My Story: Stop The Stereotyping About Chronic Pain

My Story: Stop The Stereotyping About Chronic Pain

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

Editor’s Note- Cynthia Toussaint is a frequent contributor to the National Pain Report. She founded the non-profit For Grace which is devoted to raising awareness for women in pain. She recently wrote a column for Maria Shriver’s website about the controversy that developed following a commercial that ran during the Super Bowl for opioid induced constipation.

As a woman who’s lived with high-impact chronic pain for over 30 years and an advocate for women in pain, I’m often dismissed by people close to me and the general public. But I never imagined that many of our country’s leaders would reject us.

When my nonprofit was invited to partner on a Super Bowl commercial this year, I was elated that chronic pain, a woefully misunderstood disease, would hit 115 million sets of eyeballs. While the ad specifically addressed a troubling pain medication side-effect, opioid-induced constipation (OIC), this was the ideal platform to give voice to the millions of people in the US who are surviving life-altering pain.

There’s much that’s important to know about this kind of survival. I have Complex Regional Pain Syndrome, also known as “The Suicide Disease.” For most people with severe chronic pain, the challenges are overwhelming. I was told by my physicians for the first 13 years that my problems were all in my head. I was bedridden for a decade unable to speak for five of those years, as the CRPS ravaged my entire body, eventually eliminating any chance for a cure.

As my losses and suffering piled up, I was abandoned by nearly all of my family members and pre-illness friends. I had to forego marrying my 35-year saint-of-a-partner John as that would have ended my healthcare benefits due to Social Security’s marriage penalty law. John and I lost our chance to have a baby. I lost my career as a ballerina, singer and actor. I now rely on a wheelchair for mobility. I live every moment of every day with pain and fatigue.

I can say without any hesitation that I would not be alive today if not for opioids. They have, in part, lessened my pain to a level I can more easily manage. Though luckily due to my partial CRPS remission, these days I only have to take them for “break-through” pain. This blessing contrasts sharply with the millions who must use a significantly greater volume of opioids than I do.

Despite this reality, a dark storm’s been gathering about opioid abuse. The sexy headlines talk only about non-chronic pain people who become addicted and are often lead to heroin use and ultimately die from an overdose. There’s no denying that opioid use can be tragic, but it’s equally tragic when the opioid battle-cry overlooks the life-saving needs of chronic pain patients.

While I was aware that our Super Bowl ad might cause some blow-back, I was stunned to read the cruel, mocking tweets from people who carry much weight in our country.

I have to believe these insensitive remarks come from a place of ignorance. If any of these gentlemen knew and stayed by the side of a loved one with high-impact pain, their remarks would have included compassionate, supportive words for those who require opioids in order to function.

Moving forward with opioids, we must hear deeply the voice of the pain patient. Bill Maher, I’d adore an opportunity to discuss this issue on your show. Governor Shumlin, I’d love to be a panelist at a Vermont town hall that discusses opioids. Mr. McDonough, I’d welcome an invitation to the White House to educate your boss about the plight of people with pain.

The good news is that media is talking more than ever about chronic pain. Doctors are far more aware of our suffering – and we get referred to pain management specialists more quickly than ever.

Most importantly, pain research is at an all-time high. In fact I was recently the first person with pain to speak at the National Institutes of Health. There, I and my story were welcomed with open arms by these world renowned scientists – and I was blown away by emerging therapies that will make opioid use obsolete.

In the meantime, we must open our hearts and minds and become educated about pain as the serious health crisis it is. We must find the humanity to offer those suffering every opportunity to survive and thrive.

For starters, there’s the 2010 Affordable Care Act which mandated the Institute of Medicine to draft a comprehensive report on the state of pain in America. They reported there are 100 million people who suffer persistent pain in the US at a cost of $600+ million annually in lost productivity. The vast majority of opioid prescriptions are written responsibly by physicians.

People with pain who take opioids daily are dependent on them to sustain quality of life. Dependence is different from the psychological craving of addiction.
Pain patients don’t want to take opioids any more than cancer patients want to use chemotherapy. However, many people with pain need opioids to function physically and pursue the joyful aspects of life.

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There are 20 comments for this article
  1. Cynthia at 5:30 pm

    I am so sorry to hear this. These stories about what’s happening to people are so heartbreaking and really make me angry. It’s cruel and unusual punishment…punishment for illness we have no control over, and are powerless to object to. May something happen soon to help us all.

