Unsolicited Medical Advice: Rheumatoid Arthritis and Chronic Illness
Advice column takes on unsolicited medical advice
This article appeared in a nationally syndicated column the other day. There were squeals of laughter in my house when it was discovered by one of my kids. It’s so absurd it’s funny.
Let me get this straight. A woman wrote to a national columnist complaining that her friend does not follow her medical advice. Did she expect the columnist to shake her finger at the sick friend? “Shame on her. Why does she insist on seeing that doctor when you took ten whole minutes looking up that “alternative cure” for her online?” No such luck.
Is giving unsolicited medical advice the loving thing to do?
The columnist gets to the heart of the matter with her last sentence. The caring thing to do is to listen and understand a friend’s illness. Wouldn’t that demonstrate more concern than sharing what you “like to find” for a friend? Wouldn’t that help more?
Rheumatoid Arthritis patients often tell similar stories. Sometimes they ask me, “Do they think I’m stupid?” “Hopefully not,” I tell them. They just don’t understand what Rheumatoid Arthritis is. Do diabetes or cancer patients go through this too? I hope not.
Postblog: Once saw a t-shirt which read: My painful invisible disease is more real than your imaginary medical expertise. I only talked about that to one person because she did not find it funny. I guess it doesn’t take much to amuse us when we so much want to laugh.
Recommended reading:
- Thinking about Rheumatoid Arthritis Hands
- Dear Bridget Duffy from a Rheumatoid Arthritis Patient
- Some Answers for Rheumatoid Arthritis Just Bring More Questions
AMEN! I get sick of my father telling me that supplements will cure my RA!
I totally agree! Alternative medicine is not an appropriate treatment for RA! Stick with DMARDs!
Okay, I want that t-shirt or 3 of them, depending on what judgmental moron I happen to see in any given week. Especially the relatives that are nurses and have watched this disease progress since I got it. Well, certainly, I must not be trying hard enough!
Thanks for the LOL moment so early in the morning.
With friends like the person who wrote for advice, one does not need enemies 😛
I want the t-shirt!! 🙂
Honestly, that could have been written by a friend of mine!! She has been ill over a number of years with various ailments and has found THE cure-all and has convinced a load of friends and family to follow her path. I’ve chosen not to. I know (and really DO believe) that she tells me this with the BEST of intention because she cares and wants me to get well BUT last time we spoke I was not well at all and really felt quite bullied. Her final comment to me was “I’m telling you this will cure you, if you don’t do it then I guess you really don’t WANT to get well”. That was pretty hurtful and I’m not sure our friendship will ever really recover from that last conversation. It’s a shame. I can respect and understand HER choices, even though they’re different from mine. That’s all I’d really like in return.
loved that t shirt line…
whenever smbody seriously advices smthing,ven if i know i wont follow as its useless,still i listen with patience …atleast to show respect to one who bothers abt us…..
I had 2 friends say to me “why are you always comnplaining about your arm hurting looks fine to me?” I no longer complain and say anything about RA I’d rather just grin and bear it.”
T-shirt? It should be on billboards!
as if that specially formulated laxative could actually work! Ive been told sooo many things…..Im also in California, where it seems to be so OPEN to other options… let me tell you it never gets boring hearing the new concoctions , cinnamon,silver,olive oils.. ect ect
“Do diabetes or cancer patients go through this too? I hope not.”
Speaking as one who has diabetes I can tell you yes, all the unsolicited advice I can stand and then some. Also the same with my mental health issues. It reminds me of the scene in X-Men 2 when the mother asks her son, “Have you ever tried not being a mutant?”
I own a shirt like that!! Love it 🙂
I don’t mind when people that know me well tell me about stuff that they have heard of, and ask if I have too. It’s the people that don’t know me, and give me unwanted advice, that drive me batty.
oh man, i love that t-shirt……this really made me laugh….plus, don’t you ever get tired of having to explain to people the difference between osteoarthritis and rheumatoid?…….so many times, people are like, oh, my wife has that (or husband, fill in the proper person) and you have to explain the actual condition????….and THEN they give you the whole schpiel on medications, cures, etc., double whammy!
