There was a survey out the other day which found that, out of 2,000 adults, 38% said that they “evaluated their self-diagnosed condition over the internet”, and 48% said that embarrassing conditions such as sexually transmitted diseases and bowel problems would make them think twice about going to the doctor.
Now, first of all let’s take a look at the 38% of people – that’s a whopping 760 out of 2,000 adults – who are self-diagnosing and trying to evaluate their own symptoms over the internet. These people have no brain.
Does that sound a bit harsh? Well, it’s true. I’m sorry if there’s anyone reading this who self-diagnoses through a quick Google in the morning, but, in my humble opinion, you are daft. Let me give you a number of examples as to why, and seeing as though IBS is my specialist subject, as well as one of those embarrassing conditions that people worry about, I’ll be using IBS as an example.
Let’s imagine that I am an IBS sufferer, and I have never been to the doctor about my symptoms. I search for “IBS” on Google, and I get a number of different sites. Right away I’m in trouble – some of these sites are very well-researched and written by the best doctors in the world. Some are written by people who are only interested in selling you their brand new super-dooper pooper capsules that cure IBS, cancer and global warming in one go, only $99.99 while stocks last.
And some are written by IBS sufferers themselves, and let’s say you click on to IBS Tales to try to get your diagnosis. I’ve listed some common symptoms of IBS on there, and maybe you have every symptom on the list. Hurrah, you think, I’ve found it!
Except that IBS Tales is written solely by me, and I often make mistakes, being a human bean. I’ve written that bleeding is a symptom of IBS, when I meant to write that bleeding is rarely a symptom of IBS. And you actually have cancer.
Now, that of course is an extreme example, but it’s perfectly possible. And what about celiac disease, or colitis, or Crohn’s disease? Are you able to see up your own bottom? If not, you’re probably going to need a colonoscopy, and that’s not something you should attempt in the living room.
And if you do have, for example, celiac disease, when you’ve just randomly decided you have IBS, then you’re throwing away the chance to feel completely better, just for the sake of a doctor’s visit. Celiacs stop eating gluten, and then they feel fine. That’s it. Why on earth would you pass up a chance to get better that’s so easy?
So, that’s that – diagnosing any medical problem over the internet is plain crazy, and if I catch any of you doing it, *especially* if I catch any of you using IBS Tales to do it, then I’ll personally come round and eat your gerbils. That’s how strongly I feel about it.
Now that’s out of the way, let’s go back to the second stat of that survey, the 48% of people who would think twice about going to the doc with a sexually transmitted disease or a bowel problem. Now, that one I can understand a bit more, as long as people think twice but do go to see the doc in the end.
I mean, no-one wants to get their genitals out on the table, and no-one wants to talk about their bowel (except me, but I’m special). I do get that, and although my own embarrassment has rather worn off now after so many years as a sufferer, I do remember sitting in the doctor’s office and cringing as I tried to explain myself. It’s no fun.
I think the most useful thing to do though is to try to imagine it from the doctor’s point of view. There are literally millions of people with IBS. Millions. Plus all those people with the other bowel disorders, plus people with everyday constipation or diarrhea. And then there’s people with herpes, and genital warts, and hemorrhoids, and bizarre things growing on their buttocks.
I’m willing to bet that there’s not a doctor in the country who goes for more than a few hours without hearing something disgusting, or seeing something gross, or poking their fingers into pus. These are not people who sell Prada handbags in Harrods – these are people who deal with bodies falling to bits and decrepitude. And they’ve seen it all before.
So, please, please go to your doctor and tell them all about your bowels. They’re honestly not sitting there and laughing at you, or thinking “Well, I liked this person when they came here for some headache tablets, but now they’re constipated I no longer value their time”. They’re thinking “Right, IBS, let’s look at your drugs, did you have that colonoscopy, did you try the fiber drink?”. And that’s not scary. I promise.
Hi Sophie,
Do you think that if the sizeable proportion of people with IBS-like symptoms who currently self-diagnose actually went to the doctor, the proportion of the population officially considered to be suffering from IBS would go up? (I assume they gather statistics like that from data collected from GP surgeries and hospitals, or perhaps they do it by some other means? I mean, I’ve often read that more women than men are thought to suffer from IBS, but then they usually follow that by saying that this is because women are generally more likely to go to see their doctor than men, which may skew the statistics.)
I’m just wondering about that because I’m thinking that if the proportion of the population with IBS was found to be higher than currently estimated, that would surely be a good thing for all IBS sufferers, because (hopefully) the more widespread a particular illness is considered to be, the more resources are put into research. So that would be another good reason for people not to self-diagnose! (Though I can completely understand why some people do it.)
Debbie
I’m beside myself and I’m not sure who to take it out on! I got a call last night that my best friend’s mother had died after surgery, and it was all caused by hospital staff who continued to say the pain the lady was in was “just because she was constipated”. Geniuses they are. It turned out the pain was her bowel and intestines developing gangrene and rotting inside her. By the time they realized the pain and distended stomach WASN’T “just from constipation and laxitives” they operated, but she was just too far gone.
The thing that REALLY gets me is these members of the medical and nursing profession were told NUMEROUS times by this lady’s family members that she’d given birth to 3 children all without any pain medication, and that she had a high tolerance for it. So if she was complaining about pain, it was bad. Instead of looking into it they gave her morphine and told her family it was “just this” or “just that”. When my friend brought up getting a second opinion she was told that because her mother was of sound mind, she was the only one who could ask for that, then they refused to talk any further to my friend. I guess she was being too much of a pain in the ass for them to take the time to do their jobs properly and consider the patient and not their own inflated egos.
