The Stigma Of Chronic Pain

I have suffered the stygma of my CP, saddly from those I loved, and a doctor I was "required" to see, given at the time my medical case was being handled by Workman's Comp.

Before I was injured I'd been with a man for 3 years. We'd been through good times and bad. In July of '07 we both lost our jobs, and as a result, our apartment. We moved in with my folks on the condition we were just there to get back on our feet and get our own place again. By October '07 I was injured. As time stretched on, my partner's support begin to waiver. This was a man I loved regardless all the things in his past he hid from me. He had massive debt; I worked with him to get it paid off. He had court ordered child support I was unaware of till the day they showed up on our doorstep to take him to jail; I bailed him out. I was always willing to forgive him, to work through the bad times. For better or for worse, they say. Time stretched on, I was still hurting, no one knew why. He was working, I was not; as a result things were going no where.

At this same time I was sent from doctor to doctor, specialist to specialist. No one knew what was wrong with me. I met compassionate doctor's that wracked their knowledge trying to figure out what was wrong and heal me. I also met one who left a lasting impression on me, and also got my workman's comp case dismissed. When asked for perscriptions he didn't want to write them. His final words that were a blow to me emotionally were, "I can't find anything wrong with you, so obviously your fine."

I guess my partner agreed with his sentiment as whenever we fought he flung my pain at me as a weapon. He called me a hypocondriac, said I was faking it, that I was being lazy, that I didn't want to get a job because I liked living with my family. Eventually the relationship ended without notice. He tucked my son into bed, said I love you, good night, and then an hour later packed up his stuff and left. A week later I learned he'd been involved with one of his coworker's, and had been for some time. We'd been engaged for two years. A month after he left me, I finally had a diagnosis (11/10), but it didn't matter; a month later he was married to his new girlfriend.

I tried to put it behind me, chalk it up to more of his lies and his past, that not everyone was like him. And I met a man I felt guinely did care about me and my son. I was wrong. I had explained to him in detail about my condition. What it meant, how it affected me, how I had to fight the pain and use my arm; I couldn't give in and baby it. As time went on though it was clear he didn't understand. I was being a baby, I needed to suck it up. My medication was messing with my emotions so I just needed to stop taking my pain meds, period. I also needed to stop doing anything that caused me pain ... it didn't matter if it was part of my physical therapy or if it made me happy when I created something, all of it just needed to stop. Then the summer heat started and my arm would get swollen and tender to the point where he couldn't touch me. He tried one night, tried to just put his arm over me while I slept, and the pain hurt so bad I woke up screaming in shock and pain "Don't touch me!!" I broke into tears instantly and apologized ... he chose to yell at me instead. I was hurt and felt betrayed, "You can't think I like this, you can't think this is by choice! I didn't want this, I didn't ask for this. I tried to explain all of this to you. This hurts me just as much. Don't you realize there's nothing more that I'd like then to be held, especially since I hurt?!" but it didn't matter. I was told in no uncertain terms, and very coldly that my pain got in the way of his happiness. And before I knew it, that was that.

I get the looks, we all know it, that stare of "are you just lazy?!" or "what's your problem" or "to good to get dirty" or "what am I, your slave?!" when I ask for help. I don't look disabled, I don't look like I'm hurting. No one sees me curled in a ball crying my eyes out, and only my family sees the tears of frustration. No one realizes how much of my life I've lost, how much I've had to modify, but they judge me anyway. When I ask them kindly to stack my hay, and explain why, and even offer to tip, they still give me dirty looks like I'm just being lazy, or some barn brat. It hurts, it hurts as much as the physical pain.

How do I cope with it? I just acknowledge that it is what it is. People are selfish and narrow minded, and as even one person has admitted here most people have no clue as to what people with CP go through until it affects them, or it affects someone close that they love. They see us as big babies, that the pains no big deal, that don't we take our medicine and it just goes away? I've not lost a limb, nor am I in a wheel chair, or grossly deformed, so how can it be that bad? It's just pain after all.

I wish there was a way to let people walk in my shoes, to spend a day with my pain, and then honestly see just how much of a big baby, a lazy slacker, a fake, a whiner, or a phoney I really am.