I’m going to repeat some advice I gave on another thread. When the well intentioned or passive/aggressive people make these comments say something along the line of: “thanks so much for caring, but I really need to follow the advice of my medical team”, and smile if you can.
Many women have trouble saying no or being assertive (not aggressive, as I know I can be at times when I’m completely fed up with it all). This is a great opportunity to learn or practice assertiveness.
I freely admit one of the reasons I’m in therapy right now is to re-learn how to be assertive. It’s a skill I had but lost due to too much internal and external pressure.
Kelly have you ever done a post on assertiveness? People in the medical field don’t always like it if you try to stand up for yourself, and pretty much write you off as a “Google Doc”. It might be a topic we could all use a refresher course on or a starter course. Like you don’t have enough to do already :laugh:
While a google didn’t bring up any t-shirts available with the “painful invisible disease” phrasing, the website The Ultimate Chronic Illness Resource has t-shirts and gear designed by Pamela Rice Hahn that say “My disabling chronic illness is more real than your imaginary medical expertise” and other slogans which many readers here can relate to.
Those with websites can affiliate with their Cafe Press site and get a commission on sales.
There are versions and other relevant tees at ButYouDontLookSick.com . (Note that while the “___ Sucks” phrase is probably too short to copyright, this longer slogan and others like their version of the Serenity Prayer are something that you should not rip off and make your own commercial version of).
(link deleted)
Carol, I’m confused by your post. RA Warrior sells T-shirts to help toward paying for the site’s expenses, but what do you mean by “rip off”?
I think there are others selling RA T-shirts, but the ones I sell on this website were designed by me and my daughter. I’m not making any “commercial version of” anyone else’s work or suggesting that anyone do so.
On Facebook a few hours ago, I replied to comments by explaining that we can’t produce that shirt without some research first to see whether anyone already owns the right to do that. I’ve seen the shirt in question on more than one site.
I got a doosy since my last post saying that RA is 90 percent mental..no im sorry my knees dont want to go to a therapist today.. thanks
This is great… I get really tired trying to explain to people that RA is an auto-immune “Dis-ease”(can’t remember where I first seen it sp that way)! It is not by any means a ‘CONDITION’ like cholesterol, or high blood pressure… where there are natural things you can do to lower. My response is “I’m going to trust what my gut, level of pain…is telling me and that may just mean taking the drugs!” All about QUALITY! Anyone that has done the research knows the key to TRY to minimize the damage is early diagnosis and aggressive treatment. AND I love the talk on being assertive…by the end of one my recent visits I was told “I may be going through menopause” – had to laugh since I just told the Rheumy my DO did all the hormone levels and they were normal – asked too many questions I guess 🙂 AND will continue until I feel I was given an adequate answer (and NO I’m not sorry if one question leads to another) – I’ll keep asking untit I understand and get the answers I need :)! This is my one time I will be SELFISH! (assertive-agressive…tomatoe – tomato “whatever” they want to call it :)!!!!
I’m sorry Kelly, I should have articulated that better.
As an artist, I’m pretty attentive to copyright issues. One thread that came up when looking to see who might carry that t-shirt was a thread elsewhere in which someone noted a cool slogan, and it was remarked that they should make a t-shirt of it for themselves (i.e., not respect the copyright of the originator). Seeing I’d seen versions of the “imaginary medical expertise” on at least two Cafe Press stores, and know there is a lot of problem with people stealing designs on Cafe Press, I was just trying to alert people to not be making up their own versions, especially given that the slogan came from someone who shares our struggle. The “you” was a general aimed at all readers, not you or the site in specific, Kelly. I have nothing but praise for the job you do here!
Carol, Thank you for coming back to clarify. I definitely discourage stealing; I’ve been the victim numerous times with my copyrighted text and images. One reason that this blog has been extremely difficult to manage is that everything is homemade – from buttons to charts to photos to wallpaper to gadgets. Back to the point of the post on unsolicited advice, I did get some unsolicited design criticism, too – but at least I can call it my own. 😎
My T-shirt site is not hosted with Cafe Press because of some of the reasons you site in your comments. I think I chose a more reputable company. And I’m wearing one of my shirts right now & it’s so soft & comfy. 🙂 🙂
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Oh how many of us can relate to this one!! If I hear the phrase “You gotta keep moving” one more time I will try really hard to scream………although since my voice is not so great today that might only come out as a squeak!
