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Tag: Chronic Illness

Bruce, What Can I Do to Help?

helping bruce

Yesterday, I wrote a post titled, Depression: It’s the Little Things. In this post, I detailed my present physical and psychological struggles. I mentioned a few of the things aggravate my depression. Sgl asked:

Is there a corresponding list of little things that make you feel better? Particularly ones that we, your reading audience, can do?

What a thoughtful question. Let me see if I can give this question the answer it deserves.

As any depressive will tell you, battling depression is a lonely journey, one in which, for the most part, you are on your own. The same can be said for chronic illness and chronic pain. People want to say and do something — anything — to help their suffering family member or friend. However, people who want to help often make matters worse. It’s far better to say few words, and just let the person know you are there for them, if need be. Unfortunately, well-wishers wrongly think depressives just need positive mental reinforcement — think good thoughts, and all will be well. I know, for me personally, when I see clap-happy seals coming my way, I want to hide. I am, by nature, a pessimist and a realist. I usually accept things as they are, so I don’t need to hear “happy” words to make me feel better. That said, I don’t have a problem with observant people saying, “what can I do to help?”

It helps to understand the mental make-up of depressives and chronic illness/pain sufferers. I tend to be a self-sufficient, pull-myself-up-by-my own-bootstraps kind of person. If I want help, I will ask for it — but I will rarely, if ever ask. This puts my wife, children, and friends in a difficult spot. They typically stand on the sidelines watching me suffer. They know I NEED help, but knowing that if I wanted help, I’d ask for it, they typically say nothing. There are times when I am silently begging for their help, but too proud to ask. Yes, this is a flaw in my character, I suppose, but this is who I am. I am genuinely unsure as to how people close to me should respond to my needs. They know I likely won’t break down and ask, so there has to be a way to meet my needs while at the same time not destroying what little self-worth I have. I do know that the only thing worse than how things are for me presently, is for me to feel “helpless.” I don’t do “helpless” well, but, of late, I am learning that I can no longer be self-sufficient Bruce. Not if I want to get out of bed, that is.

I am at a place in life where I do need help — often lots of it. My “to-do list” is so long, that I am thinking that it might be better for me to just light a match to the list. While doing so would be cathartic, the things that need to be done would remain undone. From website issues to home remodeling/repairs to yard work to countless other projects, my to-do list gets longer every day. I have on more than a few occasions called my to-do list a tyrant.

Every day, I have a window of time in which to get things done. Sometimes, that window is a few hours, and on rare occasions, I might have a six- to eight-hour window. All praise be to Loki! One pervasive problem that has afflicted me for decades is that I love to work, so once I start, I don’t want to stop. Several weeks, ago, Polly left for work at 5:00 PM, just as I was sitting down to work in the office, to do some writing, pay the bills, and reorganize stuff to align with my OCPD view of the world. Nine hours later, I was still working away. Man, did I get shit done, right? When Polly came home from work, she was upset that I had spent so much time “working.” My feet looked as if I were eight months pregnant, and I hadn’t taken my pain meds. Busyness is a great pain reliever — until you stop, anyway. Polly said nothing, having seen his movie many times before. The next day, I couldn’t even get out of bed, and it took two days before I could sit in the office and work again. Did I learn my lesson? Hell no. This is just how I am, and try as I might, be it working in the office, the garage, or the yard, I tend to push myself too far. Carolyn, my friend and my editor, will remind me when I say am going to do this or that, that I need to take it easy, to pace myself. She truly has my best interest at heart. I usually tell her, “I’ll try,” complete with a few smiley emojis, and she’ll respond, “no you won’t.” You see, she knows me, as do Polly and my children. After I stopped blogging for the nth time years ago, Michael Mock — another person who knows me quite well — told me that I was just one of those people who crash and burn and then rise again from the ashes. He, of course, was right. That this blog will celebrate its sixth anniversary in December is amazing — and unexpected.

