Because I am forthcoming about the health problems I have, well-meaning people often give me unsolicited medical advice. Sometimes, they don’t know what to say so have you tried ________________ becomes the secular version of I’ll pray for you. Other times, the person refuses to believe that what’s wrong with me can’t be fixed. Surely modern medicine, alternative practitioners, and witch doctors can fix anything, yes? Or so the thinking goes.
Many people have a simplistic view of health, sickness, and how the body works. They wrongly think that if I just eat right or takes this or that vitamin/supplement that every health problem I have will be cured. Some people think that doctors deliberately keep us sick so they can make money; that there is a grand conspiracy between doctors, hospitals, and pharmaceutical companies to keep people sick so they can profit from their sickness. According to people who think like this, I should see a herbalist, homeopath, reflexologist, acupuncturist, accupressurist, aromatherapist, chiropractor, or irridologist–anyone but a doctor. Armed with anecdotal, subjective stories about miraculous healing, they are certain if I would just get away from Western doctors that all would be well.
I am all for trying anything that is evidence-based and has a proven track record. What I’m not willing to do is waste my time on woo-woo (pseudoscience, quackery). Every week a family member, friend, or reader of this blog sends me an email with a link to a surefire cure for what ails me. They are certain, based on their superficial reading of an article, that if I will just try __________ I will be cured. Again, if there are peer-reviewed, double-blind-studied treatments that hold out the possibility of helping me, then I am all for them. Sadly, most of the links sent to me are woo-woo.
When you’ve suffered for a long time and have to deal with unrelenting pain each and every day, it is easy to get upset when someone with good intentions says have you tried _______________. I try to be polite, realizing the person just wants me to be better, but the constant unsolicited medical advice does wear on me. My health problems are very much a part of the fabric of my life and I think it is important for me to write about them, but I find I am less willing to do so because of the unsolicited medical advice that comes when I do.
I am well read on the subject of Fibromyalgia, auto-immune diseases, and arthritis. When I was first diagnosed with Fibromyalgia 17 years ago, I read every book about Fibromyalgia I could get my hands on. When new studies come out I read them and try to look at the methodology the study used to come to its conclusions. Many studies have come and gone, with most of them offering little hope to people with Fibromyalgia. While doctors and researchers continue to study the various diseases that afflict me, so far there are no cures.
Over the years, I’ve tried numerous drugs, supplements, and treatments, all to no avail (along with tens of thousands of dollars of tests). At this point in my life, I am satisfied that I have done all I can do. For someone like me, hope can be a cruel thing. Better to embrace life as it is than to constantly hope for that which will never happen. It’s unlikely that a new drug or a new treatment for Fibromyalgia will be found in my lifetime (and no, Lyrica is not a cure for Fibromyalgia). Researchers are a long way from definitively understanding what causes Fibromyalgia, and even further away from coming up with a treatment for it. And even if a cure for Fibromyalgia is found, I would still be left to deal with arthritis, a disease that can be managed but not cured.
I appreciate every one of you who has supported me over the years. Your gentle encouragement and love mean the world to me. While doctors can do no more for me, your support gives me strength and motivates me to get up in the morning (or early afternoon) and continue to write for this blog. Thank you for making a real difference in my life.
Bruce
Note
Last night, Polly and I watched the first episode of The Daily Show with Trevor Noah. (It was awesome, BTW.) Comedian Kevin Hart was Noah’s guest. Noah asked Hart about his commitment to physical fitness and Hart told him that running was the most important part of his fitness regime. He then went on to say that he sees himself as an evangelist of all sorts for running. Hart said, everyone can run! I hollered, no, dumb shit, they can’t. I can’t run, nor can I walk long distances. I know I will never run again and I have no doubt that I will someday be wheelchair bound. As it is, I can walk or stand on my feet for, at most, an hour. When we go to the grocery, I must hold on to the cart so I can stand upright (it also keeps me from falling). Fifteen to thirty minutes into our shopping, I will feel warm, stabbing pain in my upper thighs, face, and lower back. A few minutes later, these areas will burn and feel as your foot does when it falls asleep. Doctors theorize this has to do with my back and the numerous narrow disk spaces I have, especially in the lower back. So, run? Not a chance. I’m just happy to walk through Meijer without having to bend over the cart or sit down to relieve the pain.
