The Crime of Chronic Pain

The Crime of Chronic Pain

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

I met Eddie on my first date with my life partner John nearly 36 years ago. John took me to a premier of Robert Redford’s masterpiece Ordinary People at the old dome theater in my Bay Area hometown.

I adored Eddie right off. Just before the lights dimmed, a booming voice came from the first row. “Hey, Garrett, what’s a sweetheart girl like that doing with a doofus like you?!” Every eye in the old dome shot to Eddie. He possessed great energy and humor. He had charisma to burn.

A week later John took me to Eddie’s house, er, theater where he showed us his latest “home” movies. Among others, this guy had made a brilliant, 8mm remake of Jaws. I could see how talented and driven Eddie was. His boundless love for showbiz was just like mine. And I realized that afternoon I would know – and probably work with – Eddie in Hollywood someday soon. Fade to black…

Cut to… a decade later. I was extremely ill with a mysterious body-wide pain that was triggered by a ballet injury. My life, my career were on hold while I survived day to day in housebound prison with only John at my side. Eddie, on the other hand, was a full-steam-ahead movie maker. Francis Ford Coppola had financed his first horror film and Eddie invited John and me to a private screening and party.

Despite my pain, I enjoyed the movie and people as best I could. But something struck me wrong. Eddie and the pre-teen actor who starred in his film had an odd relationship. Their word play and physical interaction suggested an inappropriate intimacy.

Still I was stunned when the papers reported Eddie had been convicted of child molestation and was in jail. Like mine, his life had come to a screeching halt, but for a radically different reason.

Unlike me, Eddie got a second shot at his dream. During his time behind bars, he wrote a screenplay – and again with Coppola’s backing, directed a critically-acclaimed film that did decent box-office. While I was appalled at the crime Eddie had committed, I yearned for the show biz life that was at his beck and call.

One day after John and I moved to LA, the phone rang and I was surprised to hear Eddie’s nervous voice. He wanted to re-connect and, while hesitant and confused, I was open to it. Others, however, not so much. Even though he’d done his time and was in on-going therapy, society damned him. Eddie was a pariah, marginalized – just like me due to my catastrophic, invisible disease.

Over the next several years, Eddie and I built a most-unlikely bond. We talked deeply about the depression, abandonment and isolation we felt after everyone from home ran for the hills. We shared the emotional scars of trying to re-build our impossible lives. Eddie was the only person concerned about John and worried over his constant caregiving duties. “Who’s there to help him?” he’d ask. I sadly replied, “No one.”

Then Eddie scored a big hit. Because I couldn’t get into a cinema, he personally screened me the freshly edited DVD version. The movie told the story of a social misfit with super-human powers. Eddie wanted to get my reaction first because “the lead character is you.” I was deeply touched.

After that, I saw Eddie less and less. The last time was at a Paramount Studios screening of his next film. The theater was so crowded it took me in my wheelchair an hour to get a word in. He kneeled down next to me and whispered, “You’re the only person in this room who cares about me. Everyone else just cares about what I can do for them.”

After Eddie invited me to come spend a day on the set of his blockbuster sequel, but didn’t follow through, I never heard from him again. He didn’t return my calls – and I felt that old familiar pang of abandonment.

I was left behind. I soon realized that the crime of high-impact chronic pain is more unforgiveable than the worst of our civil transgressions. Even though Eddie was a convicted sex offender, he was reliably able-bodied. He wasn’t housebound with an invisible disease. He wasn’t stuck.

My strong guess is that Eddie couldn’t deal with my never-ending pain because he’d done his time – and was free to move on and live his dreams. Later I got somewhat unstuck with my work as a patient advocate. But in my heart I’m still a performer, yearning, craving for that stage. There’s no pardon waiting for me.

On a broader scale, I suspect there’s no pardon for any woman (or man) in pain because society has yet to accept chronic pain as a serious public health problem. Until we have the awareness, research and resources afforded diseases like cancer, Alzheimer’s and HIV/AIDS, we’ll remain at the bottom of the heap.

There are 100 million people in the US with pain. For change, we must rally behind the National Pain Strategy. That’s how our voices will finally be heard and we’ll gain respect. Only then will we be removed from our shackles and embraced by mainstream society. Only then will we gain our get-out-jail card.

