They May Not Be Your Best Friends ... but Doctors Need Love Too! Part Two
By Dave R.
July 10, 2012
Internet links shown in these posts are designed to provide more detailed information if required.
Let me start by saying that most of the information here is based on personal opinion, which you may or may not disagree with. However it does stem from a great deal of unwanted, personal experience with doctors and specialist hospital departments. Having also talked to doctors about many of the issues discussed here, I have realized that there are always two sides to every story. Living with HIV is a great big learning curve!
People have to find the happy medium between passive respect for the doctor and yelling at him or her because you don't hear what you want to hear. We also all need to make adjustments in our approaches and learn to use the wealth of new information available in such a way that a consultation with a doctor becomes a constructive and rewarding process for both sides.
If you use the Internet or health forums, to research information, this will often bring up more questions than answers and for that reason, it's a really good idea to write everything you want to know down on paper, before you go to your appointment. It's another time saver. One of the greatest causes of frustration is when the doctor more or less ushers you out of the room before you feel you're finished or furnished with enough information. The problem is that it is easy to forget that there are patients waiting and they have problems too. Time constraints are putting too much pressure on the system and although that's surely a matter for the administrators and their budgets, it doesn't help doctor or patient when they've got 15 minutes or less to get everything dealt with. It's up to the patient to save as much time as possible themselves and that's where sensible pre-consultation research and lists of important points can come in very handy. We've all been in the situation where you get home after a doctor's appointment and kick yourself because you forgot to ask this or that. Careful preparation can avoid that problem. Another possible tip is taking someone with you as support. They will remember things the doctor has said that you haven't and can remind you to ask things you may have forgotten. Most doctors have absolutely no objection to this, partly because they realize the value of a second pair of ears.
More Information: Getting the Best Out of Medical Consultations
Doctors also tend to have their own way of giving information. This involves using medical terms which are sometimes not within most people's vocabularies. Occasionally this may be a deliberate tactic, in that they know the patient is unlikely to understand and more likely to accept any given treatment without question. It is always advisable to ask the doctor precisely what he means, or to repeat a piece of information because you haven't quite grasped it. They may be irritated but you do have the right to understand everything that's happening to you. Apparently medical organizations recognize this and are working on improving their communication skills. Again, this may be a direct result of patients having far more knowledge of their own complaint than ever before. Always remember, you have a right to an expert opinion but not one that will blind you with science: telling a patient that the subject matter is too complex to explain in five minutes is, to my mind, not really an option.
More Information: Patient-Physician Communication: Why and How
For people with HIV the doctor's communication skills apply especially to the potential side effects of medication. We know that it's a question of risks versus benefits but doctors should explain that to you very clearly so you at least know what to expect. Of course, many doctors are reluctant to do this because of the hypochondria factor. Putting side effects into people's minds carries the risk of patients then looking for them at every turn. However, if a doctor tells you what's possible and what's unlikely and then what to look for, you will leave the surgery feeling much more aware of what you're dealing with and that will save time at a later date.
It's also true to say that many people living with HIV and various co-morbidities can become more aware of their own disease(s) than their doctors. My HIV-specialist is a caring and careful man; a general internist and a specialist in HIV but he practices 90 percent of the time in a hospital environment. The sterility of a doctor's consulting room bears little relation to real life. He doesn't always fully understand what living with HIV means in the day to day, real world, where the patient has to cope with many external influences. Very often things are black or white from his point of view and require treatment according to the book, when we all know that HIV is a whole box of tricks which doesn't follow the rules. He does listen to his patients though and not rush them out before they've told their story. Although he is renowned for keeping people waiting, I can forgive him for almost anything because he listens so well. So, although the doctors may find it a little disconcerting, we have to impress on them that we do listen to our own bodies and have learned to trust various signals when something is wrong.
Patients also need to realize that doctors are not all the same and certainly in the case of HIV may have differing levels of experience and expertise. The home doctor is not a specialist in HIV, or any of the potential secondary infections, but is invaluable as a first port of call regarding the sorts of problems that both we and the rest of the population meet on a daily basis. Keeping him or her up to date with your HIV status and general condition will help him or her understand the nature of anything else that may happen to you. In theory the specialists should regularly write to the home doctors with reports of their own findings, but in the real world this may happen only sporadically. Even if you just hand over a piece of paper with your latest test results on it, it won't take up any time but will help your home doctor better understand your general health. Of course, some people prefer that their home doctor is kept out of the picture, especially in lands and culture where HIV is still an extremely sensitive subject, but this is a shame and a possible hindrance to future effective treatment. It's all about trust though, and the patient must do what he or she feels is best to protect his or her present situation. If discretion is necessary then that's the way it is.
There will always be cases where things go wrong between doctor and patient. You just may not click, or you may be unsatisfied with the treatment and approach you are receiving and as a result, the trust can break down. Many countries have the option of a second opinion and whilst many patients may see this as a hurdle, involving starting again with someone new, it may be of more benefit to you in the end. Like all relationships, human beings are involved and not everybody gets on with everybody else. It's just a fact of life and mostly nobody's fault. If that's the case, then it may be best to realize that your health is paramount and move on to someone, or somewhere, else. Similarly, if your doctor has made a mistake, your first reaction may be of anger and frustration because doctors are supposed to be infallible. Realizing that they are human beings with long working days and incredible pressures too may help you avoid long and ultimately frustrating complaints procedures. To move on and make it right with someone else may be the philosophy that saves you a lot of heartache.
More Information: In Better Health: Doctor-Patient Relationships Improving
You're HIV positive, so the likelihood is that you'll be spending some time in various hospital departments and doctors' waiting rooms. Making that as pleasant and constructive an experience as possible may turn out to be a social skill both doctors and patients will be concentrating on more and more in the future. So if it's possible to sum up the best approach for receiving the best of care then some of the following points may help you make decisions.
It's a complex social interaction between doctor and patient and it's changing very quickly with the times. Some doctors and medical authorities are still not aware of the new possibilities that patients have to arm themselves with information. Some still feel that their position makes their opinions unquestionable and fail to take patients seriously. Equally some patients are too quick to judge, or find it difficult to communicate with doctors, or "self-destruct" by becoming angry or frustrated. It's sometimes a delicate balancing act but communication and the building up of trust and good relationships are what we all must strive for; it's in our own interests. Similarly, we don't have to put up with sloppy treatment, or inappropriate personal interaction. It is how we deal with it that will determine how well we are treated. We need the medical profession on our side and they need us to help them understand what it is to live with HIV and its associated medical problems. Still some work to do then.
More information about the doctor/patient relationship can be found in the following links.
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.
Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.
However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.
I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.
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May 14, 2014 - The Painful Reality of Neuropathy: A Blog Entry by Dave R.
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January 22, 2014 - Please Don't Leave Me Because I Need You: An HIV Take on Separation Anxiety -- A Blog Entry by Dave R.
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