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.