  But I have found myself now regretting how honest I've been.  

Once they started upping my medications, I had times I couldn't drive.  After I've been on a medication a while, I am usually okay driving, but when they change a medication or they increase the dose, it can take me a while until I become accustomed to the medication or dose.

I was always honest with the kids if I couldn't drive them somewhere.  I would just tell them that it wasn't okay for me to drive right now and they could wait until the side effects wore off or I could get them a ride.  And I never kept it a secret from family or friends either.

But now, apparently there are a lot of rumors going around town that I'm a drug addict.  Some of this is coming from my ex-husband and his mother.  Actually, I would say all of it is.  But we all know rumors spread like wildfire.  About a month ago my sister got in my face and in front of my dad told me I was an addict and needed rehab.  This came from information her friends told her that they had "heard from someone in town."  My former mother-in-law.

I had it out with my sister and I sent an email to her two friends telling them how disappointed I was in them for perpetuating such gossip and lies.

I have never ran out of medication or taken it other than instructed.  Usually I'm told I don't take enough.  But I find myself so hurt over this.  I have always prided myself on being a good, responsible mom.  I follow rules.  I drive the speed limit.  

I've chosen to handle all of this by not responding to it.  I know that the people that really matter, my kids, my dad, and my boyfriend know exactly what's going on with me and know what I've been through and that I'm only doing what's necessary to function.  I figure by ignoring it the rumors will go away faster.  Something more interesting will come along and I'll be forgotten (I hope.)

But it makes me so angry that our society attaches such a stigma to legitimate pain management.  My in-laws have made me out to be a lazy dope addict who isn't taking care of their kids.  And nothing could be further from the truth.  My kids always come first, often at my own expense.

I'm just wondering what other people do.  Do people know about your condition or treatment or do you keep it private?  I mean,  I wasn't shouting it from the rooftops, but if someone asked, I'd tell them.  But I feel like from now on I won't disclose this to anyone.  If they ask about things, I'll just say everything is great.

I just don't think someone with any other chronic condition would be treated that way.  I feel like chronic pain patients are so judged and looked down on.  So many people think it's laziness.  And of course, if you're on narcotics, forget it.  I feel like I'm thrown into the same category as an addict.  (Actually, it feels worse.  When my ex-husband was going through rehab (one of many,) people were much more supportive of him.)

It's to the point that I rarely socialize in town anymore.  I feel like I don't know who I can trust and who I can't.  I hate this feeling ... almost a feeling of paranoia.  Generally, I don't care what people think, but I find this difficult because it affects my kids.  My ex is always making comments (though he is court ordered not to speak badly of me in any way) to the kids about how I'm nothing but a drug addict, etc.  (Mind you he's been through 12 rehabs unsuccessfully, has a record a mile long, and was denied shared custody in our divorce (despite him trying to tell the judge I was a drug addict.)

So I guess I'm writing another rant or vent, depending on how you look at it.  But how much do you reveal to people and have you ever regretted it?
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1301089_tn?1290670171
Oh how I can relate.  I do know that there are those who think I just sit around and pop pills all day for the fun of it.  How I wish!  Most of my criticism comes from my husband.  But that's another story.  

Prior to my mother's death, she thought I was a faker.  As she lay dying and my oldest sister and I were caring for her, she told me that she now realized how bad it was for me pain wise.  But she put me through hell before that.

I don't socialize much anymore.  Occasional outings with the girls or neighborhood parties.  I never know if I"m going to feel up to going out or not.  I got tired of canceling  plans.

And Mellie, I can't believe your sister.  I marvel at your patience with her.  I'd want to slap her around a while.  My oldest sister wasn't quite sure about me for a while but after she had to go into pain management, she thoroughly understands and sympathizes.  Unfortunately she live 800 miles away.  How I wish I could move closer to her.

(((((((((((((((((((((GREAT BIG MEGAHUGS)))))))))))))))))))))))))
Sara
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Avatar_f_tn
Sara, I'm not always patient with my sister.  We've been arguing a lot lately.  She tends to give her opinion when it's not asked for and she's the kind of person that sees everything in black and white and that's it.  I blew up at her last week over the way she was talking to my son.  He definitely is a little fresh but we're working on it, but she doesn't help with her sarcasm.

