Who Can Afford the Cost of Living with Chronic Pain?

Who Can Afford the Cost of Living with Chronic Pain?

Most chronic pain patients do not expect their lives to be a picnic. Chronic pain inflicts psychological and physical damage that can drain the resources of the strongest and most resilient among us. What most of chronic pain patients don’t always anticipate is the additional personal pressure created by the combination of the almost inevitable loss of income and the added expenses not covered by insurance or our savings. It is difficult enough to have been living a normal life to suddenly be inflicted with chronic pain, perhaps for the rest of your life. But to add more insult to injury, the concerns as to where we are to find the financial resources needed to obtain the correct equipment, treatments, transportation, medication, etc. adds unneeded stress to a difficult life to learn to accept.

It seems particularly unfair when one is unable to have the coverage for treatments proven effective for a particular condition. This adds stress which then negatively impacts a patient’s health. Here are some examples I have to face and I am sure many of you will be able to post other circumstances you have had to face:

  • I have to have most of my medications compounded to remove the ingredients of fillers that my body can’t metabolize – but due to being compounded, insurance offers no coverage. Although I could buy that drug with the regular fillers included with coverage, yet I totally have to pay out of pocket for my medication.
  • I need to travel many times to get to the knowledgeable doctors for my condition, EDS and there is no reimbursement for travel, lodging, food, etc.
  • And heaven help us trying to turn to safe alternatives in attempts to prevent surgery. We are traveling soon to Ohio to see a jaw specialist to see if I can avoid surgery by instead using a mouth guard to keep the jaw from subluxing/dislocating. Again, there is no coverage since it doesn’t match their insurance codes for the mouth guard, but yet surgery on the jaw would be covered.
  • Co-pays sure to add up, too. Living with my medical condition, Ehlers-Danlos, manual PT is a lifeline and a way to reposition the constantly subluxing bones. But for many of us, we have a limit of money for the year for coverage so we either suffer or have to pay out of pocket to address our issues.
  • Insurance does help with some of the equipment needed, for instance, a power chair. However, co-pays can get really exorbitant. For some, it becomes too much to take on so the person suffers without the needed assistance.
  • I happen to only be able to metabolize a few medications and for pain, all I can turn to is ketamine or cannabis. I am lucky to live in the state of Rhode Island that has allowed the medical program into our state since 2006. However, as you all know, we don’t get reimbursement to buy the product or grow it. Others get to go to a pharmacy and fill their script, while we have to grow, fight mites, mold, the waiting process of growing to get our help along with no help financially.
  • Our life and house have been dedicated to trying to keep me alive. The money spent to travel to twenty-four surgeries, equipment like the hospital bed, power chair, manual chair, oxygen converter, bi-pap machine, etc. gets overwhelming and makes me feel guilty to have been the reason our retirement money is being frittered away. The dreams of traveling are pretty much shot, vacations are rare to none and we have learned to make trips to doctors and try to make them like mini vacations, but this attitude doesn’t always work!
  • Even food costs me extra. I am so restricted with food sensitivities, that I have to buy good, unprocessed, pesticide-free healthy food and that cost adds up.

I am shocked at how expensive it is to be handicapped and living with pain. I try so hard not to dwell on it, but there are times it feels overwhelming, along with unfair. I didn’t ask to have my conditions, didn’t do anything wrong to be born with them, and have had to pay the financial price. And I am a lucky one for there are times we have been able to swing the cost of things I need. But having recently downsized and still awaiting the money from selling our farm, I have had to again make those hard decisions and weigh out what can wait and what has to be down now. It is not fun to know there are things out there to help but one can’t afford to turn to them. I hope that someday the medical system will function as it should. The healthy majority should accept the responsibility for ensuring that the best care is available to all as I am sure that the vast majority of individuals and families will at some point in their lives, need costly care. Treating the chronically ill with the best comprehensive medical care may in fact save money by. For example, minimizing the anxiety from conditions such as depression and ulcers helps to provide the chance to live the best one can with what they have been inflicted with.

How Can Others Help?

  • Consider donating, when you are able, to go-fund me pages of those trying to cope with medical expenses. It is amazing how small amounts do add up and help others.
  • Consider donating to someone trying to cover the cost of a service dog. Many reached out and helped me that I didn’t even know.
  • Consider paying it forward with information of resources that one might qualify for but are not be aware of.
  • Consider donating used equipment to a program that refurbishes them or give directly to one in need. A simple post on Craig’s list can be effective. Many of us are experiencing the loss of family and friends who have had medical issues and have equipment that others could make use of.
  • Consider seeing if you can donate flying mileage points to one that needs to travel for medical needs.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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I live off a teacher’s disability. My rent for a dumpy 1 bedroom in Denver Co is 30%. Each year I fill my taxes, I take off medical. I still OWE taxes. It cost anywhere between $300-500 to even get taxes done due to so many medical deductions. Believe me I dont make much! I am caught between a rock and a hard spot. Dont qualify for assistants by $30 dollars so I have to pay for everything. I’m drowning here. When will the government get real and change the limits on the poverty limits? I can’t work, I can’t afford to live either. Just one more way to punish the Chronicaly ill.