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There are 24 comments for this article
  1. Diana Gordon at 8:14 am

    THANK YOU for writing this article. I have a number of “friends” who have moved forward with their lives and who just cannot understand why I have not. I often hear from people when they have a pain issue – hurt neck or back – and wonder how I live with it! Then they get better and wonder why I don’t

  2. Russell at 7:34 pm

    Cynthia,
    I just wanted to follow up and tell you how much your articles have resonated with me. And I’ve hesitated to even attempt, because I struggle with articulating my thoughts because of the physical pain. Even Siri doesn’t understand what I’m saying when I’m in pain. And that’s pretty sad.
    Seems to be a moving target but you seem to know that from your own experiences. What I understand of your article is that it is not only just this one friendship but also a reflection of the fact that society is willing to “forgive” him, and he can reintegrate back into a fulfilling social and creative life again. And even though you haven’t committed any crime – you’re still condemned to solitary confinement and incapable of even being the creative person you used to be.
    In a previous article you described a physical therapist who violated your boundaries & broke your elbow. It’s not just people turning their backs on those with chronic illnesses … But people presume they “know better” than you about your own body & our society seems to grant permission to “pathological fixers” to disregard boundaries, even when you do take active positive steps forward. Those boundary violations seem to become the norm as health & circumstances deteriorate.
    In the last 10-12 years, as chronic pain exceeded my ability to keep it invisible, I researched the toxic reactions – to “understand”. It’s appalling to realize how women are systemically marginalized & stigmatized even by the healthcare community. That’s before addressing the issues of chronic pain/illness.
    Thank you for being an advocate & the thought provoking articles.

    JoDawn,
    Thank you for the virtual hug. No chess partner. High pain levels, FUBAR circumstances, & pervasive toxic encounters have left me hesitant. Toxic boundary violations have undermined all viable options I had a few years ago. Hesitant to even contact people who have been close friends & who’ve treated me well – because they don’t understand the full impact of the toxic violations of the majority of people.

    Wish it was a matter of changing terminology. But it seems to goes deeper. Our society seems to have shifted. Maybe I’m just becoming more aware. Grew up around elderly & disabled people. Ran off to Montana when I was 18, landing in a town of 150 people. Many elderly folks. One of the bars/dry goods stores was owned & operated by a 90-year-old man blinded in his 20s. My 2nd summer I watched him “card” 2 young men who came in to buy a six pack. Knew him well enough to ask if he got a “special” glass eye in the mail. Never occurred to me to argue with people what they could or could not do.
    Tried to go to “another” Church support group. Even though the man I talked with comprehended chronic pain, my prior experiences with men has been more damaging all in all. As a man, I can attest to the fact – a lot of men are illogical, irrational, passive-aggressive, and refuse to listen. Not all. But a lot. It’s very likely women invented both fire & the wheel – & men took the credit.

  3. JoDawn at 12:29 pm

    Exactly. Thank you for summing that up! I wondered why people weren’t getting it, but didn’t have the words.
    You obviously have a gift with them!

  4. Maureen at 8:01 pm

    To those of whom Cynthia’s story proved confusing…
    What I get out of it is that while Cynthia ended up sacrificing and giving back her friendship in times of his suffering and celebrating his success alongside him…because she is compassionate, despite his crime… he ended up turning away from her during her suffering. His friendship, for her own reasons, meant something to her.
    But, her friendship ultimately meant nothing to him because he is selfish and uncompassionate.
    She’s showing the parallel that we all deal with as pain folks who also have compassion for others and give of ourselves, yet…
    We don’t get it in return.
    We lose friends, family, doctors etc etc….those who really don’t have care and compassion for us.

  5. RMR at 4:00 pm

    Thank you for sharing this with us. There is comfort in knowing I am not as alone as I feel. How do we make our voices heard by those who have the power? Those who hold the keys to the medications we need – not to get high, but so we can shower and go to church on the same day!? I recently moved, and called ahead to see if the pharmacy would fill my scripts. I was assured it wouldn’t be an issue, here in a state with marijuana shops every 5 miles. First trip, my script was filled, but the pharmacist said it was the only one she would fill. Who is she to override my doctor’s care? Second month, different pharmacy. Took scripts, and as I climbed back into bed, they called and said they couldn’t/wouldn’t fill. So grateful the third pharmacist was ballsy enough to say yes, I will help you. And he did! Praying next month he won’t be afraid of the governmental oversight of his decision. New Family doc (visited for standard healthcare) recommended I check out the pot shops… So pot is cool, but my prescription from a board certified compassionate physician makes me a drug-seeking addict!? Rather than go thru the agony of looking for a doc in my new hometown, I fly back to see my dear Doctor. So grateful he is not fearful.