I really haven’t answered Sgl’s question, have I? I am not sure I can. I taught my children to pay attention to the needs and circumstances of others. I was never much for praying over helping people in need. Go out to the church parking lot, look at the cars, and see which one needs new tires. Don’t pray, just act on the information you have. In other words, buy the needy family a new set of tires. I proudly watched my children (and Polly) put this into practice over the years, helping countless neighbors and workmates. I believe that what goes around comes around. Pay attention to others. Need is everywhere you look.

For my family, they can see my needs. I know I have pushed them to the sidelines, too proud ask for and accept their help. I am asking them to ignore the old curmudgeon and help anyway. Ask to see the to-do list or walk through our home and make a list of things you think you can help me (us) with. I promise, I won’t say no.

For my digital friends, the faithful readers of this blog, the challenge is different. If I don’t tell you what I need, you won’t know. You have no way of peering into my home and seeing what needs I might have. Sometimes, loving, kind readers make donations or commit to monthly Patreon support. Money is always appreciated. Since March 2020 – fuck you Coronavirus — one-time donations have dropped 90% and I have lost a couple of Patreon supporters. While any financial support provided by readers is greatly appreciated, I’m content with whatever the donations are month to month. I know I am never going to become rich and famous from this blog, but donations do help pay site expenses and provide a small stream of personal monthly income. That said, I am never going to beg for money.

I still haven’t answered Sgl’s question, have I? Damn, Bruce, quit circling the runway and land the plane. Okay, okay, I hear ya.

Most of all, I would ask that you continue to read my writing and comment if you are so inclined. For those of you who have the patience and skill to interact with Evangelical commenters, I would appreciate you answering zealots when they come knocking. I can be a bit short-tempered these days with some Evangelical commenters, knowing I probably cut off discussions that others might find helpful. I am more than happy to let others handle Evangelical commenters (unless they are directly asking me a question). Some of you are already helping with this, and I hope you will continue to wield the sword of reason, skepticism, and intellectual inquiry.

I could use some help on the backside of this site: approving comments, deleting comments, fixing broken links, to name a few. Broken links are a big problem. I currently have over 800 broken links. I “intend” to fix them, but alas the more I “intend” the longer the broken link list becomes.

I still want to start podcasting, whether separate content or audio versions of my writing. Last year, I bought all the necessary equipment to record podcasts. What I need help with is the visual design and formatting. I want to put the podcasts on video sites such as YouTube and audio sites such as Spotify, Apple, etc. I plan on purchasing monthly podcasting hosting service.

If you are interested in fulfilling these technical needs, please email me via the Contact form. I am not lacking skill-wise in being able to do these things. What I have is a time problem. I want focus my time on writing. Any help on the technical, non-writing side of things allows me to devote more time to my writing.

Carolyn has volunteered to help answering some of the emails I receive. I need to make a form design change to make this happen. Carolyn continues to edit my prose, all for the princely sum of $0.00. And readers will be pleased to know, that my book project is finally in its early stages. There’s a bit of pragmatism pushing the book project. I am not well physically, and I could die before I finish my book, so it is in my best interest to “git ‘er done.”

Your email, comments, and texts are always appreciated. I am interested in your lives too, so please stay in touch with me. If you would like to exchange texts with me, please send me your cellphone number via the Contact form. Sometimes, just hearing from someone: a text, an email, a photo, a funny joke, can push my mind into a better place. Don’t underestimate the power of a stupid cat meme.

Your love, kindness, and support are greatly appreciated.

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bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Depression: It’s the Little Things

nope

Thank you to everyone who has contacted me in recent months, asking me how I am doing, health-wise. Hopefully, this post will catch everyone up on my current status. Not a cheerful, “ain’t life grand” post, but I do try to be honest and forthright about my health.

I have suffered from depression most of my adult life, especially since being diagnosed with fibromyalgia in1997.