Thank you, Dani, for once again being willing to bring up a "sore" subject for all of us in hope that we'll all be able to deal with it a bit easier. *hug* You really are an amazing woman, and I feel lucky to know you.

Thank You Chutz for this reply to Rhaevin!

Wonderfully put! I hope all members will have a chance to read this wonderful reply.


SE

Wow Chutz What a wonderful reply to Rhavin (sp? sorry). That really touched my heart. I've been looked at like people can't believe I'm in a wheelchair because they can't see anything wrong with me. I only use it when we go out because I can't walk very far and we don't have a car. It does hurt. I'm overweight, and Jerome and I were walking down the sidewalk one day and this person drove by and said "What are you doin' kissing that fat b*** . That hurt so much. People that don't have cp just don't understand and I wish they could walk in our shoes for one day so they could understand and wouldn't make fun of us, or put us down.

I hope everyone is having a low pain day. I love you all my friends. *hugs* to Rhaevin.

love and hugs
Loretta

3 years ago I was told, "It's just pain. Take some Tylenol."

Yes, true. It was just pain. There was a span of about 2 months before my first x ray. I didn’t know what was going on, but by the time it became unbearable I had already been taking the maximum amount of Ibuprophen daily for a few months. No one would listen. My mother in law mocked me. My husband laughed at me. My father in law belittled me. My friends told me to tuffin up. My husbands friends suggest I was just depressed and lonely. My online friends ignored and dodged me. Then the urgent care doc treated me like a young girl and loaded me up with medications that did nothing. What was I supposed to do?

I pestered for doctor appointment and I got one. Only to be sent to another "pain management doctor" who treated me exactly like the Urgent care doctor did. What was I supposed to do? The army of nurses to get into each doctor all gave me hard looks and mocking "advise". I just wanted something, anything! A picture of some kind! Anyone please show me what was happening to me!!!

Then finally, I got a simple x-ray. I would come to find out later that an x-ray is only a few hundred dollars. There it is, clear as day. One single curvature. At first it was small and mild. At first, no one believed I was in that much pain from such a small singular curvature. I had no "out word signs" of my "back problem". I was still treated with careless disregard. The only ones who seemed to be concerned were my doctors. You see I have seen the same primary care for many years. He needed x-rays done a very very long time ago. There was no curvature then. Still.. socially I was treated the same as I was before the x-ray.

I remember how tired I was the day after my first full epidural series. It was so hard to care for the girls. I was in so much pain. My husband and his friends went off to a concert. I told him I could barley move. I told him I was in pain. He didn’t listen. My mother in law called that night, and reminded me that I was young after all and overreacting. Even my father in law called the next day and said that if I could do whatever it is that needs to be done around the house, and be indifferent about it.. that would great. I was crushed. I have never been one to shrink from my responsibilities, ever. I had always been and still am very proud of my responsibilities. When I turned to my friends, feeling like I couldn’t possibly go any lower than I already was... I was told to just go run around the block each day. Another friend told me that she had sciatica and that was what real pain was. All of this, because I had no out word signs I was sick. No obvious problem that someone could point to and say "I see!". All because of the "stigma" associated with young people and "chronic pain". Despite having x-rays that showed I had rotation on the vertical axis. I even had one friend tell me that everyone has back problems, I was the only one acting like the pain was killing me....

So I withdrew from everyone. Besides, that pain was spreading anyway. It was more and more difficult to do simple daily tasks. By the time it was time for my follow-up with my spine specialist he looked at me with shock. Then sent me immediately to x-ray. The curvature had increased in size and degree. 20 degree increase in only 4 months time. I knew visually I was starting to look different in the mirror. Who could I tell? No one wanted to talk to me and truth be told I didn’t want to talk to anyone else either. Why waste the breath? I was only going to be belittled. Little by little as my doctors concerns were more urgent... My husband began to believe me. He said he was sorry. He tried hard to reach who I was inside, who I had become... it was no use. I had barricaded myself inside my own world. Once there, I had become so comfortable being alone, that I did not let anyone in. Why should I?

