Ways To Piss Off People Living With Neuropathy!

Today's post from huffingtonpost.com (see link below) may seem light-hearted at first but can be real source of aggravation for people living with chronic pain and neuropathy. Have a copy printed and ready to hand out to the next 'well-meaning' friend or relative who dares to use any of these approaches!

8 Ways to Annoy a Friend With a Chronic Illness
Lisa Copen Founder of National Invisible Chronic Illness Awareness Week and Rest Ministries -  Posted: 09/10/2012

Roughly half of the U.S. population lives with at least one chronic condition, such as diabetes, lupus, multiple sclerosis, chronic back pain, migraines, and others. So one would assume that most people know basic etiquette skills when it comes to what to say to one who is chronically ill.

For instance, we all know that you shouldn't kick the tire of a wheelchair someone is sitting in, so why is it okay to tell someone with an invisible illness, "You don't look sick to me."

Here are some ways to quickly annoy an ill friend, and possibly even destroy the relationship.

1.) Remark on her treatment. "I'd be sick too, if..."

"If I saw all those doctors ... sat around waiting rooms ... never had to get out of bed ... took all those medications..." "If I was as sick as you say you are I would be trying acupuncture, supplements, something natural." "Those doctors know how to cure you but they wouldn't make any money then."

2.) Tell her she needs to fight the disease.

When she makes a wise choice about her limitations and pacing herself, she doesn't need your motivational speech. For example, if she cancels plans on you, don't fire back with, "You are letting the disease win! You have to fight it. You have to want to be well! Be strong!"

3.) Get excited to go somewhere because you can use her disabled parking permit.

None of us wants these placards, and we use them on only the most painful days. If you are driving, we may ask you to drop us off and then park the car, so the spot can be saved for someone else who needs it. Don't insist to use it, jump out of the car, and smile haughtily at a passerby, and then brag to friends, "Guess where we got to park?"

4.) Say, "You are so lucky because..."

"You are so lucky because you don't have to work... You don't have kids. You are so lucky you don't have to travel." Or here is a common one, "You are so lucky to be diagnosed with this at such a young age." Um... okay.

5.) Tell her that her illness is caused by stress.

"You need to slow down, you need to cope better, you are under too much stress." Basically it sounds like you are saying, "Most people -- including myself -- can cope with stress fine, but you do so poorly at it, you've brought this disease on yourself."

6.) Call attention to her assistive devices.

"You don't really need that cane. I think you are relying on it too much." "Once you start to use a wheelchair, you will forget how to walk." "I am not going to push you, so if you want to ride you will need to just learn to drive a scooter." Her appearance is also up for grabs if you don't value the friendship. "I would just die if I had to wear those shoes. I love my heels too much." "Maybe if you put a little effort into your appearance you'd feel so much better."

7.) Tell her about the cure you heard about.

Trust me, she has already heard about it -- the water, the juice, the chocolate, the supplements, and yes, even the reindeer antlers and mushroom tea. You may feel the need to share what you have heard, but she will likely tune you out as "one of those people," especially if you tell her you are a distributor.

8.) Ask her how she is and then try to one-up her story.

"Oh, you don't know pain until you have had run a marathon." "You think you're tired? Try being a single mom, while working." "Oh, that is nothing! You won't believe what happened when my neighbor's brother's son had surgery!"

Watch your words. When you go to another country the culture and language is different. Words that you say at home may be considered impolite or even obscene. People have had different experiences and so they interpret your words differently. So it is in the world of the the ill.

When you tell a workout buddy, "Hey, don't give in. No pain, no gain, right?" they interpret it much differently than one who lives with a chronic illness.

Talk to your friend. Say, "I have realized there are times when I have said the wrong thing. Can you tell me some things that encourage you -- and what irritates you? I don't want to be one of those friends you would rather avoid."

It sounds corny, I know. A bit like an assignment a counselor would give you. But we all want to be acknowledged, validated, and understood. If you ask this, your friend may still fall over, but it will be out of her surprise, not because you insisted she leave her cane in the car.