One thing that would help is medical marijuana, but it is not legalized in Ohio.
121615
I think one of the most frustrating aspects of people asking “Have you tried _____” and etc. … is they just have no imaginable concept on how to envision and identify with pain that never ends – it’s inconceivable to them. Worse is, they think that the pain meds you (and I) take are some magic panacea that makes pain evaporate and disappear completely and that while “under the influence” you (and I) are “normal” again.
They don’t … and it doesn’t “make it all go away” not even for a little while. All they do is prioritize how the brain processes the pain signals from “It’s the only thing you can think about” to … “I can still feel the pain considerably but I can now focus on another task”. Like trying to have a conversation in a room with a TV or Music blaring on full blast … then turning the noise down half way and continuing the conversation … the TV/Music is still considerably audible and distracting to the conversation but at least now you can at least hear the other person speaking.
I won’t say I “know” how you feel … but I “get” the general idea since I wrestle with disc/spine issues (for roughly 15+ years) … the relentlessness is exhausting
I try to educate people if they ask. I tell them that pain meds don’t take away the pain. They do however, on most days, level out the pain cycle. They break the pain so I can function, sleep, etc. Some days they don’t work very well, other days they do. Unless I want to sleep all day, there are days I just have grit my teeth and endure.
I know almost EXACTLY how you feel. First, when I’m working I conceal my discomfort so my illness isn’t apparent. So people can hardly tell, even when I’m emotional, that it’s PAIN, dammit. Second, I’ve had too many people offer me “these great vitamins that cure people with fibromyalgia” my eye. I don’t know anyone who has had fibromyalgia, moderately to severely, who isn’t taking several drugs. Anyway that can control it with diet and exercise doesn’t have cause much of an illness.
Also, the pain thing. Just when my pain seems to be laying low it is just about to ATTACK me with a pain flare. My pain clinic nurse practitioner last week offered to have Dr Kindl do another epidural block in my neck. I told her I would run my TENS unit for 3 days. It helped. The block “helps” but for the out of pocket expense, it doesn’t help enough.
Now, about things to relieve pain. I have been using, when feeling particularly bad and my cocktail of meds plus Tramadol doesn’t help, an herb called Kratom. It helps a lot BUT I take it sparingly so I don’t become dependent. Kratom is legal, unlike marijuana. Maybe we’ll end up with legal pot and can then have another drug in our arsenal.
I get it Bruce, I really do. And I quit my job because even though the Gabapentin helped, it didn’t take away the pain of standing up for 7 to 8 hours, 4 or 5 days a week.
I will say this: when I look at my son (who has bad fibromyalgia) I would happily take his pain if he could have a normal life. But I can’t so it’s a worthless fantasy. And I hate knowing the pain you’re in because, as bad as I sometimes have it, it does recede quite a bit.
I also know anyone with chronic pain who has what we have, such as lupus, MS, widespread arthritis, or etc, have the same thing. Because if we LOOK normal, we must be.
Didn’t mean to make this so long!
You raise a good point. Most of the people I know with chronic illness and pain go out of their way to not burden others. They put on a happy face even when they want to scream and retreat into the darkness.
Yup. Zoe nods her head affirmatively.
I have chronic pain issues, but they’re not crushing. I know that I DON’T know how you feel. But I do know the annoyance of having well-meaning people decide to police my life in order to get me well. You take too many meds! You should try this herb! (You just told me I take too many meds, and you want me to try another one?) You should try my physical exercise routine, which EVERYONE can do! (Um, no, I can’t, which is why I do MY routine.) You should try harder to diet! I lost 20 lbs. last year! (Good for you. Not all bodies are equal.) You need to focus on positive thinking! Nobody needs antidepressants! (I’ve tried it your way. I need the drugs.) And so on…
So I try not to be one of those people. It can be a fine line; I want to share this new stretch I learned in physical therapy, or encourage someone to stick with a meds regimen they find difficult, stuff like that. Sometimes I can’t help but point out to a friend that they’re overdoing, and really ought to back off a bit, because we’ve gone through this before and they’ll be moaning tomorrow. But I think I mostly get it right. I hope.