  2. M at 11:27 am

    I am a ‘victim’ of Gov. Scumlin’s chronic pain ignorance. Unfortunately, my Primary Care Doctor is following his lead and I am left without medication. Try finding a Pain Specialist in Vermont – there are none! I’m doomed and left with no other choices 🙁

  3. BL at 10:09 pm

    Jean Price, I was at someones home when the commercial aired and there were about 15 other people there also. A friend of mine turned to me and said ” I thought you said that getting pills for pain had gotten harder.” Someone else said that enough people were taking the medications that it was worth the manufacturers spending the money to invent the medication, manufacturer it, do clinical trials, etc and that was so many millions of people that more were getting the medications than not getting them. And that makes sense. The number of people at this site and others that can’t get adequate pain management or any at all are no where near just 1 million and probably not even a few thousand. The number of Americans that suffer from chronic pain are in the million and millions.

  4. Liz at 2:33 pm

    If it were not for opioids, I wouldn’t be here. These attacks are based on ignorance & laziness. I’m very frightened that the government is going to limit or cut off my access. If that happens, I don’t think I would last very long.

  5. strongjohn at 2:06 pm

    Cynthia.
    Bless your heart you have courage of a lioness. Don’t let these nay sayer make you down they don’t know how it feels.there just drunk wind bags I been thru countless back surgerys neck to repair my spine I use to carry extra x-rays to show the pharmacy staff
    they look at like a druggie and treated me as won just want to not be in crippling pain i finally had a pain pump installed but that another nightmare in the day thank you Cynthia You are a saint

  6. CSA at 5:20 am

    The pendulum has swung too far in the wrong direction. There is not a single study in the CDC report that lasted for over a 12 month period, there are no viable alternatives – a heating pad and ibuprofen!?! – and as recently as the late ’80’s prescribing thousands of milligrams of opioids was common practice to deal with the issue of tolerance. Further, cancer patients – and I do feel especially for these patients – are not affected by these rules, which to me is an acknowledgment the medications work but the population of chronic pain suffers is too difficult to sort out from the addicts (or those who regrettably chose this medication to commit suicide) so it’s easier to lump everyone in together. I am all but horrified that there has not been more outrage directed at the CDC report – not the sufferers of chronic pain.

  7. Robert at 11:30 pm

    Thank You for saying this. I also only use my pills for breakthrough use only too. I only take it it when the pain level hits a 10. Even though every morning I wake up with Horrible Chest Pain & Nobody understands what I’m going through. They keep thinking that I can do the same things that I did before at the speed that I could go at before. It’s just not the case.

  8. Jean Price at 10:17 am

    Cynthia…your ability to tell your story in a way that speaks of the issues we all have is certainly a welcome glimmer of hope in these dark times. I was very distraught with the super bowl commercial, because it seemed to me it once again put pain in a laughable position….looking longingly at people coming out of bathrooms, and envying a dog who can poop and a woman with toilet paper stuck to her shoe is not my idea of tasteful advertising about our lives with pain and the possible side effects of our medications!! The saddest part was the focus on pain got lost in the laughter and it made us a big bullseye for people like Maher to use as joke material! The Pain Foundation told me they hoped this ad would help people in pain with the “stigma of talking to their doctors about constipation”. Seriously, it really didn’t address this at all. It actually created another stigma for us! I hope they didn’t get a chance to preview it, because that would mean they really messed up, in my book! And I was never answered about whether adding their name to this ad meant they received money from the pharmaceutical company. If they did, maybe the money clouded their judgement! It does for many! I see ads for addiction services on their web pages and how to find doctors to treat your addiction, but no similar ads for people in pain. I see headlines on FB posts from the Foundation that will give the opposite emphasis to the public if people don’t read the whole article. Many of these would be best aired on the web site rather than thrown open to the world to misinterpret. I see them constantly referencing addiction in the same pain article….not separating it out just like our agencies have done. I see many areas they might impact but little input from them about this…suggestions made that weren’t even responded to. It would be nice if they would add information to our comments on these articles, even just to help us be more aware of what is in the works for them. I often think this site fuels unrest and anger more than it needs to…with some education thrown in but often with a positive slant when there is nothing positive about the article! I’m dismayed, to say the least…and overwhelmed with the suffering happening to those who have been so horribly impacted first by pain, then by denied treatment and labeling. I applaud your efforts and I imagine you made an impact with your contacts. I wonder, though, if they see us all in you or just see you and what you’ve done despite your pain. This is always a risk, and nothing you do or don’t do will likely change that. It is difficult to fight against senseless issues using common sense! And what is happening to those who live with pain is senseless at best, criminal at its worst! And sadly the problem they wish to address won’t be solved either. We all do the best we can given our individual situation, yet this is turning out to be not enough. And each day brings more people with less medication to help them have any quality to their lives. So very wrong!

