by Kristin Nador/@KristinNador
This summer Keeper Hubby and I did something we have done at least ten times during our marriage. We prepared for another surgery for him. He’s been diagnosed with a condition called degenerative disc disease. No one knows why he has developed this condition at such a young age: it first showed up when he was about 32. The constant vibration of serving on military helicopters in both the Army and Marine Corps as a helicopter crew chief may have contributed to it, but there’s no definitive proof.
As we sought an answer to the slowly worsening pain in neck, arms, back, legs and feet, we were referred to doctors all the way from prestigious Emory University Hospital to local pill mills and steroid clinics (that we ran from as fast as possible). We learned terms like cervical fusion, spinal stimulator implant, titanium spinal cage, pre-existing condition, and annual deductible. We have been dealing with these issues for 20 years.
Now we are in recovery mode again. Going into greater pain through surgery to reduce pain is a hard place to force yourself to go over and over again. Hubby has experienced some better days. He’s been able to start a simple walking plan again. But he still has more bad days than good. As we have found, medicine is not always an exact science, because the surgery has had some complications, and so far has not accomplished what it was supposed to.
With better medical care and longer lifespans comes people that survive, but live lives of quiet desperation as pain fills their days. More than 100 million Americans suffer from chronic pain according to a study done for Congress by the Institute of Medicine in 2011. The study committee also recognized that federal efforts to combat drug abuse have lead to “extraordinarily burdensome” prescribing practices for people with true chronic pain issues.¹
¹Source: Institute of Medicine: “Relieving Pain In America: A Blueprint For Transforming Prevention, Care, Education, and Research”
Types of chronic pain run the gamut: pain from cancer and cancer treatment, arthritis, multiple sclerosis, bursitis, low back pain, neuropathy, TMJ, sciatica, Gout, Crohn’s disease, fibromyalgia, migraines, Lyme disease, depression, other mental illnesses, PTSD, lupus, recovery from car accidents, military service injuries, severe burns, and sports injuries just to start the list. Long-term chronic pain can literally change your brain wave patterns and lead to depression, anxiety, which can sometimes result in self-medication through drug and alcohol abuse. A 2015 study by the University of California – Irvine found that brain inflammation caused by chronic nerve pain alters activity in regions that regulate mood and motivation, suggesting a biophysical link between chronic pain and depression.
Many times pain management is a matter of trial and error. Medication, physical therapy, surgery, alternative therapies, and nutrition are prescribed, tried, and tried some more, so a person dealing with chronic pain can feel like a guinea pig.
Maybe you or someone you know suffers from chronic pain, whether it’s from something obvious by looking at the person, or whether the suffering is not self-evident on the surface. Here are six lies they might tell you:
Six Lies Chronic Pain Sufferers Tell
I’m doing okay.
Chronic pain sufferers don’t necessarily feel comfortable (no pun intended) rehashing the same medical issues, so it’s easier to just say they’re okay. They notice, too, when they do share, how people’s eyes glaze over after a while. Most people are only reciting daily niceties when they ask ‘How are you?’ They don’t really want a rundown of all the problems a chronic pain patient deals with. Even though once in a while it might help them to share it.
It doesn’t hurt that bad.
It does hurt. It hurts a lot. Even if they don’t say so, you can spot it in pained breath and squinted eyes if you look hard enough. Yes, pain meds can help, but they don’t stop the root cause of pain, only let the person tolerate it so they don’t go insane.
I’m hopeful about the future.
Statistics bear out that anywhere from 10 to 70 percent of suicide attempts involve those with some type of chronic pain condition. It’s difficult to be hopeful when pain fills your body and mind every waking moment, and sometimes in your sleeping ones, too.
I like the way my doctors are treating me.
Doctors who employ pain management techniques are no different than any other kind of doctor. Some are good, some are not. Many people don’t have a lot of choices in their medical care and have to take what they can get, no matter the quality, despite what politicians would have you believe. Ask a retired veteran on Social Security what kind of choice in care he gets. Ask someone whose only choice is a bare bones budget Medicaid payer-heavy clinic. Sometimes pain patients know there is nothing more a doctor can do for them then manage pain. They’ve reached the limit of treatment. They just want acknowledgement of their pain. And the medical establishment is a business. Bedside manner is a thing of the past. Factory assembly line tends to be the order of the day. If a pain patient finds a skilled doctor with an empathetic attitude, they hold on to them for dear life.
I’m not too worried about how I’ll pay for my treatment/medicine.
We went into $40,000 debt while living on savings and credit for two years when Hubby couldn’t work. We’re still paying off debt from hospital stays that happened between active insurance coverage. And we are not that unusual. In 2013, a study by a financial health think tank determined that the number one reason people declare bankruptcy is because of medical debt. A study in 2014 by the same group declared that one in five Americans struggle with medical debt.² Insurance coverage also does not mean you do not have to pay bills. If a surgery costs $200,000, and your insurance covers 80% it’s a big help, but you do the math. Chronic pain patients are constantly trying to figure out how to pay medical bills, especially since a majority end up relying on disability for income. It’s on their minds all the time.