She also told my daughter that the college she's going to is too expensive and she should transfer somewhere else.  I ended up blowing up at her over that.  The school is a perfect fit for my daughter.  

I do love my sister but there are times I have to really back away for a while.  I tend to not be very judgmental and I have a lot of empathy but she really has none.  And she also has very little tact.  Deep down I know she loves me and the kids but she's one of those people who believes what she believes, even if you show her proof to the contrary.

I get most of my emotional support elsewhere :)

I just wish other people, and not just my sister, would at least educate themselves before making such drastic judgments about people.
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1218318_tn?1266812201
A couple years ago I blew out my back. I had been sober in AA for many years.  When I was prescribed VicodinES my doctor knew I was in recovery. But I was in intense pain and hadn't really slept in 2 weeks from the pain. I went to my AA sponsor. He gave me encouragement and total support. But I also mentioned it at my home AA group.  Many of them judged me for it, and gossiped rather than talk to me about it.


I learned a big lesson about people who judge: They're much too busy looking at everyone else to actually take the time to look at themselves.
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Avatar_f_tn
Very true.  I guess it's much easier to take other people's inventory than your own.  It's just not my nature to be judgmental, and if I am truly worried about someone, I always approach things gently and tactfully.

I know the truth about me, my conditions and my prescription use.  And I am very, very careful with what I take.  I've never been a gossip and when other people get into it, I usually will just remove myself from the conversation.  

I have tried my hardest to ignore this and look at the source and most of the time that works for me.  But on occasion I find it still hurts, mostly because I have always put my kids first and would never do anything that would jeopardize them.  Which is why I know when it's okay for me to drive on the medication and when it's not.  If I could get by with less or no pain medication, I would.  But when I do cut it back, my quality of life stinks.  I'm irritable and snappy at the people I love the most.
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1218318_tn?1266812201
Millie, I also go to NA. At my home group we all know a woman member of our group on Norco. She takes for pain from surgery complications. Our NA text book addresses taking pain drugs. I just recently posted this in another forum in fact. It tells us: "There is no safe use of drugs for us. Our bodies don't know the difference between drugs prescribed  by a doctor, and the one's we prescribe for ourselves to get high. Getting the support of our sponsor and other members of NA can prevent us from becoming our own worse enemies. Being alone during such times would give our disease an opportunity to take over. Honest sharing can dispel our fears of a relapse."  NA's bottom line on pain meds: "in this program of total abstinence, however, we need to feel no guilt after taking the minimum amount of medication prescribed by an informed professional for extreme physical pain."

I can really identify with your feelings of guilt because, of course, i felt tremendous guilt when I started up on vicodin.My sponsor told me it's none of anybody's business in the 12-step groups what I take for legal prescriptions. But I still felt guilt, and felt I blew my many years of sobriety. Opiates ARE addicting, but for a reason. They usually have an active ingredient, like tylenol, for the pain, and the opiate part actually redirects our mind away from the pain. It also gives us energy.

We got to do what we got to do, and do it as long as we can stand it. Vicodin isn't very user friendly in the long run, with side effects, and i had to get off of it. I also got a positive reaction from 3 PT sessions and ESI shots, so I'm lucky. Our NA member on Norco will always be taking them she said. She tells all the NA judges that maybe they'll get THEIR turn to experience constant pain. None of us are immune to injury.

Keep your head up mellie. Count all the the blessings in your life, we all have them if we look for them.  -A63
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Avatar_f_tn
I am a private person in nature when it comes to my medical issues. If asked how I am, "just fine".

No one knows what medications I take except my pharmacy & doctor. I am only on thyroid medication though, but even then NO ONE knows, except hubby.

I am open with people to an extent, & my health is not one of them, that is just personal information they do not need to know.