I have multiple chronic health problems, including two I was born with, and I have heard everything you mention (and everything in that graphic), and more. In addition, a pastor once told my parents that my health problems were the result of my parents’ “unconfessed sins,” and my grandmother even took me to be prayed over by faith healers a few times (fortunately my parents put a stop to that.) None of it worked, of course.
These days, I have no use and no patience with anyone giving me unsolicited health advice. I feel like getting a poster printed up for my wall: “Unless you are an M.D. or Ph.D. who is a world-renowned and academically qualified expert in my particular chronic diseases (one of which is quite rare), I am not interested your advice. Period. Full Stop. Kindly take whatever “advice” you may have, and shove it. Thank you very much.”
What do I want from people? Three things, mostly 1.) Ask me what I need. 2.) Listen. 3.) Be my friend anyway. A stunningly large number of people are incapable of #2.
Oh by the way, this week just happens to be Invisible Illness Week: http://www.invisibleillnessweek.com
You are so right on the three things you want from people. Healthy people often have no frame of reference. One family member used to have the habit of reminding me that their 50s were the best years of their life. Well good for you, but my 50s aren’t. Way too many people use their own experiences as a frame of reference and are unable to step out of these experiences and see things from the vantage point of the sick person. Until they experience chronic illness or pain for themselves there’s not much I can do to change their opinion.
Nobody has mentioned (queue drumroll and prepare the fireworks) ESSENTIAL OILS?!?
Thank you for mentioning essential oils. Will edit my post to add them. 🙂 definitely been told essential oils will help me sleep.
I was told that regular usage of a certain combination of essential oils would eliminate my constant knee pain. I guess those oils are quite magical and can reattach all the torn cartilage that needs to be surgically repaired.
have you tried colon cleanses? (not on you, of course — on the people that give you unsolicited advice; i hear it’s quite therapeutic psychologically, but doesn’t do much physically.) 😉
thanks for writing these posts. i personally don’t know what you’re going thru, but your patient explanations help understand you and people in similar situations a bit more.
Ah yes, colonics, candida, unbalanced intestinal flora…shall I go on?
? i had a colonoscopy a few months ago so I did have my colon cleansed.
I should write a book about these things….
I should add that I am in no way criticizing anyone who uses some form of alternative medicine. But, when someone says that ______________ will cure what ails me then I am going to ask for evidence for this claim. Not anecdotal stories or testimonials. Scientific evidence. Peer reviewed, double blind studies. These are things that carry weight with me.
Oh boy. I tried taking all kinds of vitamins and they helped my blood work numbers, BUT I still had fibromyalgia. I seriously studied up about homeopathy and found out it didn’t do much. Now, I also got adjusted by my chiropractor for years, and I would get short term relief. None of those things cured me, so I went to the dark side. No, just kidding! I went to MDs and medications. Plus surgery and epidural blocks. But no, the pain is never really gone.
I had a friend who was very into homeopathy, accupuncture, all the woo-woo stuff. She would seem almost offended when I would refuse to take her advice, and keep pressing her nostrums on me. Then she got into a vitamin MLM scam. Sigh.
I can’t say that I know what your are going through with pain, but I do know what it is like to be diagnosed with a not very well understood, “invisible” chronic disease. I have a mild case of a relatively rare thing called Meniere’s Disease. Mine is currently well controlled with diet and diuretics, but I try to avoid thinking about what might happen if it progresses to one of the more acute forms that can be totally incapacitating. As it is the low sodium Hydrops diet that it requires makes it very difficult to eat like a normal American when I eat out, at least on any but the most occasional basis. I also have to be careful with caffeine and alcohol consumption.
