Time to Roll Up Our Sleeves

Time to Roll Up Our Sleeves

By Shaina Smith


Shaina Smith

Now that elections are over, patient advocates like me are waking up and realizing that there is an even larger up-hill battle to face. It is one that will challenge our ability to unite as a chronic pain community, to put aside political differences and see the larger picture: the basic rights of patients to access quality healthcare and treatment options.

How can people living with pain be assured that their rights to receive affordable healthcare, access to life-saving treatment options, and quality attention toward their invisible illness will be secured? There are no guarantees, but there is hope.

My role as Director of State Advocacy & Alliance Development for U.S. Pain Foundation affords me the unique opportunity to be privy to proposed legislation that could impact people with chronic pain and individuals with mental illness. At the federal level, our advocacy team has and continues to track the actions of policy makers, meet with key figures and demand that the patient voice always be considered. As an advocate and mother living with a rare pain condition, I cannot make guarantees when it comes to the fate of our healthcare system and state policies. But I can make a promise.

I promise to not give up my passion toward fellow pain warriors who so desperately need support, understanding, and sound laws that do not limit their treatment options. I promise to work tirelessly, every day, to mobilize men, women, and children living with an invisible illness who wish to become a part of positive change for those living with incurable pain conditions. I promise to fight for you and with you in the trying task of eliminating stigmas about the complex disease of chronic pain.

Your pain condition was and still is validated in my eyes. Your life is worth fighting for. So, when you ask yourself what now? it is my aspiration that your uncertainties are cast in the darkness and overpowered by the light that U.S. Pain’s advocacy team will sustain as we move forward. The pain community is such an eclectic mix of strength, perseverance, and ability that I have no doubt we will put any differences aside to work toward equality for people with pain.

Despite who you voted for, we are all connected and united as a pain community, and we must embrace our differences as we now work diligently together to protect our access to the care we need and deserve. That’s why this morning I’m rolling up my sleeves and re-evaluating my “To-do” list so that I can do what I can to support fellow pain warriors. If you are ready to roll up your sleeves and join our advocacy efforts to secure basic patient rights, I welcome your enthusiasm with open arms. You can visit: www.uspainfoundation.org and fill out an application to become a part of our advocacy family. Let’s do this.

Shaina Smith is Director of State Advocacy & Alliance Development for U.S. Pain Foundation. Diagnosed with various pain conditions, including Ehlers-Danlos Syndrome Hypermobility Type, Shaina utilizes her Journalism background to mobilize pain patient advocates and engage volunteers to participate in awareness programs.

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Authored by: Shaina Smith

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Kathy C

We are no longer “empowered” in fact most of us are afraid to speak up. We have been silenced. There is no Advocacy anymore either, any “Advocacy” is for the big Pharma and the Institutions that profit from all of this, not just the Pain Community. The Industry used information gleaned from Social media to not only Market to us, but to affect Public Opinion. The so called Pain Groups have driven the conversation to “Telling Our Story” which is ineffective and Anecdotal, it did not help at all for gaining any kind of foothold.
Words like Empowered, are meaningless qualifiers, meant to detract from any real discussion. The only so called Advocacy is only done with an eye to Corporate Sponsorship. This means there will be no real discussion of the issues.
The few Pain Groups left have sold out to Big Pharma, support from the Corporation who profit from this only leads to more obfuscation. No groups have been allowed to look at the big picture, the discussion was directed away by Corporate Shills. The truth is that the Corporate Media has supported a certain profitable view of healthcare, while deliberately ignoring any of the negatives. We are just the disposables, the ones that healthcare won’t even acknowledge exists. The running narrative is that we are just losers or drug addicts. This tale is told on the nightly news. The deaths and suicide are attributed to some false narrative and then ignored. Our silence has been very good for a number of Industries, the destruction of our credibility was easy for those Industry PR people.


Thank you for your work on behalf of the pain community. Regardless of political affiliation, we all share a common goal, compassionate affordable and readily available care for those who’s lives have been touched by disease and complex pain conditions. Today I’m feeling discouraged, after 23 years in pain management and only being 35 years old, for the first time I’m without my medications. My pharmacy of 12 years was not able to get my medication from their supplier. After being sent to two other pharmacies, I was turned away at both. I’m tired physically and emotionally of the pain the judgement the dirty looks the whispers amongst pharmacy staff and medical providers. I’m not a criminal a bad person or an addict and I’m tired of being treated like one. Blessings to you


I was disappointed when I went to the uspainfoundation.org website & looked up my chronic pain condition…..degenerative disc disease……the only thing that popped up was fibromyalgia .Fibro & DDD are totally different conditions, with totally different symptoms. I had hoped the uspainfoundation.org would have more complete, and accurate information.

cindy deim

We thanks you for all you do. It’s difficult as a person with pain to feel empowered. Thank you for empowering us.