Over the past three decades, not only have I had to contend with fibromyalgia, I’ve had to deal with osteoarthritis and neurological problems (peripheral neuropathy) that are ever so slowly robbing me of my physical strength and ability to walk. My cane and wheelchair are never far away. Some days — most days — are cane days, other days are wheelchair days. Some days are cane and wheelchair days — days when I want to use my cane to club the thoughtless people who walk in front me, try to get in front of me, or just stand there ignoring the fact that I can’t get around them. If illness and debility have taught me anything, it is that some of my fellow humans are narcissistic, self-absorbed assholes who have no time or empathy or time for others.

Every day is a pain day for me. Some days, the pain is manageable and tolerable, and it fades into the background as I write or focus on other things. Other days, the pain is standing with both feet on my neck, threatening to turn me into a weeping, pathetic, suicidal man. Most days, are a balance between these extremes. I take my pain medications and muscle relaxers, try the best I can to function, hoping to live for another day.

Along with fibromyalgia, osteoarthritis. neurological problems, and chronic pain, I’ve had three bouts with skin cancer, my gallbladder removed several months ago, a labrum tear in my shoulder, torn menisci in both of my knees, severe lower back and hip pain, diabetes, and high blood pressure. Oh, and now, my red blood cell counts are low — very low. I have been on iron supplementation for the past month. I had bloodwork done today, and I have two doctors’ appointments tomorrow. One appointment is with the orthopedic doctor to see if the problem with my lower back — the disc space at L5 — has worsened, and then an appointment with my primary care doctor. If my red blood cell counts have not improved, I will have to have a colonoscopy and an endoscopy to check for internal bleeding. Since having surgery, I have had nausea, loss of appetite, and dull headaches. I have my eyes checked, nothing abnormal there. All told, since last Thanksgiving, I have lost 70 pounds. And not because I was trying to do so.

Healthwise, my plate is full. That said, I accept my life as it is. I am a realist. I don’t try to delude myself into thinking I am a young buck running through the forest in pursuit of a doe. I am a loving, kind, passionate man who, due to genetics, luck, environmental exposure, and personal lifestyle choices, has a body that is dying at a faster rate than others my age. I am a high mileage automobile that from a distance looks good, but closer inspection reveals a lot of wear and tear.

All of this I embrace and own. It’s my life, I have to live my life on the terms dictated to me by my body. Thinking happy thoughts, putting mind over matter, pretending things are different from what they are, provide no help for me. Even when I was a young man — a healthy, strapping, strong man who hunted, hiked, cut wood, and could bend the world to my will — I tried to see things as they are.

Having my father die at age forty-nine and my mother commit suicide at age fifty-four tend to give me a particular perspective. Visiting sick and dying church members in the hospital reminded me that life is short. My experiences with the sick and dead have certainly shaped my understanding of life, and I know the path I am on, healthwise, leads to a fiery furnace. No not Hell, silly. I am going to be cremated after I die.

My counselor has told me several times that it would be unusual for a person with the health problems I have to not be depressed. He knows I struggle with suicidal thoughts, but he also knows that these thoughts are driven by the chronic, unrelenting physical pain. Through kindness, compassion, friendship, and support, he keeps me from falling down the rabbit hole, never to be seen again (though thanks to the Coronavirus Pandemic, I have not seen him in nine months).

As many depressives will tell you, it is often little things that worsen their depression. For me, it’s not the chronic illness and unrelenting pain . . . it’s the little, unexpected things that push me towards the abyss. Things such as:

  • Falling and wrenching the shoulder that has the labrum tear
  • Constipation
  • Getting out of the house so I can take photographs, only to find out I left the SD card in the card reader
  • Emails and texts to friends who never respond
  • Health advice from people I have repeatedly asked to stop pretending they are doctors
  • People asking me, have you tried this, that, this, that, this, that, this, that, this, that, this, that . . .
  • Dropping a dish on my foot
  • Stubbing my toe in the dark on something that is not where it is supposed to be; something left on the floor by one of my grandchildren
  • Nothing in the refrigerator I want to eat
  • No Internet
  • The printers running out of ink or toner
  • Microsoft screwing my desktop computer with an update, and now I have to spend precious time “fixing” it
  • Needing a quarter for a shopping cart at Aldi and not having one
  • The batteries in the remote dying just as I get comfortable in my recliner or bed
  • Making an error in the checkbook
  • Store clerks who treat me as if I have a disease, or worse yet, treat me as if I don’t exist
  • Finding out last night’s dinner stained my favorite shirt
  • The DVR not recording a show I wanted to watch
  • No milk and I want to eat a bowl of cereal
  • People not wearing face masks
  • One of my children borrowing my tools one month, one year, five years ago, not returning them, and NOW that I need them, they are nowhere to be found
  • Looking out the back window at our wild, overgrown yard, hearing the taunts of the trees, bushes, and weeds, saying, WE WIN!

Silly stuff, I know. But, here’s what you need to understand: for those who live with chronic illness and pain, there’s a cumulative effect. Their lives are already filled to the brim with the struggles that come from their illnesses. It’s often all they can do to just get out of bed and live another day. So, when small insignificant things are thrown on top of their overload, it can and does bring them crashing down.

Try to remember this the next time you think your suffering friend is overreacting to a small matter: it’s not that one thing that is the problem; it’s the accumulation of numerous small things that have left your friend or loved one curled up on the bed wanting to die.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Nerve Pain: Please, Don’t Touch Me

dont touch me

Many Fibromyalgia sufferers have days where they can’t bear to have someone touch them. The other day, Polly came into my office and started to put her hand on my shoulder. I barked, DON’T! Polly knows when I say this that I am having a “please don’t touch me” day.

Most days, the nerves in my skin are quite sensitive. This sensitivity is part of the problem I have with chronic pain. I hurt everywhere, from head to toe. It has been over a decade since I have had a day where I could say, I feel pretty good today. Fibromyalgia primarily affects the muscles. I also have osteoarthritis, along with chronic low back pain. Fibromyalgia+osteoarthritis+back pain+nerve pain=unrelenting chronic pain. Fibromyalgia+osteoarthritis+back pain+nerve pain+narcotic pain medication+muscle relaxers=less unrelenting chronic pain.

garfield pain

As anyone who lives with chronic pain can tell you, pain medications do not make the pain go away. They lessen the pain spikes and provide a break in the pain cycle. When normally healthy people take narcotics to alleviate pain, they often feel a buzz from the drug. Some people become quite loopy. That’s not how it is for people who are on a long-term pain management regimen (as I have been for over fifteen years). Unless the chronic pain sufferer takes narcotics like Dr. House — by the handfuls — it is unlikely that they will feel a buzz or become loopy. They will feel a lessening of the pain, a break in the pain cycle, but otherwise, they will be as normal as normal is for them.

On “please, don’t touch me” days, the pain medications don’t work like they normally do. I am unsure as to the physical reason for this, but I know that I can double my pain medication on a “don’t touch me” day and it has little effect. I just have to tough it out, knowing that the next day will be maybe, I hope so, likely better.

This past Friday, Saturday, and Sunday, I worked in the office, took care of some remodeling projects, cleaned house, and trimmed trees and bushes. I worked far longer and harder than I should have, but since I am unwilling or unable to stop doing so, I must live with the consequences. And, boy, oh boy, do the consequences roll in like a freight train! Today, and probably several more days thereafter, I will have to contened with pervasive, unrelenting nerve pain. I am definitely in a “don’t touch me” phase of life.

Why I am telling you this? Perhaps you know someone who lives with chronic pain. If so, perhaps this post will give you a little insight into what they might be going through. Perhaps you have seen them grimace when someone touches or bumps into them. They might be having a “please, don’t touch me” day. If they are anything like me, they will endure the pain for the sake of not appearing crabby or difficult. Chronic pain sufferers want to be seen as “normal”, and often they will silently endure the pain unintentionally inflicted on them by others.