Then my teeth began to crumble like chalk. All of them, gone, nothing but jagged nubs sticking out of my gums in only a few months time. The spasms, fainting, vision loss, hearing loss, constant ringing in my ears, was so hard to breathe, to stand. No balance... the pain was so intense. Not more than a a few months after all those scary things began happening and I lost everything. My whole body seem like a living thing that was independent of me. I didn’t even recognize myself in the mirror. Not only had I progressed another 15 degrees but the primary curve but it began stretched from my lower thoracic through all my lumbar. I was also was forming a secondary within the thoracic. The damage within each curve was progressing at a fast rate. My teeth were completely gone and I could no long read or hear. Nothing but 5 tones of loud ringing and milky clouds in my eyes. Eating? If I couldn’t drink it, I couldn’t "eat" it. By that time I was barley a year in to being "sick". Then, when I couldn’t get any lower, the people in my life that belittled me, teased me, mocked me starting pouring in affection and support. I wanted none of it. I spent much of that year in and out of surgical procedures. By the time that Christmas came around I told my specialists that if they didn’t leave me the H*** alone, I was going to loose my mind. ...now here we are at today. A year later and I am still progressing. Still more and more happening. Some stuff we have answers to. Others they do not have answers to. With each new day that passes more problems seem to mount. It has been a very crazy 3 years.

Now I do have outward signs. Now, it is painfully obvious that something is very wrong, indeed. I am treated completely different from the way I was treated 3 years ago. All because you can look at me and say "Yes, she has a deformed spine." Now all those nurses, all those doctors, all those family members and friends treat me like a human again. I just avoid people now. What is there to really say? "Thanks for labeling me when you couldn’t 'see' my pain?" "Thanks for pretending like I wasn’t worthy of your compassion?".

In the end all I can say, when yet again someone hasn’t seen me in 2 or 3 months runs into me, and begins to cry... All I can think to say is, "It is okay, really. My doctors keep me very comfortable. They are trying hard to find answers. Besides, I make these curves look good.". Suddenly I am the one comforting, the one supporting... when all I wanted in the beginning was someone to cry to. Someone to tell how scared I was. I couldn’t. Because if people cant "see" your pain, then it isn't real.

Weather we want to admit it or not, stigma surrounding chronic pain effects all of our lives. The pharmacist who gives an odd look to make sure you warrant the medication you are on. The lady in the check out line that wishes you would load your groceries up faster. The impatient family member who thinks they are not asking to much by getting you to help with a family function. The specialist who doesn’t think your condition is bad enough to warrant aggressive treatment. The neighbor who doesn't understand why you cannot keep a perfectly manicured lawn.

... it is easy for me to gain understand now. Just one look.. Just one whisper, or eyes that immediately look away. I know I have understanding and support now. I didn’t always have it. It is a shame for so many who have just as much pain as I do! Yet are treated with such careless disregard all because the people around them, cannot "see" their pain.

"Awareness" is slow. It is comming to light. Slowly but surley. Until it does I suppose all we can do is take a deep breath and be there for each other.

Rhaevin, You are a beautiful woman who deserves love as Chutz posted. Chutz, that is one of my favorite verses also. I never thought that a man could love that way. I was proven wrong!

Dani, your story always makes me cry, as Rhaevin's does. I can tell you my own.

My pain began when my youngest son was born. He will be 12 in May. For a year I was sent to psychiatrists and OB/Gyns who would evaluate me and essentially tell me that there was nothing wrong with me. Pelvic pain was just something women had to learn to live with. It was my menstrual cycle and I was blowing it out of proportion. My mother, sisters, and husband at the time all thought I was faking it for attention. For years after that my husband quit his job, wouldn't work, and called me a sissy, lazy, good-for-nothing woman who was faking pain so that I didn't have to work. He never acknowledged that I was the only income and paying for his lazy butt to stay home. I worked for years through that pain, silently throwing up in the bathroom on bad days and blazing through the pain trying to ignore it.