Kind of a need to know basis, and they don't need to know.
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Avatar_f_tn
My husband knows, of course, and my kids know I take "medicine to help my neck".  It's a fine line with my 13 year old because I've heard all about the meds I take being sold on the street and I do worry that if he knew what I take and how much it was worth to someone, he might be tempted to steal and sell even one pill.  So I am honest that I take meds for pain and I have told all the kids that if they ever accidently see one on the floor not to touch it but to get me right away.  They also know to stay out of our bedroom because that's where I keep the meds that I honestly tell them could kill them.  It's also where I keep my pistol and they know both could kill them if they played with them and I haven't had a problem there.
It's funny that you mention the family thing.  I think my mother is a lot like your sister.  My mom knows I take "something like percoset", she has also told my extended family members about it in the past when she's been upset at me and made it out like I don't need the meds so that they started judging me as well.  Then I thought I was getting through to her recently when telling her about all of my struggles with the pain, she seemed to be sympathetic.  I talked to her today and she asked if I was doing better (she called over the weekend when I was too weak to answer the phone and listen to her opinions on life, the universe, and everything, so DH filled her in), I told her "I'm getting there, I'm going to be okay", she then asked me if I had a good weekend...? I have to laugh about it now because I told her honestly "No, it was awful", but she is one of those people who just can't see another person's point of view to save her life.  She has no empathy.  Everything is black and white, wrong and right, and of course, she knows it all.  I have my own issues over being raised by this woman, but I'm sure you can relate.
Anyway, other than DH, kids, and in-laws (who have CP and understand completely) I really don't bother with anyone else on a personal level.  It just takes too much of my precious energy and time to deal with ignorance.  Not worth it.
I hope things get better for you in your small town, Mellie.  I grew up in a small town in NH and I can relate.
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Liked your post! Also, my father's side is from a little NH town way up in the mountains that nobody ever heard of - Landaff(?) They date back to the early 1700's
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Thanks!  I had to look Landaff up on the map.  It's near St. Johnsbury, VT and not far from where my father lives in Barre.  It's amazing how many people I meet with NH roots.  The house I grew up in was built around 1796 as part of a Shaker community (not when I grew up there).  
Sorry to get off-topic, Mellie.  I do enjoy talking New England when I get the chance, though!
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I'm sorry about your mom.  I was always so grateful for my mom.  She was the most empathetic, loving, forgiving person I've ever known.  Even though she was an older mom and was a lot older when she had grandchildren, she raised my kids with me.  And thanked me all the time for allowing her to be such a big part of their lives.

Even with her own chronic pain issues, she was always trying to help.  I remember being pregnant with my 4th.  I had a high-risk pregnancy but we didn't know it at the time.  But I knew I felt lousy.  She was always telling me to lie down, have a rest, go out to lunch with a friend and she would watch the kids.  She'd help me tidy the house, invited us to dinner, have the kids for sleepovers, you name it.

She died in '06 and the kids and I still talk about her (we mostly smile these days but there are times we cry.)  Everyone she met loved her.  I have a friend who's mom is very, very religious.  (Mine was as well.)  But she would always tell me that from when we were kids she always wished my mom was her mom.  She had a miscarriage (after having 3 or 4 kids.)  Naturally she wasn't feeling great.  She called her mom who said, "Oh, sorry, I'm having dinner with some church friends.  When I had my miscarriage (after my 3rd,) I had to have a D&C.  After the procedure I went to my mom's. She tucked me into bed, made me tea, cried with me over my loss, sent my sister to my house to bring my laundry over, caught up on my laundry and took care of me and the kids for 2 days.  This at nearly 80.

When people tell me I'm like her, it's the best compliment I could ever get.  When I hear of people who didn't have great relationships with their moms, it just breaks my heart.  I would give anything to hear my mom's beautiful voice one more time.