I guess I’m posting this here in the hopes that it might prevent someone else from suffering or losing someone they love. This lovely lady was 50, and had a lot left to live for.
Has it occurred to you that most of the people who self-diagnose do so because they have tried doctors (in my case at least 6 different doctors on 3 continents) and were never correctly diagnosed? Doctors are only interested in pushing whatever the pharmaceutical industry tells them to – most GPs are useless unless surgery is required or they can make more money.
Debbie – that’s a very good question, sorry for the delay in getting back to you, I’ve had one of those hectic times when everything seems to collapse in a heap at once!
So…would the proportion of the population said to have IBS increase if people stopped self-diagnosing and went to the doctor? It’s certainly true that you hear pretty different estimates about what proportion of us actually have IBS, usually in the 10% to 20% range.
It may be that some people don’t see a doctor because their symptoms are fairly easy to live with, so I would expect that more cases of mild IBS might be diagnosed, but the figures for moderate to severe IBS are probably more accurate because enough pain and suffering will overcome most people’s embarrassment or fear.
On the other hand, I do also think that IBS is sometimes over-diagnosed. I’ve certainly heard from people who have been diagnosed with IBS after only a few weeks of symptoms, for example, which seems bizarre and doesn’t follow the standard diagnostic Rome Criteria at all. Plus, some people who have diarrhea after gallbladder surgery get told they have IBS, whereas others are told they have bile-related diarrhea. Don’t you wish we just had an IBS blood test!
The men versus women question is interesting too, and as you say the usual viewpoint is that more women are diagnosed, but this could be because men are more reluctant to go to their doctor. There are some countries where more men than women are diagnosed, such as India, but again that may be more due to doctor-visiting behaviour than anything else.
Amanda – I’m very sorry to hear about your loss. Unfortunately medical staff are just as prone to mistakes as the rest of us, and so we should never feel worried about asking for a second opinion.
Anon – I feel we are talking about two different things. I was referring to people who have never seen a doctor and are simply trying match their symptoms to a list they find somewhere. I wasn’t talking about people who have visited doctors and found that they are reluctant to diagnose anything. I’m sorry to hear about your situation, that sounds very frustrating.
Hi,
Please can someone help!
Im 18, female and approx 3 months ago I experienced some gassiness, nausea, extreme fatigue and diarrhea. After about 1 week of these continous symptoms, weight loss (as I loss my appetite completely) I decided to visit my doctor.
To cut a long story short, I was asked to complete various stool samples (yuk!) and blood tests including that for Ceoliac Disease. All came back “normal”. As you may have guessed, I was diagnosed with IBS and this was approx 1 month ago now.
The diarrhea shortly disappeared and not that I want to tempt fate, but thankfully I havent had it since. I have noticed a new symptom being stomach bloating. I dont actually feel bloated but my lower stomach bloats out after every meal and I become very windy. I am cautious what I eat and I am a fairly healthy eater (I dont deprive myself of some chocolate cake or the odd takeaway though).
Unlike most people with IBS, I do not notice anything in my diet that makes me feel worse. Neither have I ever (fingers crossed) experienced any kind of pain or cramps in my stomach or when having a bowel movement. My symptoms are very much at a plateau everyday and there will be odd times throughout the day where I may feel abit “dicky” but other than that I feel OK. After evaluating my symptoms and reading other peoples stories, I concluded that I must be suffering a very mild form of IBS.
However, lately, I have noticed that some of my family members and now my partner has been experiencing the exact same symptoms as me, if not worse. My partner especially has been experiecing persistant diarreah and cramping (unlike me) and often bloats out after meals which is something he has never experienced before either. We live seperately so I cant imagine it is something we regularly eat and I have had tests to confirm that I do not appear to have a stomach bug or viral infection. As mentioned before, my mum has noticed very similar symptoms also and not ones that she has experienced before either. I find this very co-incidental and I am now questionning whether I do actually have IBS after all.
My symptoms do not seem to be brought on by stress (although I very rarely feel stressed) and neither by my diet (or the odd glass of wine).
All in all I am very confused and was hoping for someone elses opinion.
Just to conclude, my symptoms have vanished for almost a month now and lasted only a couple of weeks. Please can someone advise! Thank you. Ashley
Hmmm, interesting discussion re internet self-diagnosis. Sharing IMHO here…
I have been sick most of my life with GI illness, and not just a “little” GI issues, but MEGA SUPER DUPER issues. Went to lots of doctors who just said, “Oh, you have IBS, you need to learn to live with it” with no recommendation to see a gastroenterologist or ANYTHING. Only now we know I have IBS, Celiac Disease, SIBO, Pelvic Floor Dysfunction, severe Visceral Hypersensitivity, and the list goes on. While I did not give myself ANY of those diagnoses – they are in my medical record, written by a doctor’s chicken scribbles – if it had not been for the internet, I don’t think I ever would have lasted this long or known that I needed to request to see a GI specialist (thought they were JUST for people who had cancer, Crohn’s, or UC). My pain overcame my fear, however. :/
Still, I had fired about 5 GI’s before I finally found one who heard me when I said, “This isn’t JUST Celiac Disease and IBS – I know CD and IBS and I’ve gone to support groups in my city with these people…I’m much sicker than anyone I’ve met and I need you to tell me what’s wrong because I can’t eat!” This process of correct diagnosis took YEARS and meanwhile, the online support groups of people going through the same *junk* I was going through were my lifelines to sanity and the hope that someone might someday hear the desperation in my voice and doctor’s office tears.
But wow can the internet be dangerous, especially if you don’t have a medical background to be able to judge which research is well done and which is not. Whew! I have certainly come across some info that just leaves me scratching my head. LOL!