For 9 years I worked through my pain, telling myself it was all in my head, that I am crazy and a drug addict. I had ovarian cysts that would rupture or keep growing larger until they required surgery. I had my first surgery for a cyst in 2001. They removed my left ovary and told me that it would take care of the pain and I didn't need to return for pelvic pain. I saw a PCOS specialist who told me that I had all the symptoms of polycystic ovaries except severely excessive hair growth, so I obviously didn't have that. I would like to find that man and show him the endometriosis they found and the signs of PCOS. Needless to say, I began to have more and more pain after that surgery from the adhesions. Then came the miscarriages. My ex husband berated me for those. I was not a woman to him because I couldn't carry his child. He never took into account that his physical abuse may have had something to do with it. What baby stays in its mother's womb when she gets kicked in the belly and thrown to the floor? I know now that they died so that I wouldn't be tied to him for life, but it hurt so much at the time.

Late in 2008 the pain was so unbearable I had to try again. I had booted the hubby out and was in divorce proceedings. That was when the fainting began. It was so gradual, my pain increase. Surgery after surgery to correct this "phantom pain" and it just kept getting worse. Finally, I had a Gyn oncology specialist tell me I had to be faking it because he had cancer patients who didn't have this much pain. Obviously since I didn't have cancer, I couldn't possibly hurt this bad. He ate his words during the surgery he assisted on. Adenomyosis, endometriosis in the uterine wall, endometriosis and adhesions so severe they couldn't find my bladder or ovary. Then they began to take me seriously. Several surgeries later, including a rare staph infection requiring incisional opening and a wound vac, and I am still hurting. It will never go away.

I have many people in my life now who are compassionate and caring to my pain. My fiance, my sons, my friends and church members. Many still say I don't look sick, or that I am faking it. The day I passed out in church with tears running down my face with no sobbing changed that. Now they tend to help me in many ways so that I don't over do it.

My sister who has CP herself is not so understanding. My mother helps her care for her home, and has said many times that I just don't understand my sisters pain because mine is not as bad as hers. Is she kidding? How can anyone classify her pain as worse than mine? It is just different. It is my pain and not hers. I would love to be acknowledged by my mother that my pain is just as valid as my sister's, but it will never happen. She rarely saw any of my physical or emotional needs as a kid, and even more rarely tried to fill them or thought they were valid. That won't ever change.

So my extended family are out. They think I am faking this or lazy, and my mother perpetuates those ideas when she talks about me. If I laid around all day and did nothing then maybe she would believe me, but since I clean what I can and do for myself and family each day, then I must not be suffering that badly. I can't stand that. Caring for my responsibilities in the best way that I can is a wonderful thing to do. Letting CP rule every moment of life leaves us nothing but pain and misery.

I choose to no longer pay attention to those people who call me lazy, liar, or faker. I choose happiness in what I have, not trying to help others see that which they choose to ignore. At times I think those people say hurtful things to feel better about themselves, or out of fear that they will become CP sufferers too.

Sorry for the ramble. Apparently I had a lot that needed to be said. Thank you Dani for bringing up the tough subjects!
Mindy

Thank you Rhaevin. I really didn't intend to say all that I typed. I guess it needed to come out. Years of humiliation, and my story is not as bad as others. I guess we all face the stigma of being an embarrassment to family and friends, and the humiliation of being called a liar, drug-seeker, and many other things. As Dani said, understanding is coming slowly, but its moving toward all of us.

I started this same topic on another forum about three weeks ago, and it never fails to amaze me that people who choose to enter the health care field, no matter which aspect can be so downright rude and obnoxious and uncaring. From nurses to physcians to even medical secretaries. I encountered one a couple of weeks ago, and could not believe her or her actions. As a nurse, I always treated my patients foremost with respect. Respect for them as a humanbeing, respect for their illness, and the symptoms. I also respected their opinion and contributions to their own plan of care. I respected them in death. I know that the hospital director of nursing received many notes of appreciation from patients and families under my care. In a way, that is sad, because they should have expected to be treated well. I have chosen, in many aspects of my life, to hide as much of my pain as possible, as it is not worth it. BUT if the occasion calls for it, I will stand up for myself and demand respect. Had to do that in a pharmacy once, and ever since have been treated well.Soe are unaware that they are being condescending or rude, but others make it a point and it them I address when it becomes necessary.
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As for family members and friends, their actions speak for themselves. Especially when they deny you compassion, or help.