    I empathize with each of you, and pray you find a doctor to manage your daily torture, and a pharmacist willing to do the same.

  6. Mark Ibsen MD at 11:06 am

    Went to a rodeo last night in Townsend MT.
    It was about
    “Tough Enough to Wear Pink”
    Breast cancer is now noble.

    Pain is not.
    Not yet anyway.

  7. JoDawn at 9:30 am

    ((((((((Hug))))))))

    I’m so sorry you’ve dealt with such jerks! Bad enough to live with chronic pain, but to have to constantly explain yourself or justify wanting to have some relief, beyond the pale.
    I was especially shocked that clergy would turn down such a simple request. I hope you can find chess partner soon!

  8. Jean Price at 9:19 am

    Lorre…I heartily agree with taking the word chronic out of our vocabulary regarding pain!! I just had this discussion with a support group and was told chronic pain is a medical term so it has to stay!! But all medical terms were made up at some point….so why can’t we make a new one to use, even if it’s just amongst ourselves?! Like persistent pain, or life limiting pain, or daily life limiting pain, or long term pain, or long term, life limiting pain. Or a hundred different other ways to say what we face!! WITHOUT the negative connotation of chronic…like chronic complainer, chronic alcoholic, chronically late, chronic liar, chronic underachiever, or …chronic pain!! Poor company, I’d say!! What we say is so important as we try to elevate our situation to public awareness! And let the medical world keep using it….we don’t have to….besides, in reality chronic pain as a diagnosis is being replaced with chronic drug user anyway…or worse chronic “opioid use disorder”!! So let’s make our stand before this other label has a chance to stick!! And let’s name it what it is…life limiting!!!

    As for this article, I think there are better…less criminal…ananolgies to our pain and its impact, like instantly aging, or instantly losing our functional independence, rather than being in a social prison like released child abusers. I get what Cynthia is saying, yet I cringe at the comparison, since those who break the law are part of what we are fighting regarding addiction and use of street drugs for a whole different goal than physical pain control!!! As for our loss of friends… We certainly do lose friends, yes…but if you look at the basis of those particular relationships we lose, it is the “doer” friends mostly, when we can no longer “do” things with them, or the friends who don’t know how to appropriately support anyone who is hurting…without wanting them to be better so they themselves will feel better too! This is not only true of pain, but other situations of loss, where allowing the pain is hard for those who feel they can’t help us out of our pain…not realizing we know this and don’t expect them to but want them to just be beside us and love us despite our limits or our sadness. I had a dear friend once who told me it was easier for her to think of me as mentally ill rather than as someone who would always live in physical pain!! The core thought here being EASIER FOR HER!! So, our pain is rarely the issue, it’s more likely to be the other person’s issues of being out of control and being unable to FIX us!! Add to this, the root word of pain is from “punishment” and we are seen as “deserving” our pain in a round about way! When you see a person with their arm in a cast…have you heard people say (or even said yourself!!) “What did YOU do to YOURSELF?” Rarely do people ask what happened…since the unspoken sentence is you must have done something stupid!! There is so much tied into how people view pain, besides the opioid issues. It’s a lot to fight and the ones fighting are the least able! Grim reality, isn’t it? But if we continue to hold up the truth and fight against the governments lies……and stop using any references to ourselves that are negative…we have a chance for change, albeit a slow process. And if we could somehow get organized with the goal of ACTION, instead of just information or news sharing…we might be better able to turn this all back to the sanity of treating pain appropriately. God help us, we must!!

  9. david at 8:53 am

    The NPS will further sunjugate people in pain to the designs of a few elitist organizations who have never shown much regard for individuals in pain and who have had a role to play in the rapid increase in pain from arthritis, diabetes, and neuropathy over the past generation. The NPS doesnt improve existing rights of people in pain or create new rights for people in pain. The evidence base behind the ideas to the NPS is thin and lacking. The creators of the NPS are Benedict Arnolds for in the draft they were pro- opioids- and in the final version they became anti- opioids. It was yours truly who had t tell them the goal of the NPS should be to lower the prevaelnce of chronic pain- they didnt value that until i and another commentator told them to- go figure.
    Pain care will improve and evolves when it becomes more democratic and more individualistic. The creators of the NPS -and their supporters unfortunately dont believe in that.