Living in New England is great, though I'm not a fan of the winter.  I went for a 24-hour getaway to (I think) the Woodstock Inn and Brewery in the White Mountains.  Even though it wasn't foliage time yet, the ride up and the view was gorgeous.  Even the sky seems so close, looking at the cloud formations and the mountains was very healing for me.  We even saw a rainbow!!!  I'd like to get up that way again when the leaves turn but we'll have to see.  It can be difficult to get away with the kids.
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Avatar_f_tn
I'm very sorry that you lost your mom, Mellie, she sounds like a wonderful person.  I just want to add that even though my mom is the way she is, I know I am lucky to still have a mom around.  There are times that we get along great and things are good.  
My mom is just.. hard to describe.  She doesn't have any friends and has distanced herself from our family.  She suspects and accuses everyone in the family of lying to her and being malicious to her although everyone really tries to accomodate her.  She only likes to have my children with her when she wants to, if I need her to take them, she considers it a huge imposition.  If she doesn't talk to them for over 2 weeks on the phone or if my son doesn't answer his cell phone when she calls, she accuses me of trying to "cut her out of their life" and says my husband is ecouraging me to turn the children against her.  Even though it's really not the case and I don't speak negatively about her to my kids at all.  I've tried to tell her that most 13 year old boys are not eager to chat with Nana on the phone every other day, but she really doesn't understand that.  She says "They aren't outgrowing their Nana!", and I tell her that's not what I said or meant, but she doesn't get it.  When I was divorced she even would call up my ex and talk to him for hours so that if he ever got custody she would still be able to see the kids.  She has even threatened to help him get custody and encouraged him to take me to court when we were looking at moving to AZ for my husband's job because she just wanted the kids to stay in the state so that she can see them more often.  Then she said that the reason we were inviting DH's mother to the hospital when the baby is born is because we're afraid social services will take the baby away because I take pain meds.  I don't even know where she came up with that.  
I'm sorry, I don't mean to go on a tangent about it, but she can be such a source of stress in my life sometimes.  I do love her very much, though, and I am hoping that eventually we will be able to be closer again.  She was a single parent for a long time in my life and I was an only child, so we were very close as I was growing up.  She didn't used to be so interfering in my life and she is better than she used to be a few years ago.  I just never know when the switch will flip and she's start spouting hurtful nonsense about my family and me.
I definetly recommend going up to NH and VT, too.  We were there in Aug of 09 and Nov of 09 for two different weddings.  Definetly spent more time outside in Aug!
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356518_tn?1322267242
I can relate to you all. Last week I had a visit from the department of children and families. A complaint was made that I was an alcoholic ( I haven't had a drink in I know ten years!) and never fed or bathed my girls ( 7 and 8 now) and tat I let them roam free and just so many absurd lies! I was so angry I can't even tell you. The man who visited me that day was very kind and he seen my home was spotless and the girls were clean and well balanced. The complaint also said they were ignorant so I had him speak with each one , he said it is not necessary but to me it was!
My girls have a speech problem but they are both very smart and love to read and learn new things.
I have been racking my brain trying to figure out who would say such outrageous lies. I spoke with the manger of the department and also her supervisor trying to find out but they cant tell me of course. I was told if the person made another complaint that they would be prosecuted to the fullest extent of the law and I ill also sue them.
Everyone from DCF was great, they deemed the complaint false and they assured me they would take action if another false complaint was made.
I am one that will not even allow my girls out the door without being dressed and having their hair fixed. They are two girly girls too and love to fix their hair and dress up and shop. If they get dirty they will come in and change clothes. I am always feeding the neighborhood kids too! I had one neighbor tell me why would you stuff food down all the kids in the neighborhood and not feed your own kids!
Everyone knows I am the neighborhood Mom around here. All the kids play here eat here and they love coming here. All the mothers trust me and have never once questioned my judgment.
I have been angry and depressed the past week and a half and felt like I could not trust anyone and I finally realized that was letting the scum who lied win so I have picked myself up and moved on.
I just recently found out were being audited too!
Now that can't be coincidence. I have never been mean to anyone and can't understand where this is coming from!
I always go the extra mile to help others and this is the treatment I get. I have all my paperwork in order so the audit will be a breeze but the feeling that someone is out to get me is bothering me to no end!
My kids always always come first no matter what so this attack on me and my character is just too much. I just can not figure out why someone would be so hateful!
I will get over the whole thing but I have lost some of my faith in humanity, and I always wonder is this the person who did this.
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Sandee, I am SO sorry and mad that that happened to you!  As if you don't have enough to worry about with CP, your condition(s) and running a business.  How ridiculous.  
It happened to me as well, once, if it makes you feel better.  They dismissed it, too, but I became nearly obsessed with figuring out who would call them.  I was sort of a neighborhood Mom, too.  I always had band-aids for the kids and was around watching my own and hence, the ones that weren't being watched by their parents.  
I've never been audited, though, and I can only imagine how intruded-upon you must feel with both of those things.  
My mother has threatened to make calls on me before and I have always wondered.  Although it could have been my ex-husband or really anyone who didn't like me as well.  
I really hope it's all over as quickly and easily as possible.  I hope you find out who would do such a thing as well.  
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Avatar_m_tn
Oh my what a small world this is. I live in them ignorant small towns too. I kinda learned to go with the flow. In time I got called lazy, sorry, you name it. I didn't advertise my conditions because its private. I didn't even let my family know everything, but they kinda jump on the same bandwagon with others occasionally with the verbal assaults. I think the best mental help was finding people with similiar conditions and sharing the info with them and using it as a support system.I even share Dr visits with these folks. In time a Dr visit turns into a dinner and a movie in another town with normal people. I agree with the time to drive thing tho. You know when its a good time and not, thats not a drug abuser policy to me, thats a person who tries to function knowing their limitations. I don't think people realize the mental aspect of chronic pain patients. Its as debilitating as the physical sometimes. Depression one day, anxiety the next, missing out on everything that normal people do daily is bad enough.I wish I could say that in time it all goes away, but like you said, you believe in honesty.I'm 9 yrs into this and I lost a lot of friends, or supposedly friends.As soon as I wasn't the productive member of society, society was though with me.The bright side was, I met new people with different skills and abilities and found different ways to use what brain function and physical ability I had left. My own daughter disowned me because I lost my ability to form relationships...duhhhh. Not everyday do I wanna have a relationship..even with myself. Pain management is a full time job.Maybe if during my first month of treatment I was provided some kind of mental warning and therapy in this area also things would have been better. In my opinion, PM Drs should also have a some kind of counseling or mental therapy if its a chronic evaluation. I think what they do is wait till we fail mentally, then want to add more drugs for depression...
Good Luck in your area..you're gonna need it..
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Avatar_f_tn
Mellie,