I got a Tshirt and plan on getting one for my sister who has had RA for quire some time. The sad thing is that she has flareups but in between them she feels pretty darn good. There are times that I feel even she thinks I am over stating how I feel.
I love my T and will get more in the future – I have worn it twice for dress down days at work and the strange thing is – only 2 people have commented on it. I have seen others read it then turn away quickly and act like they weren’t. Maybe they are afraid I will want to Talk About IT!
As always Kelly – Thank you so much for all you do for us all – I have gotten so much GOOD information from this site, so many great links to good information – and just plain good feelings from the people who are a part of the Warrior Clan!
The reason I thank you over and over on every post is: there have been days that the comfort I have received here is what has gotten me through. I am blessed to have a patient understanding hubby but there are times when only someone who ‘KNOWS’ how I feel can give me that comfort.
Have a blessed day!
to quote a line from Office Space with artistic license on the spelling: “I don’t like to talk about my FLARE” 😀
So glad to hear another person say that. Maybe the “keep moving” thing and the sister thing are connected. There are so many degrees of RA. I’m trying to come up with a diagram that goes beyond the traditional 3 or 4 “courses” – I can’t tell you how I feel between flares anymore because there is not any between. And I understand your frustration with your sister because when I say what I just said, I don’t feel “believed.” The response is almost always silence.
Hopefully, in this case, as time goes by, she’ll see that yours is not just like hers. And of course we both say: thank God for that, right? Wouldn’t wish this on her.
I agree Kelly – I did notice the way I worded that sounded a little insensitive on my part – I didn’t mean the sad thing is that she doesn’t have this in between stuff – I meant it is sad that I don’t feel I can say some of this stuff to her because she doesn’t have it. I would not wish this on my worst enemy! I am sure some of it is also me – I have felt that ‘non’ understanding from so many people – and when she says it’s not “so bad” in between, maybe I am assuming she means I am being a bit of a cry baby. I told hubby last night that if it was just a few flares with nothing in between I might be a little less frustrated.
Wow I am quite out of it today – I had to stop the Arava (Leflunomide) because I had an allergic reaction. The strange thing is the reactions from that are almost identical to RA symptoms.
Have a great weekend Kelly – hope we both get a good day in this week!
Keep up the Fight of the Warrior Clan!
I did know what you meant. Didn’t think you were insensitive. I have similar situations.
I haven’t had Arava, so I don’t even know what’s that’s like. That sounds weird. How do they diagnose the allergy? Is it dangerous for you?
Thanks for the good wishes. 🙂
The allergic reaction I had – I could not breathe! Well actually that is a bit dramatic – I could not take a ‘deep breath’. Then I had a pain different from RA pain (which was hardly noticeable in comparison) between my shoulder blades, and this all happened each day about an hour after taking the Arava (Laflunomide). I stopped taking it and the reaction went away. I have to be off of everything but my Embrel for 2 weeks until it is out of my system. Being in limbo about who my doctor will be in 2 weeks – I don’t know where I will be going from here. I guess I will check out the other doctors in the practice, see what they are like and go from there.
On to the next med I guess – Why do I feel like a guinea pig????? LOL
Thanks for you concern.
Have a terrific day
Kelly,
I LOVE this post. I’m going to add a link to it on the post I did about ways to deal with this experience, and I’d like to add you to my blogroll as well, if you don’t mind.
I was diagnosed with RA and Fibromyalgia 15 years ago, and spent a lot of time dealing with that kind of s**t. I don’t get it much any more though, because most of the people that did it have slowly dropped out of my life (okay, I ruthlessly removed them because I don’t have the time or energy to deal with it.) I really don’t mind if someone makes a suggestion (my standard reply is, “thank you, I’ll discuss that with my doctor,”) as long as they respect my right NOT to try it, but anyone who gets pushy or pissy when I don’t is gone. Most people don’t have that option, especially if its a family member or co-worker, but by the time I was diagnosed my family relationships were pretty “distant” anyway so it wasn’t a big deal for me.