  10. John corley at 6:55 am

    Hi Cynthia , I found your post to be so compelling . I wish you the best . Maybe you would be able to give me some direction to go in ?. I have been suffering with pain for 30 years
    And I live in North Carolina and I find that doctors will not prescribe meds . The DEA has pretty much has stopped them from doing so . Right now the doctor I have been seeing sent me a letter saying that he won’t be able to see me anymore because he won’t be treating anyone who need narcotic medication . I have called at least 20 doctors and they don’t eather now I can’t get any medication …. I really don’t know anymore . I haven’t ever replied to any post before but your post touched me . Take care John

  11. BL at 8:23 pm

    I have read articles that say chronic pain patients are going to be forced to get their pain meds from the streets and now this comparing chronic pain patients to a convicted child molester. No wonder chronic pain patients as a whole aren’t treated with any respect.

  12. Tim Mason at 6:36 pm

    That’s better Tamara. I have been dealing with osteoarthritis for over 20 years. I was seeing doctors for my illness long before there were “Pain Management” doctors. (Your oncologist or neurosurgeon took care of your needs).
    Like another poster said here in this tread: I have a chronic condition and pain is a symptom. Pain is a symptom of certain diagnosed illnesses and that is what we get treated for, that is what we see a doctor for. Chronic pain has that notion “They can’t find anything wrong, but I hurt.”
    In the spinal health blog people state what their condition is, what surgeries they have had an it is easy to relate to them. You can even private message them and discuss in more detail and phone each other.
    This site is good but it is limited in its ability to “get people together”.

  13. Anonymous at 3:11 pm

    I agree, the parallel is true. Chronic pain patients have had to deal with “Guidelines” written by uneducated agencies, and jump through hoops to get relief. This Story was well written, professional and current. We do need research funding just as much as Breast Cancer. Until that happens, along with adding real chronic pain patients to Advisory Boards nothing will change.

  14. Russell at 2:15 pm

    Thank you for speaking the truth about how poorly our society treats chronic pain (illness, & other disadvantaged people). Please forgive my wordy attempt to validate the comparison you bravely made.
    Only prescriptions for opioids was for post surgery on my eye. Decompression at chiropractors years ago to avoid back surgery. Avoided narcotic pain meds all these years for my own reasons. Only just got an appointment with a pain specialist … For Oct 28. No idea what to expect.

    Finally conceded to Medical Marijuana – Only after an article on a doctor’s 18 month study highlighting CBD products. Using mostly CBD topical & edibles. Already dealing with “brain fog” and prefer the CBD.

    Have lost almost all peers, friends, family because they’re convinced it’s all “attention seeking” & “playing the victim”. Offers of help as I lost my home / career usually turned into a metaphorical Trojan Horse as most men (in particular) would first ask questions – then interrogate, lecture and/or assert social dominance by arguing matters they know nothing about. (Amazing how laypeople are experts on medical, psychiatric, legal, etc)

    As increasing pain started to impact my body language, coordination, and ability to articulate clearly – I’ve become a target for “pathological fixers” and men who are self-appointed-disciplinarians – Positive it’s: incompetence,”self pity”, “low self esteem”, “depression” … OR even more nefarious. Anything but “chronic physical pain”. A Priest refused my desperate request for someone to share a weekly cup of coffee with and maybe a game of chess. Instead, he persisted in asking if I needed psych meds – or was high on illegal drugs. (Most men refuse to believe physical pain can be “that bad”)

    Paying attention to some of the politicians and their followers I recognized the mixture of toxic masculinity, emotional arguments, denial of factual evidence, character assassination, and general dehumanization of anyone whose life experience doesn’t match their own limited / privileged (white/male) lives. Apparently the people in my life reflect a larger percentage of the population than I realized.

    I absolutely agree with your comparison based on my own experience and observations. And for what it’s worth – toxic masculinity is very much a real thing. Shocking to discover how aggressively toxic many behave towards those they judge “less than”.