People who know me well will generally ask how I am doing before hugging me or shaking my hand. (COVID-19 has lessened such close encounters.) Some friends and family members know how to read my face. As much as I try to hide the pain, it reveals itself in my face and eyes. I normally have sparkling blue eyes, but when I am in a lot of pain, depressed, or physically having a difficult day, my eyes will turn gray. I don’t know WHY my eye color changes, I just know it does.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Fireworks and Medical Marijuana in Ohio

seniors smoke pot
Cartoon by David Granlund

Ohio has some strange laws when it comes to fireworks and medical marijuana. Ohio’s neighbor to the north, Michigan, is much more friendly towards fireworks and marijuana than the Buckeye state. Can’t beat Ohio State in football to save their lives, but Michiganders love smoking dope and shooting off fireworks.

Ohioans are not permitted to use fireworks, even though this law is routinely ignored or rarely enforced. We can buy fireworks in Ohio, we just can’t use them. The Ohio border with Michigan is littered with fireworks stores. Ohioans frequent these stores, buying large quantities of fireworks for their Fourth of July celebrations. Purchasers have to state that they will transport the fireworks out of state within forty-eight hours (Ohio Revised Code 3743.65). Wink, wink, sure. 🙂

The Dayton Daily News reports that Ohio might be entering the nineteenth century when it comes to fireworks:

Ohioans would be allowed to discharge consumer grade fireworks — firecrackers, Roman candles, bottle rockets and more — anytime, any day on their own property, according to legislation approved Thursday by the Ohio House.

The House voted 77-17 in favor of the measure, which now moves to the Senate for consideration. A similar bill is also pending in the Senate.

Lawmakers have long sought to clean up Ohio’s convoluted consumer fireworks law. Currently, Ohioans may purchase consumer grade fireworks but they aren’t allowed to possess or use them in Ohio. There is a long-standing moratorium on the number of fireworks licensed manufacturers and dealers.

The bill would eliminate the prohibition on possession and ignition of consumer grade fireworks and earmark a portion of taxes collected on sales for firefighter training programs.

Despite illogical existing law, safety advocates say lifting restrictions is the wrong way to go. The Ohio Fireworks Safety Coalition says there is no safe way to use fireworks and often it’s innocent bystanders, including children, who suffer injuries from amateur pyrotechnics.

….

House Bill 253 and Senate Bill 72, both pending in the Ohio Legislature, would lift the ban on consumers discharging such consumer fireworks. The bills would legalize “backyard” fireworks on private property year-round unless local governments pass restrictions.

Based on what Ohioans hear in their neighborhoods during the 4th of July, plenty of people are violating the current law. That could be a first degree misdemeanor with a $1,000 fine and up to six months in jail, but it rarely is enforced.

In 2016, medical marijuana was legalized in Ohio, albeit with numerous onerous, costly restrictions. (Please see Is Medical Marijuana Legal in Ohio?) Four years later, the program is largely seen as a failure, primarily due to the exorbitant prices charged for marijuana. Here in rural northwest Ohio, there are no medical marijuana dispensaries. Many local communities have enacted laws prohibiting dispensaries, and I don’t know of one local doctor who is willing to prescribe the drug. I had ONE conversation with my primary care doctor about the matter, and I learned quickly not to broach the subject again. I could get a doctor outside of this area to prescribe me medical marijuana, but I fear a random drug test by my primary care doctor — mandated by his practice — would throw my pain management into disarray. As it stands now, I have to jump through hoops just to get the Schedule Two drugs I am currently taking. I dare not risk having those drugs stopped, all because a drug test found marijuana in my system. Yes, this sucks. Welcome to the land of God, Guns, and Republicans. (Yes, religion, not science drives the anti-marijuana sentiments of many local physicians.)