I have very little support from my family.  They don't bother me about the medications that I take, they all just don't have time to pay attention to my illnesses in particular. Its very sad to have a small family too that doesn't care.  So, a lot of us are in the same boat.  My family does not understand why I hurt most of the time, even though my sister has feet issues and wakes up everyday in agony.  So, I tell my dad when I'm in the hospital but a lot of times I don't mention it to my brother because he doesn't come to visit.  My sister is very unpredictable and very unstable so I try not to say anything to them.  I did have a person at my work start some pretty horrible rumors about me and the illness.  I'm so glad I have my med help support group.  In the time I've been here, I've only had one person that I can think of be rude to me and that was tonight on a personal email that I got and has been taken care of.  Thank you all for caring about everyone.  We need to be each other support group!  
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Avatar_f_tn
Sorry that all of you have these experiences but good to know I'm not alone.  It just astounds me how people behave.  I've always been one to try to help if I know someone isn't well and i having a flare-up.  Never would I gossip about anyone.  I find it awful what some people are capable of.
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Avatar_f_tn
For those who have difficulty with family members thinking they are "addicts."

There are many online publications that point out the difference between dependency and addiction with prescription drugs.  We all become dependent, in that we must take them or we have nasty side effects.  However, that is not addiction.

The American Pain Society defines them thus:

Addiction is a primary, chronic, neurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

Physical dependence is a state of adaptation that is manifested by a drug-class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist (7).

So anyway, rather than turn it into a heated issue, just inform them that they are getting their definitions wrong.  We who use opiates long-term are DEPENDENT.  The word ADDICTION requires the user to misuse the drugs, use them despite harm, crave the drug, etc.  That is not us, we take it because we have to take it to function.

Hope this helps!
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