P.s For those who need dental work, contact Lifeline Dental in your state. A free dental program for handicap people.


My older brother is a CPA, and has done my taxes for over 20yrs. When I became disabled 20yrs ago, we could still itemize our taxes and deduct medical expenses. For those medical expenses, I tracked EVERYTHING; mileage for dr appts (local & long distance), pharmacy runs, even patient conferences out of town, parking, tolls, sometimes even hotels and meals can be included. You may not get reimbursed by insurance, but try to see if you are eligible for medical deductions on your taxes……it’s kinds like getting the money back. Every $$ you can save helps on limited incomes.


Please post this website- I use them all the time. I have Medicare D but the insurance companies have a wrong way of counting. I will pay $38 cash with GoodRx or $31 with insurance BUT for the stages/donut hole the insurance will say “oh you only paid $31 but the real price of that drug is $125” and that $125 is what counts toward the donut hole. I pay cash for all but one drug that is only on brand name.

This place is free and you can download the coupon or print it. I’ve also been able to buy drugs that my ‘insurance doesn’t cover’ at a reasonable rate.



As Jon Stewart recently made us all aware of, our gov’t doesn’t even care about funding the care of 9/11 First Responders.
So they certainly don’t and won’t care about the rest of us.

jerry esters

This is a human rights violation and a mafia controlling resources with a agenda (sustainable development ) Those who are unproductive and use more resources have to go ! On the population chart the elders are the largest and are living to long so i see this as a means to balance the chart and while the average age of life in the west is going backwards now ,it seems like elders are targeted allthough many younger people suffer as well ? Taking medications from the sick and afflicted is horrable and the narrative promoted by the controlled media is clever while other drugs cause so much more despair and loss of life and property like meth !! but people on meth dont eat and dont use drs and add to the prison system which is a private trust owned by shareholders which is a huge industry that profits, so they are good for business . I fear the wheelchair that is soon to come and i fear the loss of more medication that i need to be mobile and last i fear the day i cant go on ……….. Suing the C.D.C. and the current insurance companys might help but how long would that take ?? The only hope i have is that the next dictator for the UNITED STATES INC will abandon this narrative and return the management of health back to the sovereign people where it belongs .ty


Gail H
I’m so sorry for your situation. This is exactly what I’m talking about. I read the diagnosis book for United & ALL the ones I read were incorrect. I’m a psychologist, if the psych conditions are wrong…no Psychologist will match them & …violà.
The no taking valium with opioids is pure insanity. It can’t harm the patient who has a tolerance to both, and valium boosts the pain meds & vice versa, making them more effective when taken together.
THC & CBD increases the analgesic affect of pain meds x6, so perhaps that’s something you could look into, it also acts synergistically as valium & pain meds do.


Everyone freaks over the word “socialism”.
I’d like to point out how much healthier they are on the whole. This is simply because it doesn’t benefit anyone to have people sick, when they could possibly be working, so the health system’s are designed to keep people healthy.
The US has one of the worst healthcare systems of the civilized world. The highest in infant mortality & lowest in education, life expectantcy, & life satisfaction.
Greed & medicine simply do not mix.
The surgery I need was approved by the FDA in it’s simplest form 7 yrs ago, in Germany it’s done in much more complicated form for the past 30 yrs.
The US is totally brainwashed ” We’re the best at everything”…it simply is not true.
I know this doesn’t help us individual’s born here, but from Denmark to Switzerland, etc all rate higher in every single way, & the US Healthcare system is designed to keep people broken & sick. The FDA is made up of people who accept bribes to get drugs,etc approved, the government in all forms does not support the ill.
The government itself screws over Veteran’s, the ill & injured citizens alike.
At LEAST 10% of suicides are CPP’s. I know it’s much higher than that.
The fact the government continues on this path proves they meant to do this, & will continue to do it.
They TOLD us they would do it in 1993. It’s plainly stated in a public document ” DEPOPULATION for SUSTAINABILITY”. You want to reduce the population, logically who goes 1st? Furthermore, their actions can be traced back to….1993.

Just a thought.
Blessings to all CPP’s.❤✌


Jason George:
I was right with you for the first paragraph, then you descended into utter [edit] bigotry. “It sucks being white and poor. At least Hispanics and Blacks have government houses and apartments to live in.”
Try crawling out of the 1920s, for God’s sake. [edit] like this makes me ashamed to be human.


I, too, look forward to your writings. You are well spoken and reliable in what you share. Thank you.