I recently read a news story that reported that Ohio medical marijuana users were driving to Michigan to fill their prescriptions. Michigan marijuana is 50-90 percent cheaper than that which is sold at Ohio dispensaries. Even if I could get a medical marijuana prescription, I couldn’t afford it, and my health insurance does not cover marijuana.

I have thought about driving to Michigan to buy marijuana, but it remains a federal and state crime to transport it from Michigan back to Ohio. Some Ohioans have learned this the hard way. Nearby Fulton County sits on the border of Michigan and Ohio. The sheriff in Fulton County has been arresting people who bring marijuana across the state line, charging them with possession. That’s right. People with chronic illnesses and chronic pain are being arrested for trying to affordably alleviate their suffering.

The Columbus Dispatch reported two weeks ago:

Officials in Ohio’s medical marijuana industry have repeatedly said prices will fall once the state’s industry matures, and state figures tracking consumer costs support that notion.

But that state up north has a big jump on Ohio, having legalized medical marijuana more than a decade ago. In 2018, Michigan legalized recreational pot for residents over 21. (Sales began in December 2019.)

“Lots of people are crossing the border because Michigan is a mature market of 10 years,” said Jim Rice, a cardholder who lives near Cleveland and owns KAYA.IO, a cannabis transport company.

Bringing marijuana, even legal marijuana, across state lines is illegal. Ohioans can purchase the drug at a Michigan dispensary but are required to consume it before crossing back into their home state.

The two states are working on an agreement to let Ohio marijuana cardholders buy medicinal cannabis in Michigan and bring it back to their home state, but nothing is final.

Ohio provided a letter to medical marijuana cardholders that let them bring products from Michigan for 60 days after Ohio established a patient registry in December 2018 (the first dispensary opened a month later).

However, there was confusion among patients as to how long those letters lasted, said Tim Johnson, co-founder of the Ohio Cannabis Chamber of Commerce advocacy group.

It’s unclear how many Ohioans actually go to Michigan to buy marijuana, but in the spring a Michigan State University research group estimated that roughly 9% of the state’s legal cannabis is sold to out-of-state buyers, particularly those from Indiana and Ohio.

Ohio medical pot users risk arrest by shopping across the state line, and some card holders have said police in Fulton County, on the state line, were targeting them after they shopped in Michigan dispensaries and brought marijuana back into Ohio.

When questioned about high prices, Ohio’s medical marijuana industry officials point to a litany of regulations they must follow to comply with state law, and note that costs have fallen.

One unit of a marijuana product in Ohio was roughly $131 in the second week of July, down from nearly $800 per unit in June of 2019. The costs of specific products were not available.

A direct comparison between Ohio and Michigan prices is difficult because Michigan doesn’t track sales in the same way and prices for individual products vary, but patients say it’s clear.

“Things that cost $20 dollars here cost $5 there,” Rice said.

I love living in Ohio, but I wish Republican legislators — Republicans control virtually every major state political office — would put the interests of suffering Ohioans first. But, the overwhelming majority of these legislators worship Jesus, and if Jesus can suffer on the cross, what’s a little suffering for people with cancer, chronic pain, fibromyalgia, arthritis, and other illnesses? Just pray your pain away, right?

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Please Do Not Offer or Send Me Unsolicited Medical Advice

chronic illness

My health is very much a part of my story. It is impossible for readers to understand where I have come from and where I am today without me telling them about my struggles with chronic pain, fibromyalgia, and osteoarthritis. Over the past decade, I’ve not been shy about sharing with readers my health history. Unfortunately, in doing so, I have opened myself up to unsolicited medical advice from people who have diagnosed me from afar. In recent years, I have received emails, letters, telephone calls, texts, packages, and personal visits from people who are certain they know the cure for what ails me.

One woman — a former church member — would stop by my house every few weeks hoping to sell me super-duper, cure-all shakes that she was certain would return me to perfect health. I had to hide in my bedroom and have Polly lie to her about my availability. After months of attempts to evangelize me, the woman finally took the hint and stopped. At the time, she was on the shakes. Today? She has abandoned this miracle cure and continues to face debilitating health problems.