Wendy
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This was a good one and oh so true. I have a friend who gets mad (not at me) when I have a flare because the doctor is not doing enough! My grandma called me all excited the other day about a new med for RA call Rituxan, she said it was the best treatment! I told her I had tried that one already with no success and she kept reading the article to me louder and louder saying “BUT THEY SAY RIGHT HERE IT IS THE BEST MEDICINE AND IT WORKS!” This week she gave me a cross that she sent away for, the monks who sent it “guarantee” a cure- and this is just stuff from the last two weeks! I get advice all the time. I’ve learned to take it and smile, at least people care!
Hi Noel, it’s good that you have people who care. I think the cross thing is hysterically funny. 😉
I really appreciate all the comments I’ve read here. Unsolicited medical advice, particularly that which blames the victim, is a very common problem across diagnoses. My teenage son was diagnosed with ulcerative colitis at 13 and in the 3 years he’s been living with it the single most annoying and least supportive person in my life has been my mother, who remains absolutely convinced that he got this incurable autoimmune disease, no cause known, no prognosis possible, just one day at a time on chemo drugs … because in hew view, his diet was unbalanced. He was a 13-year-old nondrinking, nonsmoking, non-substance abusing child of normal weight, so the diet was the only thing she could think of to blame me for. For some reason it makes her feel more control of her own health and life to find something to blame. Sure wish she’d keep it to herself.
Catherine, thank you for sharing. Let’s hope that hearing how it feels to be on the receiving end of this may make an impact. I have folks in my life like your mom & many of us with chronic illness do. If they imagined what it’s like to be the patient or the patient’s mom, I hope that would help them be more compassionate.
I LOVE the writers response. People ALWAYS give me advice!! I have RA (which they’ve heard of) and Fibromyalgia (which they’ve NEVER heard off) and I’ve had comments; from the usual “you don’t LOOK sick??” to “well if you just pushed yourself a bit”.
I feel I should give out Medical Diplomas to the people who offer their medical advice (unless of course they actually have one lol!!)
Also LOVING the “My painful invisible disease is more real than your imaginary medical expertise” but I guess that’s just my “Invisible Illness” sense of humour!!!
I just had a friend who chewed me up and spit me out! lol. She is dealing with her own breast cancer so i didnt say anything! She wailed on me about driving and taking my pain meds..Also about the fact her grandma had Rhuematiod with every finger sideways and she lived to 99 years old! If she doesnt want awareness then there is no point in trying to make her understand! Or is there? Thanks for all you do here Kelly!
Chewed you up?! Bother. No, you can’t force anyone – that’s true. It must be hard for people to understand that there are various courses of RA & various degrees. Some especially the elderly, just have it in a few joints or hands only.
Sometimes I have a hard time trying to explain this to other patients even. They think that everyone can do what they can do. We have to try. But I have “given up” on certain people who are particulary “dense” on the matter. It’s like they put up a wall. :no:
I really haven’t had anyone offer me any kind of advice, but I’m totally amazed that no one seems to really understand what it is. I can’t even count the number of people who have said to me “oh yeah – I have that”, of course, referring to osteoarthritis or just the now and then aches & pains that they get. I usually get confused looks when I try to explain the difference.
“Oh yeah – I have that” – maybe the dumbest 5 words in English now. 😛
I would LOVE that T-shirt!!! Love that column! I can’t believe that anyone would bother to write in on something like that, but I guess a lot of people truly believe that they are “helping” by forcing their beliefs down the throats of people that don’t want to hear it. Awesome.
I thought the T-shirt was funny!
I was wondering if anyone could give me information regarding ra and pneumonia. have ra for almost a yr. and was diagnosed with pneumonia yesterday. my ra dr. is on vacation and his ‘stand in’ said to hold off the methotrexate and take prednisone for my flare while i am on an anti bactrial drug called cipro. the pharmacist said to take methotrexate and is ok to take prednisone while taking cipro. my primary says don’t take prednisone, take methotrexate and see her in a few days. i cannot find any readings about ra with pneumonia and thought someone out there has an answer for me…thank you in advance!