Thomas Wayne Kidd

I appreciate you very much Ellen. God bless you and keep you and husband in His loving care.


Please think long & hard before having jaw surgery I have tmjd jaw 20 years ago I had surgery on each side to fix the problem, it didn’t work but I endured eating only soft foods & getting thru the severe pain episodes for 10 years then had surgery on each side again where a piece of my rib from each side under breast was taken to form lower jaw , it didn’t work I’ve been left in severe chronic pain, I now weigh only 73 #s used to weigh 105#s please once they open ur jaw for surgery you cannot go back try whatever you can short of having surgery. I am on pain patch but has been lowered to almost nothing my quality of life severely depleted.


I am sick and tired of pain I’ve been in pain since 1999 I’ve had 2 back fusions and a neck fusion yes I go to a pain clinic 500 miles from my house every month I need at least 4 pain pills a day now I only get 3 and I am hurting bad from just cutting 1 pill out a day If they cut them again I will go to the streets to get anything that stops my pain heroine etc I may die doing this but it’s better than living in acute pain constantly if that doesn’t work then suicide is sounding too good for me know Please get the government out of my personal life this is socialism which I thought this country would never do to its people but it’s coming and not only me many will be finding drugs on the streets I refuse to just lie in bed the rest of my short life so I tasked my pills as directed so If they cut me down anymore I will have no quality of life so that’s when I must take chances with street drugs If I die from them I have already instructed a power attorney to sue the government for my death and give the money to my family

Debra Johnson

Two things that might help: 1. Physical Therapy. Often if the physical therapist can give a reason why you need additional sessions your insurance will cover. 2. Sometimes you can talk to your insurance company (be persistent) and you might get them to pay for things not normally covered (like your mouth guard). A letter may be needed, in your case to explain the cost of surgery vs the mouth guard. Many companies have a process for looking at things not normally covered and I’ve seen them come through and pay for them.


United Health Care has been very difficult to deal with. They refuse to cover Extended Release meds for chronic pain. The financial impact on top of the pain is inhumane. The insurance company just doesn’t care. Once again ….all about money.

Gail Honadle

Travel alone is expensive worse when you live Rural, hard ware in the forms of walkers, wheelchairs, Hearing Aids, Eye Glasses, extra Dental work beyond the norm. This new lower denture Is DESTROYING my mouth. It’s got RED DYE in it, besides who knows what synthetic materials. No one can answer that, not even the dentist. I’m Red Food Dye sensitive. My mouth feels like I’m eating Ghost Peppers it burns that bad. Specialized diets that become BORING, limited fluids. There is a Gastropresis Diet, Diabetic Diet, Diverticulosis Diet, Allergy Avoidance that narrows it down more. With GP you don’t have the luxury of eating many small meals a day the 2 you do eat leaves you in GI pain. FMS affects Dental and Vision, as do medications. Then the tole on your body is another aspect that is not factored in, long waits, uncomfortable chairs, COLD rooms. PCP’s use to do little things like remove Ear Wax, now you have to see a Specialist for 5 seconds of work, 2.5 hr round trip and a wait your turn.

Fighting with your insurance company over a NEEDED medication because it’s the only 1 that works and DoD is removing it from Formulary coverage. Or the only 1 in it’s class. When your Medical Ins is Medicare/Tricare Life (Career Military Ret over 65) You have NO RIGHTS of APPEAL when they change the formulary. Being high sensitive to Dyes, Seafood, and meds makes your Life H. to start. Each change is Russian Roulette on meds. 14 reactions to Neuropathy/FMS drugs none of them nice. What works 10 Mg Valium per day, you could use 30 mg, but FDA has that regulated to 20 as a few people reacted, but no numbers are given. You can handle that 30 mg no sweat. Or stay with the 20 mg and add in 5 mg NORCO 3 times a day. Your told you can’t have Both. YOU can Function is LESS PAIN. Actually sleep a few hrs, have less Fibro Fog, Swimming through Pea soup memory.

WANT HIGHER TAXES? LESS CARE? https://www.foxnews.com/opinion/alfredo-ortiz-house-ways-and-mean

Debra Yates

Thank you so much for sharing your truth. I look forward to your articles. I admire & learn from you and your husband. God bless.

I get so sick of living in severe pain everyday, can’t sleep at night. All because our Government think they need to regulate peoples medication. When alcoholics drink as much as they want to beat their wife and kids run over innocent people and drug attics get street drugs all they want.
I’m one emergency away from being homeless. It sucks being white and poor. At least Hispanics and Blacks have government houses and apartments to live in. We have to live in run down trailers with $400-$500 power bills in the Winter $150-$250 in the Summer with no Government help. I need surgery but my insurance copay is $13,000 I don’t even get that in a year on Disability. I pray and yearn everyday for Jesus to return and take us away from this Greed stricken Earth. I need help but I get turned away from every where and everyone.