Well-meaning people have told me that this or that drug, this or that supplement, reiki, spinal adjustment, surgery, acupuncture, iridology, yoga, chakra alignment, mindfulness, homeopathic concoctions, essential oils, Native American rituals, magnets, diets — need I go on? — would infallibly cure me. Today, I received in the mail a list of books from a blog reader — some of which I have read — that, if followed, would supposedly put an end to my chronic pain. The gist of the books is this: your pain is all in your head.

I go out of my way to avoid interaction with readers when they put on lab coats and play doctors. I either ignore them altogether or I quickly say “thank you” and change the conversation. Yet, it seems no matter how many times I say, PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE, people continue to ignore my request and offer advice anyway. What is it that says to some readers that they are free to disrespect me as a person? Is there anything ambiguous or unclear in PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE? Do some readers think I am stupid or ignorant or lacking competent medical care?

I get it. I am the kind of writer who has swung open the door of his life, inviting such advice. However, I have politely asked that people not give me unsolicited medical advice. How hard can it be for readers (and family members) to respect my wishes and leave me alone? Can they not see that their tactics are no different from those used by Jehovah’s Witnesses or evangelizers from Independent Fundamentalist Baptist churches? “Sir, we are here today to offer you something that will change and transform your life!” Never mind the fact, that I am not ignorant about what they are peddling, be it Jesus or a “cure” for Fibromyalgia.

Let me be clear. I am under the care of a team of competent medical professionals. I am well-educated concerning my afflictions. Unless researchers come up with new treatments, I am going to die “Just as I am.” I have resigned myself to the fact that a combination of what ails me will eventually lead to my demise. And I am okay with that. I do what I can to manage my symptoms. If I read of something that “might” be helpful, I bring it up to my primary care doctor. In the twenty-three years he has cared for me, he has NEVER said no to me; never refused an off-label drug or treatment that “might” alleviate my pain and suffering. “Let’s try it and see if it works.”  My orthopedic doctor treats me in a similar manner. He knows, based on x-rays, CT scans, and MRIs, that I have arthritis from head to toe. He knows that surgery is not a good option for me, so he does what he can to alleviate my pain. The scans tell him that the pain is not in my head.

unsolicited medical adviceI know that writing this post and making it prominently available will do little to stop certain readers offering unsolicited medical advice. It is not like I can ban them or anything. As long as I have a widely read blog and make it easy for people to contact me, I am going to receive emails, letters, telephone calls, texts, packages, and personal visits from pretend doctors. That doesn’t mean, however, that I can’t bitch about it. Praise Loki for the power of bitching, amen? Amen!

Let me conclude this post with several excerpts from articles that address the issue of unsolicited medical advice. The first article is titled, Your Unsolicited Health Advice Isn’t Just Irritating. It’s Damaging. Sarah Blahovec writes:

You may be thinking, “These people [people who offer unsolicited medical advice] sound irritating, sure, but why are you making such a big fuss? They’re just trying to help!”

Of course, I get that they’re trying to help, and in some cases, it really is just a pet peeve that I’ll politely accept or decline and move on. But the thing is that constant unsolicited advice, questioning, and imploring to try something different becomes very invalidating. You don’t just hear a helpful tip to try, you hear that you aren’t trying hard enough, that using medication to treat your condition means that you’re giving up or aren’t willing to seek out a non-medicinal alternative. You hear that all of the work that you and your doctors have done, the tests, the procedures, the trial and error of different combinations of medications and treatments aren’t enough, and that you need to try a different path. You hear that if you did give these suggestions a shot in the past, you didn’t try long or hard enough, you weren’t following it correctly, or you bailed and took “the easy way out.”

