How People With Chronic Pain Feel About the Opioid Crisis

by Lene Andersen, MSW Patient Advocate

The opioid crisis is being discussed a lot in the news. The focus is almost inevitably on addiction, overdoses, and what governments and other regulatory agencies are doing to stop the rise of these tragedies. What’s missing from the discussion is the collective voice of 100 million Americans who live with chronic pain and frequently rely on the prescription forms of these drugs for pain relief. We asked the chronic pain community how they felt about the opioid crisis.

Drug free zone street sign

It’s becoming harder to get the treatment you need

Doctors seem to be almost afraid to write prescriptions for the meds because they don’t want to come under governmental scrutiny.” — Carol

Opioids are being restricted on a number of fronts. Some states are limiting how many opioids can be prescribed by a particular pharmacy, there are proposals to limit the amount of opioids prescribed to people on Medicare and Medicaid, and doctors are scrutinized intensely if they prescribe opioids.

Doctor holding in hand holographic words "Chronic Pain"

Who can treat your pain?

My rheumy won’t prescribe them.” — Ruth

Your rheumatologist may have told you that they don’t treat pain and it can be hard to understand, as rheumatoid arthritis (RA) is a condition that may cause pain. There is a growing knowledge that pain is a complex condition unto itself and therefore requires a specialist. With the advances of better RA treatments, such as biologics, rheumatologists are increasingly focusing on treating the inflammation, often referring patients to a pain specialist for treatment of the pain.

Addiction text on scrap of paper.

Misperceptions about pain treatment and addiction

Some automatically think everyone on legal prescription is going to become ‘addicted.’” — Janine

There are a lot of misperceptions about opioids, particularly that addiction is inevitable. Many don’t understand the difference between dependence and tolerance — physiological processes that happen when taking certain substances (including caffeine) — and addiction, which includes social and behavioral factors. When prescribed and taken correctly, opioids result in addiction in one quarter of one percent of cases.

Tech writing on urine sample.

Jumping through hoops at the doctor’s office

I am NOT an addict, but they sure make (me) feel like one.” — Pam

People who live with chronic pain may be treated as drug-seekers when asking for treatment for their pain. When referred to pain specialists, they are often required to sign treatment agreements and undergo regular or random drug tests. It can be a really difficult process to undergo, but these processes protect your doctor’s ability to continue their practice.

Shunned penguin.

The stigma of pain

It makes me feel like I’m a criminal for wanting to participate in life. You’re shamed for not feeling well enough to do things, then shamed if you do something to change that.” — Robin

When you live with high levels of chronic pain, opioids are a tool to help you participate as a family member, an employee, a friend, and much more. Without effective treatment, pain may lead to depression. The suicide rate among people with chronic pain is twice as high as those who do not have chronic pain.

Tape over mouth

People in pain are being silenced

I didn’t tell [my doctor] about the times I leave the family room and ‘go to the bathroom’ and sit on the toilet just to cry because I’m overwhelmed by pain … I was afraid of being seen as a med-seeker.” — Gina

People in chronic pain fear asking for medication that will help them simply live their lives. Many have experienced a reduction in their treatment. This has the real potential to not only increase their pain, but also affects their entire lives, as well as that of their loved ones.

Taboo  spelled out in block letters

Fear for the future

It’s a very real possibility that the medicine that gives me room to live with dignity and mobility could be taken away — not because of my own actions but due to the underrepresentation of chronic pain patients and the public’s willingness to see us as addicts.” —Tawnee

The one-sided nature of public debate and information forthcoming from lawmakers is having serious consequences on the lives of people with chronic pain. Many fear a future where opioids will be outlawed.

Scales of justice

Pain treatment is a basic human right

What if, not degrading is to treat an entire class of citizens (chronic pain patients) as second-class citizens, and limit their access to the tools that allow them to lead a dignified existence?" — Catalina

In 2010, the International Pain Summit created a declaration which states that access to appropriate treatment of your pain is a human right — not an option, not a privilege. A right

Washington DC Capitol view on cloudy sky

The need to advocate

Talking to and explaining to people is very important for them to understand why I am taking this pain med and how it works. Even some doctors are not as educated about opioids as they should (be).” — Jutta

Protecting the future of pain treatment will require a concerted effort from people with chronic pain, as well as fearless advocacy by healthcare providers. Together, we can contribute to a more balanced view of opioids to help others like us get the treatment we need.

Share your story written on a sticky note.

What you can do

These meds help us live as much of a normal life as we can and in some cases, keep people alive.” — Niki

It’s important to share our stories of living with pain and the beneficial effects of opioid medication. Whether it’s advocating to your elected representatives or your family and neighbors, speaking out about opioids, refusing to be silenced, will create a more balanced dialogue.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.