Taking cipro with prednisone has some risks for tendons – I’m not sure how common or rare it is but I’d ask the doc about it since there are other antibiotics available. I guess if he’s comfortable with the cipro you could just watch for side effects. Some reference links: http://www.drugs.com/cdi/cipro-suspension.html http://www.nlm.nih.gov/medlineplus/druginfo/meds/a688016.html
I hope you are better soon! I did have pneumonia after about 3 yrs w/ RA meds. I didn’t stop my mtx but I should have (poor doctors advice). I got better anyway, but stopping it is safer.
Yesterday was my day after MTX day and I was sitting in the house with a grade fever, chills one minute, sweats the next. Nausea and a flare and ungodly pain above my left breast, closer to my arm pit then my breast bone AND my sister tells me “come on down and get in the pool, I promise it will fix you right up!” All I can say is momma must have dropped her on her head as a baby.
The unsolicited advice I get from non-RA people is frustrating, though I’m just starting out and I’m sure most of you have heard a lot more than I have. I have to say the advice I received from some people claiming to have been cured from RA is what really bites my butt. How is it that if there is NO CURE, that these people have suddenly found a cure? And if they really have a cure, why are there thousands of people on this site and others like it suffering for no reason for so many years? I guess all of you prefer to have RA, hey I understand, after all it gets me out of a lot of housework and I get to take some really “cool” drugs that can do nasty things to my body! Course I have lost 10 lbs since I was diagnosed and started on meds, so what do I have to complain about? (really wishing I could make one of those eye rolling smileys here)
Maybe it’s the meds, maybe it’s the RA, but don’t you ever get the urge to _itch slap some of those people?
Gail, you are so funny, today.
That’s because I’m having a good day today. It’s much easier to be funny then. : )
It’s been a challenging couple of weeks-Even more than my normal Rheumatoid Life that is anything but normal. – I had my gallbladder removed as it stopped working (they don’t know why this happens) and they found a lump in my breast that must be investigated( they don’t why this happens). My mother lost it on me as I was recovering from surgery at her house and I lost it when I discovered my sister and mother had a long dialogue about my disease etc and what I should be doing and what I was apparently doing. I say apparently, because I wasn’t there. My mother had blasted me saying, “there is no point and talking to you about naturalistic practices-like somehow they have found a cure for all that is going on with me. The clincher for me was: I had a movie night and treated myself to cheezies and ate, omg, a half a bag. This is a blue moon treat for me but one that caused my mother to report to my sister what and how much I ate…as if this is the causation for all my woes. I can hear it now…”she shouldn’t be doing that!!” “they are taking her gallbladder!!!” I saw it as a night off from all the worries around me and a movie and orange-stained fingers seemed like a great night to me. This lead to all their concerns and how they are effected and how they have to help me and how I talk about it all the time.
By the time I got back to my house, all I wanted to do is hide under the covers and never come out. I felt exposed, self conscious for talking about my pain and reporting the newest medical challenge. I felt this undercurrent from them, though not plainly spoken, that I wasn’t doing enough, exercising enough, taking enough vitamins and toting around a pill tote full of :”thousands of pills”. I was questioned as to how much pain meds I was taking and when I didn’t want to get into “it” I was accused of hiding something. Why didn’t I want to report what I was taking. Um, I wonder. Under the current theme, Your Not Doing Enough and Why Won’t You See a Naturopath.
My family, I hear, is acting from the premise of love and care. However, the more they “love and care” the more I feel alone and inadequate. I wish they could accept the status quo. I wish they had faith in my doctors and treatment. I wish they would be optimistic by trying to help me keep “up” but not delusional that they can cure RA and if I choose not to pick one of their treatments, that I am not caring enough about my wish to get better. I wish when they choose to help me out with my life, that I don’t have to hear about it later . I wish they would understand, My life is anything but normal anymore with Rheumatoid.
If it was me, I wouldn’t talk to them. Then maybe they we get it. Behave equals she talks to us. I don’t talk to my parents for many reasons. There are certain occasional behaviors you can tolerate and say. “They just don’t get it.” But As far as them being your support system they should do much better. Shame on them and I hope you can relay on someone else next time you need the help, Theresa. Hugs!
Love it!! This is the best thing I have ever read! Thank you, Kelly.