  15. Lorre Mendelson at 1:48 pm

    I read your article on the crime of chronic pain. As an incest survivor and child advocate, your comparison to the ignorance of people understanding pain and sexual predation shocks me, Cynthia. Predators are about power and control, not sex. Basically that child was held hostage and victimized. I spent enough time being a victim in my own life and now have the strength to stand for myself and others.
    I actually believe the term chronic is pejorative and puts us in the light of being a pain in the butt to society. No one says “she is chronically on time” or he chronically pays attention to his work. Let’s find a new term that is neutral like I have pain, I often have pain, or I have on-going pain. I think some doctor came up with that term who was tired of hearing people talk about their pain, like “chronic” fatigue affected mostly women so I think it was seen more as a complaint that a real illness. I hope you will be one of the leaders since you have the ear of many important people.

  16. JoDawn at 12:57 pm

    It seems our only real “public awareness ” has been mutated into simply the opioid crisis. Why? Can’t they see the obvious reason that so many people are taking pain meds?
    I had a pharmacist tell me (about 11 years ago) “you realize these are some serious pain medications”. I said, yes, that would be for my serious pain.
    Fortunately for me I was able to get to know my small town pharmacy (that I REFUSE to leave, no matter how much my insurance pressures me to use their mail service!) and they got to know me. They cheered for my improvements and prayed for me during harder times.

    But what I think is truly poignant is that even a prior child molester who realized your wish for him to have his own healthy life…even HE eventually gave up, as so many of those around us do. 😢
    I know it takes an amazing person to be the partner of someone with chronic pain. Sadly it seems it takes a lot just to be a real friend.
    Our society needs a lot more givers, and a lot fewer takers.
    No news flash there.
    Thank you, Cynthia, as always your writing makes me really think!

  17. Angel at 11:30 am

    Yes we are pariahs we suffer needlessly silently and at times hopelessly. The picture only becomes more dim as we are further alienated from the medical community that is supposed to care instead of harm

  18. Tamara Johnson-Scott at 11:23 am

    Tim, I can understand the confusion maybe it would be easier to compare a convicted drug offender/addict to the treatment that a pain/chronically ill patient receives from society! The FEELING of BEING ABANDONED from family and friends because let’s face it would YOU want to “hang” with someone who’s in constant pain and can’t do the fun things you do?!? NOPE!! Even I can honestly say I WOULD NOT want to have to constantly feel like I had to “lift their spirits” and “guilty” for having fun when they’re not! So the “stigma” is people change how they treat one another when one is chronically ill.

  19. Mary Dunigan at 10:39 am

    It is amazing that you have written this piece Cynthia! I can’t telk you the amount of times I have been appalled by the treatment I receive from the health care community! Treated worse than a caniving drug addict and less regarded by society than a pedophile! How do people that deserve the greatest levels of compassion receive the least? Thank you for giving us a voice Cynthia but I still feel a total loss as to what to do to promote change! Feeling severely disheartened! 💔💔💔💔

  20. cindy deim at 10:37 am

    Wow, loved it. Very powerful. It is interesting we get left behind and the rest of the world regardless moves on. We need to be seen, we need to mobilized. People with HIV were invisible for a long time. If they can do it, so can we.

  21. Dian M. Lovejoy at 10:30 am

    This one had a life of physical things horse trainer,wrangler,sculptor,artist, poet short story writer, gardener, construction worker,stage…..even at the beginning of paindom continued most of these activities, 14yrs ago was in a life threatening wreck, that changed everything, now have to decide either to make the bed or take a painful shower, fix supper or take a shower, you get the picture. Life has become an either or, sometimes neither. Too much pain to lay still, too much to move, my story is but an echo of all the other pain sufferers out there…this one hurts for u all…be safe an blessed yatahii her friends.

  22. Tim Mason at 4:33 am

    This is an interesting story but I cannot see the stigma associated with that of a child molester (sexual sociopath) being anything like that of someone suffering from pain. One is morally wrong and punishable by the justice system, the other is not.

  23. Anonymous at 4:02 am

    The parallel is very true but u & the rest of us have not committed any crimes, yet we are treated as though every month as we suffer through performing a drug test, therapies not do very little but make us poor, & that frightening trip to the pharmacy hoping we are not turned away for whatever reason the pharmacist deems the issue may be. I am personally sicker over this every month. Sure I have my good days but cNnot make long term plans because of fear of not having any meds renewed.