I was ill for 11 years from the age of 19 to-30. My born again mother would always say “The Power of Positive Thinking”. Not that she ever read the book or give me a copy. It was annoying that my mother somehow through my auto-immune problem would be cared by plastering a fake smile on my face.
Oh, I’ve heard that quite often. Just think good thoughts, Bruce, and you’ll feel better. Irritates me when people say this. I want to say, hey let’s trade bodies for a week and then we’ll talk.
I was told God could cure my muscular dystrophy but I never believed it, even as a devout believer. There have been no miraculous cures of a genetic disorder (or anything for that matter), just like no limbs have been miraculously regrown on someone. Show me facts, and I will believe it. PubMed is usually my source for all things medical, in terms of treatments, etc. Sadly, there are a LOT of claims on known treatments for diseases that have absolutely no scientific merit. They just feed false hope. I’d much rather put my faith in researchers finding a treatment or cure for muscular dystrophy than in God or anything else. I’d rather not worry about when I will be confined to a wheelchair and just take it a day at a time. I think I’ve finally accepted that, and you seem to have accepted your afflictions too. I think that is a good step in the right direction! 🙂
Have you tried obecalp? It is truely a miracle drug, it helps the natural mind-over-matter systems your body already possesses. Just don’t take them in front of a mirror, that can severely affect the potency. 😉
I’ll give it a try. 🙂
Worth a try. It worked on that one episode of M*A*S*H.
Thanks (again) for writing about this subject!
I think you probably could guess that I’ve been on the receiving end of unsolicited advice umpteen times. One would think I’d know how to handle it by now.
I recently referred to my health condition on FB & was reminded by a well-meaning person of why I won’t do it again anytime soon. The person let me know that it sounded like I need a serious anti-inflammatory diet and that given time and care (or something like that) our bodies heal just fine. (Of course one of my immediate thoughts was my dad who lived his last 12+ years of life as a quadriplegic from an auto accident.)
Well…the comment pissed me off. But I did not want to put my energy into getting into an explanatory text dialog and then spending another umpteen hours mulling over and over in my mind about what I said wrong or right or diagonally. Plus I don’t know the person well and we’ve never met face to face or even talked on the phone. And I really don’t have the energy to expend, at this stage, educating anyone about the hell I’ve been living and everything I’ve done and do to stay somewhat functional and mobile. They probably wouldn’t believe me anyway…or they’d think I was exaggerating, or something. At one time, I might have thought similar if the roles were reversed.
So I called a good friend and vented over the phone. Poor friend. lol
After I cooled my jets and checked my own projections and I looked at my own internal responses and, as my manner is, anal-eyezed the hell out of them… I came up with a deflective comic-type response to the comment…that if I ate much better I’d grow sprouts out of my hair follicles and be a Chia pet for Halloween.
I almost despise that I spent that much thought time (and thus ENERGY…which is precious to me) into handling that kind of commentary. OTOH, I do get to know myself better and I’m continually learning…and getting closer to the I-really-don’t-give-a-bleep-what-you-think attitude. I know I don’t have to outwardly respond to any comment, but to not comment is not typical of me…unless, among other reasons, I’m just so drained I simply cannot put the energy into responding…or if the person with whom I’m conversing seems to be of the psychopathic-type variety.
I hope I don’t sound to warped that when got to these lines in you blog post, I lol. That “certainty” is almost comical.
“…According to people who think like this, I should see a herbalist, homeopath, reflexologist, acupuncturist, accupressurist, aromatherapist, chiropractor, or irridologist, anyone but a doctor. Armed with anecdotal, subjective stories about miraculous healing, they are certain if I would just get away from Western doctors that all would be well…”
I appreciate you Bruce!!!
<3
~Carol
Thanks, Carol, I appreciate the kind words.
This came across my computer screen this morning. I think it is an excellent article.
http://www.painnewsnetwork.org/stories/2015/9/13/the-7-psychological-stages-of-chronic-pain-illness
Thanks!