I must say that friends and family have a hard time accepting the fact of RA: no cure. Maybe it’s because they don’t understand or they are unwilling to understand. Many of them have told me it’s impossible for this condition not to be cured. I too get tired of responding that this is true and I mention many other conditions that currently have no cure. On one side they are trying to be helpful. On the other, they fail miserably in doing so.
This is my experience with non-conventional ways of therapy, way alternative to medical advice: I live in a christian orthodox community, where a lot of people still believe in the healing power of saints. So, the first thing my (older) relatives did was to hand me a list of saints-healers who specialize in (treating) my condition and “advised” me to visit the specific churches devoted to those saints. One day, my father came to visit me and out of nowhere he started blessing me with an amulet made by my mom (he said it contained holy water). I know people have the right to believe in anything they want but what I can say is that they are not taking my condition seriously. I mean, what’s next? Witchcraft? A seance? The exorcist? Very frustrating.
Giorgia, sometimes I feel like apologizing on behalf of other Christians for things that are done in the name of faith, because there is so much “un-awareness” about RA. They probably mean well and we’ll hope they do, but it’s frustrating like you say, because we’d much rather have their support. You might want to read the comments page and this post, too(click here), where we discuss the church and chronic illness (things that don’t have cures yet).
My mother gave me a card with links to a quack website and quotes about water curing all disease, such as “Don’t treat dehydration with medication. You are not sick, you are thirsty!”
I am 83 and have had Marie Strumpels since my early 20’s diagnosed when I worked at Montifiore hospital in 1953 with problems over the years including sciatica,muscle spasm and back aches. For the last ten years I have been helped by Alpha Lipoic Acid and in the last year by the use of magnetics which has eliminated all pain and spasm. I take no prescrition medications or over the couter NSAID’S. I swim ride a bike, play tennis and golf. I am a retired chemist and emeritus member of the ACS and was a member of the NY Academy of Science for 50 years.
I just received a book as a gift from my boss at work. Arthritis & Common Sense by Dale Alexander. The copywrite date on this book … 1954!
I am waiting on pins and needles to get home so I can start reading and look forward to some really helpful insight.
It was thoughtful of her, but I hope she didn’t spend alot.
As newly diagnosed, I have been getting ‘feedback’ and advice from the few friends and family that I have told. Yes, a lot of it is try the natural approach. I confided to a co-worker who is one of our counselors at work and after I told her my diagnosis and how TIRED I am of people offering their advice and how I wish I told no one about this she replied “educate them. ” She advised me to literally print out some simple explanations and/or email them to those people who are trying to be supportive and educate them about RA. She also said to word it like “I know you probably do not know too much about my disease and since you are being supportive of me I’d like to give you some information on what it is and what it is NOT. That way we’ll be on the same page. I have come to the conclusion that people that truly care about us will do anything they can to try and save us because they don’t want to loose us. I am guilty of that when my dear sister who died of a rare cancer was first diagnosed. We were told right off the bat -no cure- but I got on line and looked up every herb, tonic, medicine to save my sister. Just remembering how difficult it was for me to accept my sister’s fate, for those I know truly love me, it is very hard for them to find out this disease can kill. My husband gives me every support and we talk about it but if anything comes up about a grim future –he can’t take it. Not now at least because this is so new for us. Just made the transition from January diagnosed Palindromic Rheumatism to RA this month-February and began MTX last week. I still can’t believe it. How fast it moves and how pain just keeps increasing. Truly somedays when anyone asks how I am I feel like saying none of your *&^% business that’s usually when I am exhausted. Blessings everyone.
not sure if i have ra. but i was talking to a chiro. and he thinks i might have it. from the pain i have. and for how long i have it. i think i have some of the symptoms. i have pain in alot of teh joints. have had for a while. nothing really helps the pain. what u think
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Kelly, I tried to see how to contact you. What syndicated column is this from? I squealed with laughter too…got so much advice when my daughter had adrenal cancer. Can you help me? Would love to post it on my blog.
I’ll try to look that up asap. Remind me if I forget. xo
This type of experience is a constant – I think it’s part of the blaming and shaming narrative that is so pervasive right now. BTW, found the shirt on CafePress – both DH and I thought it was hilarious. I will be wearing it A LOT!