²Source: NerdWallet, Medical Debt Crisis Worsening Despite Policy Advances, 10/8/2014
My condition doesn’t affect my social life and relationships that much.
Pain changes your entire life. You insulate yourself from new relationships. If you have developed depression as a by-product of your chronic pain, you aren’t interested in new experiences. You may suffer from impatience, angry outbursts, and despondence, driving even your loved ones away from you.
People with chronic pain don’t want to constantly be seen as needy or requiring special treatment, or handling with kid gloves. They don’t want to keep starting from zero in their treatment plan. They just want to feel like they are being heard, like everyone does. Here are seven truths people with chronic pain issues need you to know:
7 Truths Chronic Pain Survivors Want You To Know
It’s not ‘in my head’. I am not just ‘hypersensitive’.
Chronic pain patients have been to more doctors than you can count on two hands. They have had tests on every system in their body, or they are in the midst of the process. If you are a new person in their life, or even a new medical person, just because they don’t ‘look’ like they are in pain, doesn’t mean they aren’t. When you insinuate that it’s really ‘not that bad’, you denigrate them, as this is their truth 24/7.
If I am not ‘up’, it’s not anything you, or anyone else did.
Chronic pain sufferers struggle to keep a cheerful attitude. In fact, they may become glum, surly, and downright antisocial. They are not striking out at you. Pain is a constant emotional distraction. They are not trying to hurt your feelings. Sometimes hurting people hurt people.
I would really rather be doing that activity than sitting at home.
Don’t take it personally when a person with chronic pain doesn’t want to participate in regular family activities or social gatherings. They are mustering up all the ‘best face’ they can just to show up. And if they don’t show up, they are not trying to treat you poorly. They literally don’t have the energy and/or can’t stand the pain.
I feel guilty about making others do things to make up for what I can’t do.
Depending on the type of pain, many people lose the ability to complete simple daily tasks. Where they used to be a regularly independent person, now they must rely on others to help them. This is a big hit to self-esteem, especially if it involves losing the ability to be the breadwinner of a family. Try to find ways to help them feel that they are contributing, but don’t be condescending about it.
Navigating the medical system can be maddening on a regular basis.
Keeping up with insurance statements, verifying coverage, making sure all the medical people do their jobs (which regularly DOESN’T happen), paying bills, and getting to appointments is a full time job in itself. Combine that with forgetfulness and the fog which can come with typical medications, and things can end up being extremely difficult.
I am not an addict. I am a survivor, and don’t appreciate being treated like a criminal.
Because narcotic medications are the typical in treatment plans for chronic pain, patients get lumped in with illicit users and have to jump through many difficult hoops to receive their legal prescriptions. States have made laws to stop the out-of-control illegal sale and abuse of prescription drugs, and in their zeal forgot about those who truly benefit from them and have a legal right to be treated with them. Without regular pain management medication, many patients could not function on a basic level. Doctors, pharmacies, and other medical professionals need to have greater empathy education and less open contempt when pain management patients present their medication needs.
Sometimes I don’t want to live like this anymore.
Please don’t think chronic pain sufferers are being dramatic or trying to get attention if they talk about wanting to end their lives. Psychological assessment is a normal part of chronic pain treatment because of the suicide statistics discussed earlier, as well as other psychological impacts due to constant pain levels. Please take talk of suicide seriously. Insist your loved one speak with one of their medical team immediately. Go with them. Take them to the nearest emergency room if you have to. Even though they can’t articulate it, they are counting on you.
As a family member, caregiver, or friend, it’s hard to find the right balance to help a chronic pain survivor have more good days than bad. But if we can try to put ourselves in their shoes, it can go a long way to helping us be good advocates. Keeper Hubby and I have been put to the test in our relationship, but we’re making it through, one day at a time. Sometimes I get frustrated that we have a new ’normal’. I feel encroached on because these tasks take up my creative energy. I sometimes feel guilty about all these different feelings, but compared to Hubby’s struggle my inconveniences are nothing. In spite of all his troubles, he still makes it his mission to make ME laugh every day, tells me how beautiful I look and how much he loves me. That’s why he’s a Keeper.
Are you a caregiver? November is National Caregivers Month. Blogger Cathy Chester of An Empowered Spirit offers resources and encouragement with her post Random Acts of Kindness for Caregivers During National Caregivers Month
Are you a chronic pain survivor? Here are a few personal blogs to encourage you on the journey:
Do you deal with chronic pain? Share your story with us. Do you have any tips for friends, family, and caregivers to help chronic pain friends through their journey?
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