It is frustrating to constantly hear the message that not only are you not trying hard enough to improve your own health, but that you and your doctors are not the most knowledgeable about your medical and lifestyle needs. A stranger or acquaintance took it upon themselves to say that they know more about your condition from a bit of Googling and a few books than your doctor with their experience and education, and you with your everyday, lived experience of actually having the medical condition. It is emotionally damaging to not only hear that you aren’t living with your disease correctly, but to always have to educate others on why their unsolicited advice is unwanted and harmful. Unfortunately, they usually just they reply that you’re overreacting and become offended that you won’t take their suggestion. This only adds to the emotional pain, and very often, the physical pain of a medical condition that can be triggered by stressful situations.

My message is this: please, please do not give advice when it is not specifically requested. If someone wants information about your lifestyle, your choice, or your product, they will ask you and they will do the research. If you do give advice and somebody says that they aren’t interested or asks you to stop, just respect their wishes. Nobody should be coerced into trying something they don’t want to try, and if you push forward with your advice, not only would they not listen, but they may become stressed, hurt, and invalidated by your inability to respect their wishes.

Trust that disabled and chronically ill people and their medical teams are the most knowledgeable about their own health and their medical and lifestyle needs. Trust that they will seek out you or the proper sources if they’re interested in what you have to offer. And out of respect for disabled and chronically ill people everywhere, please stop forcing your unsolicited advice upon those who don’t want it.

In an article titled, Please Give Me Your Support, Not Unsolicited Medical Advice, Megan Klenke writes:

I would rather spend the rest of my days banging my head against a wall than to continue trying to explain to people that their essential oils and kale will not cure me. OK, I’m being dramatic, but not as much as you might think!

If you’re anything like me, when you first became chronically ill (if you’re reading this as someone who’s sick), you possibly went through a naive stage early on in your illness. The stage where you believed the random person in an elevator who’s known you for two whole minutes who said that snake oil was God’s gift to the ill, or your aunt’s cousin’s brother’s half-sister who swears by this new detox where you only eat eggs for a month and every illness ever will be reversed, or some crap like that.

But seriously, there was a period of time at the beginning of me being sick that I desperately held onto the belief that I had control and would get better, so I tried anything and everything anyone presented to me. The worst was this “joint juice” concoction my dad ordered off an infomercial that tasted worse than words can describe. Yuck.

After awhile, it became something I did out of spite. Eventually there were few things left that I hadn’t tried, but when someone offered me something new, I would try it to prove to them how wrong they were.

When people constantly offer up these things, especially after I’ve spent time telling them my story, it doesn’t come off as helpful. I know, I know. People generally mean well. Sure. I’d like to say I believe that. But there’s condescension there almost always. And disbelief. And disrespect. It’s a smack in the face. It’s basically people saying to me that I just must not be doing enough or else I’d be better.

We as humans don’t like to lose control. We don’t. I certainly don’t. It’s not fun. We try to control every aspect of our lives. We love to plan out how every minute of everyday is meant to be spent and we think we can control that.

But the truth is, we can’t control everything. We cannot always control our bodies and our health. I know it’s scary to realize this, but it’s true. And I think that’s a big reason why one of the most common reactions people have to finding out that I’m chronically ill is to give me advice (that I didn’t ask for) on how to get better (from my incurable diseases). They want to help, but they want even more to keep up the illusion of control in their world. They’d rather believe that it’s essentially my fault that I’m not better because I’m not doing something right, because I don’t have the proper self-control, than to acknowledge the lack of control we have over our lives.

So what all of this unsolicited advice says to me is, “I didn’t listen to anything you just said because I’m scared of facing our lack of control and my mortality. I think you just don’t know what you’re talking about. I know better.”

That’s the truth of it. So the next time you’re thinking about offering up unsolicited advice to someone who’s chronically ill, it’s probably best to just…not.

Thank you for your love, kindness, and support. Many of you have come alongside me and brought understanding and encouragement during difficult times. It is enough for me to know that people care.

About Bruce Gerencser

Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

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Bruce Gerencser