The media’s coverage of the opioid crisis has opened the conversation around prescription pain medication in the U.S. but fails to adequately cover the concurrent pain crisis faced by those with chronic and irretractable pain. I was inspired to write this post through the pain patient perspective and reflect the obstacles that my mother as a chronic pain patient and myself as her health advocate have encountered.

If you are a chronic pain patient on opioid therapy you can expect to experience some, if not all, of the following side effects:

• Abandonment by your primary care doctor
  You may find that your doctor is faced with mounting pressure and scrutiny from the DEA and is desperate to stop prescribing opioids out of fear of losing his/her license.

• Difficulty finding new doctors
  You may find that doctors are leery of taking on new patients with chronic pain issues; some may decline to work with you altogether. You may experience insistent lectures from each new doctor about your medications before even having the chance to introduce yourself and discuss your health history. If this occurs, you may choose to continue searching for a physician willing to treat your complicated medical condition which may lead to increased likelihood of being accused of doctor shopping.
• Forced tapering
  You may find yourself forced to begin rapidly lowering your pain medication dosages without having addressed the underlying cause or finding an alternative pain management tool. However, it is not uncommon to be cut off suddenly with no warning and sent home without instructions to manage the withdrawal symptoms. 
• Refusal of care at the ER
  If you are abandoned by your primary care and your prescription is running out, your insurance company may direct you to the ER for assistance with your medications to mitigate the risk of withdrawal symptoms. However, it is not uncommon to discover that many ERs have posted signage stating they will not treat chronic pain patients. You may instead receive a handout directing you to the local substance abuse center.
• Chastisement from pharmacists and refusals to fill your pain prescriptions
  You may discover that pharmacists have the right to refuse to fill prescriptions based on personal beliefs or suspicion. A simple call to the prescriber could easily assuage any fears, but this doesn’t always happen.
• The “look”
  You may come to know the “look” all too well when listing your current prescriptions to a new doctor, or dropping off your prescription when a new pharmacist is working. The “look” indicates they’ve already made their conclusions about you without knowing a single detail of your medical history.
  
• Iatrophobia
  You may begin to experience iatrophobia, or fear of doctors. How can you not after you’ve been dropped, accused of being an addict, and sent home with no pain medication? How can you trust your doctor when in response to your pleas for help managing your pain he replies, “It’s not like pain can kill you”. You may experience anxiety as each appointment approaches, not knowing what ultimatum will come next.
  
• Shortages of your medications leaving you unable to fill your prescription
  You may have to run around town (if you’re not already bedridden in pain) and ask other pharmacies if they have your medication in stock. But be careful–you may find that this causes them to red flag you and creates issues when you try to fill your prescription next month.
• Dropped coverage for your pain medication by your insurance company
  You may receive a letter from your insurance company announcing that they will no longer cover your opioid medications. Hopefully, you can afford to pay out of pocket.
• Mandatory urine testing every month
  You may find that your pain management (and sometimes your primary too!) will start to require a urine test every time you come in. Often times this is at your own expense or is only partially covered by your insurance company.
• Mandatory physical therapy and psychiatric appointments
  You may find that your doctors require both of these in order to continue your opioid therapy. Again, this may often be at your own expense or only partially covered, with the co-pays adding to your increased monthly expenses for all the new specialists you’re required to see.
• No refills during natural disasters
  All other medications can be filled early in anticipation of pharmacy closures due to national holidays or hurricanes, snowstorms, etc. to avoid leaving patients without their medications–except pain patients. You’re just shit out of luck. If this occurs, it is not recommended that you ask what you’re supposed to do if you start experiencing withdrawals when the city is at a standstill–because put simply, no one cares.
• Unsolicited comparisons from friends about their experience with opioids for acute pain.
  You may find that the understanding among your well-intentioned loved ones only goes as far as what the media is reporting on opioids or their own personal experience with acute pain. “Opioids are so BAD for you. I took some after surgery and was constipated. You’re really just better off without them.”
• Social isolation
  As your doctor reduces your pain medication without addressing the persisting pain, you may find it difficult to maintain friendships and familial obligations when you’re housebound or bedridden due to pain. You may find a complete lack of understanding and empathy from friends and family. “You’re not better yet? You look fine.”
• Suicidal thoughts
  You may find that as your medications are tapered or completely discontinued your mobility, functionality, and agency are ripped away. You may not be able to leave your house due to the pain. Depending on your circumstances you may have lost the ability to work and support your family. You will likely experience skyrocketing monthly expenses from the drop in your insurance coverage and all the new required tests and specialist co-pays. You may find that your friends have disappeared–you’re just a bummer to be around. You may discover that you can’t talk openly with your doctor because while you may be completely bedridden, for him this is preferable to writing another opioid script. It may appear that there is no end in sight to your suffering, no compassion to be found. You may start to think…
  This is no way to live.
  Is anyone listening?
  Does anyone care?
  You may notice another news story about an overdose related to illicit fentanyl.
  You may wonder if anyone will report on the suicide of a pain patient abandoned by the medical establishment.
  Will anyone listen?
  Will anyone care?

If you are a pain patient or pain patient advocate struggling to get adecuate treatment for your condition visit DontPunishPainRally.com to join the community fighting for reform. Rallies are planned around the country March 20, 2020.