I have a close friend with severe IBS (irritable bowel syndrome). It has recently gotten worse and she seems to be in more or less constant pain now.
In the past she saw doctors for this but unfortunately, after a number of incidents, she has completely lost trust in them. This included multiple GPs (general practitioners - we are in the UK) who just would not listen to her, an aggressive specialist who left her in tears, and other specialists who just kept running tests over multiple visits and never actually suggested any solutions.
Given that the symptoms have gotten worse I really believe she should see a doctor again, but she is not willing to do so.
Any ideas for how to help her trust doctors again so she can get proper treatment?
In case it helps, there is one pharmacist she trusts who she sometimes goes to for advice.
If she wants someone who will listen and offer solutions, she can evaluate someone for those qualities during her first visit. She doesn’t have to commit to anything.
Sometimes a medical problem has a psychological component and you need a doctor who can deal with people. They are out there. Just get her in a room with a good doctor and let them do all the work (if they’re good, they will know how to overcome trust issues).
Life often sends us a pebble, before clobbering us with a boulder. The pain she’s currently experiencing may be the pebble. Imagine how much pain the boulder will bring!
Ignore the pebble at your peril, is what I usually tell people!
You might consider having her see a psychologist or psychiatrist. This will allow them to address how to overcome the trust issues. And they might also be able to provide referrals that are a better fit than the other physicians she’s had.
If you find out let me know, I’m in the same boat.
Tell her to find a web forum devoted to her health issue. People there can be a great source of experience and knowledge about testing and treatment. In my experience, I’ve gotten far better advice doing that than I did from a physician alone who tended to pick the laziest solutions they could. Plus maybe some will have recommendations for finding a good physician who is nearby.
I agree that she ought to try another doctor, or several if necessary, but why the heck should she “trust” any of them? She should research any suggestions of tests or treatments they advise and make an informed decision, as should we all, not trust that they are going to do anything useful just because they are doctors.
The diagnosis with ongoing testing sounds a little odd. Was it the doctors who decided it was IBS? Or did your friend self-diagnose and then try to get the doctors onboard?
I ask that because IBS itself does not have a test. In IBS, the digestive system looks like it should be working perfectly well. Doctors diagnose it by testing for and ruling out other things that could be causing the symptoms. And they are going to test for all of the other things before making an IBS diagnosis because many of the other conditions carry an increased risk of cancer.
Read through the Mayo Clinic description of IBS. It includes the lists of lifestyle changes that are the first attempt at management. You have to click through about ten pages to read it all. Each page is a small subtopic. You need to read this before you get any further involved. It even has a page of alternative treatments that some people find helpful.
This is not the sort of thing that can be just given a pill and fixed. The patient has to take charge of their condition. If she’s talking about not having the time to go to the doctor, then maybe she’s been given the information that she needs, but has decided not to do the basic stress reduction and/or the diet monitoring that she’s been told she needs to do.
I agree with Wesley Clark that web forums would be a good idea. There may be local support groups that she could attend. If she doesn’t have time for those, then perhaps she’s chosen her level of management.
I think the best thing you could do would be to find her a support group for people with IBS or similar conditions, and leave it at that. But, really, the best thing to do would be to just support her while she makes her own medical decisions.
Please, please don’t think that you can “help her trust doctors again.” It is so hard for people on the outside to understand what people with hard-to-diagnose, chronic, or difficult-to-treat conditions really go through with medical care. We’re conditioned to think that going to a doctor will get your medical problem fixed. If doctors have written off your suffering, if you’ve been put through all sorts of invasive, expensive tests and shuffled around between different doctors all to no avail, then of course you would feel betrayed, and of course you wouldn’t want to subject yourself to the same pain and humiliation, not to mention wasted time and money, when you have no reason to believe that this time will be any different.
Please validate her feelings as something that are real and true, and something understandable that you can empathize with. Do you really think that you can be the one person who rushes in and magically fixes things when she couldn’t do it herself with what sounds like much time, grief, and effort? How painful and isolating do you think that attitude would feel, to her?
The reason you should trust doctors, ultimately, is that they know far more than you about how your body works. They’ve spent many years studying, you can’t replicate that with a couple of hours on Google.
Yep, that’s my POV as well. I’ve had the same doctor for a long time. We are friends, and occasionally have a few drinks together. He stays relatively current with his field, but I wouldnt say i “trust” him.
I had been taking Lipitor at bedtime on the advice of my doctor. I came across some information about Lipitor being different compared to other statins in this regard. Emailed it to my doctor, who hadn’t seen the research. We both started taking our Lipitor in the morning, which is more convenient.
Doctors are also generally speaking likely to be burnt out and short on time. A Dr will know far more than an untrained person but they will have low motivation and lack of time to find a cause and solution. The days when computers diagnose conditions are prescribe treatment regimens can’t come fast enough.
People who don’t trust doctors tend to do so because of disillusionment. Endless inconclusive tests, rude and dismissive medical professionals and a lack of results takes a toll. And the woman in question lives in the UK where health care is covered by the state. She doesn’t even have to worry about thousands of dollars in useless medical bills like people in the US would.