    BL…your conclusion that “This ad confirms that the majority of those with chronic severe pain are having their pain adequately treated.” seems confusing to me! I actually had to read the statement several times to see if I was getting it correctly. I don’t believe many will agree with your logic, especially since this site is full of comments from those still suffering and afraid of more reductions of their pain medications. I just wondered if you could clarify this for me, perhaps there is more to your line of thinking than you stated. If this is how the general public viewed it, that would seriously lessen our need for better medication allowances in their eyes, I’d think. I don’t see the correlation, and I don’t see people’s lives reflecting adequate treatments!

    Ks….I can’t imagine how tough life must be for you, and I know there likely are others in situations similar to yours. I learned along time ago that pain is not a competition, but the truth is some do have it worse than others….worse pain, less treatments, less support, less financial help, less transportation, and many other things we all need to live. And that just adds to the unfairness of living with pain. I want to suggest support groups, or checking with social services at a local hospital for avenues of help, or looking to a local church that might be able to ease some of your burdens…but that is all stuff I imagine you’ve tried. And it seems pretty trite to say it. It also may seem trite to say I care, and so do many others…and I’ll pray for you…and I will. Yet, maybe the only thing I can really do is say I’m so very sorry you have it so hard. You deserve better. And I hope you can find the strength and courage to keep going…and get something to ease your pain and the hardships you’re living with.

  9. Amy Hartmann at 8:19 am

    Love the last paragraph of this story…pain patients don’t want to take opioids any more than cancer patients want to take chemotherapy. How I wish that every person could understand this very clear comparison! A very powerful and succinct message. It takes people like you to effect change on this front – you seem to be doing a great job so far – keep it up!

  10. Leah at 11:27 pm

    Unfortunately the government owns us now. Unless you have millions of dollars they are dictating what ever they want to do. We can only leave the country. This is a communist society now. Add to the fact they want to kill off all the sick and dying.

  11. BL at 11:55 am

    If so many people are having the problem of OIC that it is profittable for a pharmaceutical company to invest money in the development of this drug, then there are many, many more people being prescribed opiates and taking them regularly for chronic pain than a small number of people want others to believe. This ad confirms that the majority of those with chronic severe pain are having their pain adequately treated.

  12. Alfonso Cervantes at 1:07 am

    Dear Cynthia. I was reading your blog about the superbowl add and it’s sad that people reacted negatively. I am a 43 year old male and I was diagnosed with CRPS in 2008. I know that you are an advocate for women but I just wanted to thank you for sharing your story. I am not alone and it’s not in my head. Thank you for bringing awareness to this invisible illness that not many people are aware of how pain can be so disruptive in our lives. Gracias! Alfonso Cervantes

  13. BL at 9:04 pm

    I am assuming that you are receiving SSDI off of one of your parents records as as Disabled Adult Child because you mentined losing your health insurance because of Social Security’s Marriage Penalty. This only applies to those that are found disabled before they reach 22 years of age and have a parent that is receiving SSDI, retirement or is deceased. If you were to marry someone that was also receivng SSDI as a DIsabled Adult Child, your benefits would not be affected.

  14. Breehan Saunders at 8:19 pm

    I agree 100% with you!!! Without opiates, my pain would take over my life. It helps me function. I don’t feel addicted. If I stop for a day or two, I have NO withdrawal or cravings. We need people like you to speak up for us!! Thank you!!

  15. Cynthia at 5:49 pm

    Thank you, Cynthia, for your story. I applaud you for the Super Bowl ad. A start toward educating the public about chronic pain, a horrible disease that is so misunderstood, or rather, is NOT understood at all. I’ve had it for 8 years, since I turned 60. Has totally turned my life upside down, as it does to everyone. Thanks again.

  16. Ks at 3:06 pm

    Least u got help ill never be so lucky. Least u got meds that help, mine were cut to barely anything and im forced to try n survrive on ssdi alone and get 16 bucks amonth to eat with lolol id trade places w u anyday. Got absolutely NOONE.

  17. Jo Good at 3:05 pm

    Keep up the good fight! I, too, am heartbroken by the number of people who either think this is a joke or an “excuse” for medication that is not medically needed.
    They never tried to walk a mile in our shoes. Or tried to work with our hands.
    My CRPS covers both arms, from shoulders to fingertips. And although I am currently enjoying a reduction in pain…perhaps a mild remission…I still require daily extended release pain medications.
    I wish these people would acknowledge that chronic pain survivors take medication and relief measures in order to HAVE a life and engage with other people, not to hide from the world around us, but to be a part of it.
    There is a big difference.
    God bless you, Cynthia Toussaint.

  18. HAZZY at 2:09 pm

    AMEN !!!!! MY DOCTOR TOLD ME THAT UNDER THE LAW SHE IS NOT ALOUD TO PRESCRIPE PAIN MED’S IS THIS TRUE OR NOT !!!! SHE IS AN INTERNIST, SO I NEED THE TRUTH !!!!!…………….THANKS