Lisa Copen is the founder of Invisible Illness Awareness Week, celebrating their 10th year September 10-16, 2012. Join her at http://invisibleillnessweek.com for the 5-day free virtual conference and download a free 80-page ebook, "263 Tips To Do More Than Just Get By."

http://www.huffingtonpost.com/lisa-copen/etiquette_b_1864792.html

Choices People With Chronic Pain Must Make

Today's post from psychologytoday.com (see link below) is another well-thought out article by Toni Bernhard and looks at the choices people living with chronic pain face on a daily basis. As with all so-called 'self help' articles, many readers have a built-in resistance to being told what to do and how to do it but this article does make some very valid points. People living with long-term neuropathy may recognise many of the dilemmas mentioned here and may find the advice given, quite helpful.

5 Tough Choices You Face When Chronically Ill or in Pain
Chronic pain and illness require the courage to make tough choices.
Published on January 28, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Suffering from chronic pain or illness—or, as is often the case, both—is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five of them that we continually face.

1. Do we keep our health problems private or do we talk openly about them?

If we talk about our health problems, some friends and family members may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former selves.

On the other hand, if we keep quiet about our health issues, we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

2. Do we ignore a new symptom or have it checked out by a doctor?

If we raise a new symptom, will our doctor think we’re being oversensitive or that we've become a hypochondriac? On the other hand, a new symptom could be the sign of something serious. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves.

3. Should we risk trying alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, using up what little energy I had, combing the Internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. People spend thousands of dollars on false cures. I know because I've done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These are tough choices: what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking.

4. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.
It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health...but I'm working at it.

***

It's hard work to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

http://www.psychologytoday.com/blog/turning-straw-gold/201301/5-tough-choices-you-face-when-chronically-ill-or-in-pain

Massage Helps People with HIV and Neuropathy

Another interesting article from the Australian, positivelife.org.au (see link below) describes one man's way of giving back to the community. Someone to massage your hurting body for you seems to me a fantastic way to make you feel better. No 'happy endings', or commercial rip-offs, just careful massage carried out by someone who knows what he or she is doing. It's an idea that should be promoted in as many places as possible, though finding the volunteers with the right intentions might be easier said than done. Hats off to Mr Page.

Touching bodies - and souls
by Greg Page - •This article was originally published in the Oct-Nov 2011 edition of Talkabout

Greg Page reflects on what leads him to donate an hour of his time each week to massaging HIV+ clients.

Once a week I do a volunteer massage for HIV+ patients. As a trained massage therapist with over five years of experience, I'm constantly asked the same question by my clients, who are almost invariably middle-aged men: "Are you one of us?" By which they actually mean, "Are you HIV positive too?"

There is always a real sense of relief in their voices when I reassure them that, yes, I understand the nuances of niggling neuropathy, constant painful twinges and strange, doctor-confounding ills that can befall a person who is a long-term sufferer. You see, I'm a massage therapist who has also been HIV+ now for eight years.

I actually began my training about six years ago at a course offered by an instructor who wisely believed it a good idea to give newly-HIV+ men an insight into their bodies, what makes them tick and what makes them tick better. Massage therapy is a skill for life, as well as a skill that can help and heal, for both the giver and the receiver. My massage training took about six months to complete. It included two hours per week of intensive anatomy lessons, with a book to practice with, not a body, in case you're wondering. I had to learn multisyllabic phrases and convoluted names for parts of the body that normally only specialist doctors would know off my heart. In my course, of the 10 HIV+ men who began the training, only six finished. One disappeared never to be seen again, one became a crystal addict, another decided it was all too hard and another took his first three months of training and turned it into a business, touting himself as the "massage therapist who gives happy endings".

96 percent

I finished my training with a 96 percent score, something I was very proud of, although I wasn't top of my class – a hunky Canadian-born guy scored 99 percent (though I did better than him in the practical assessment!)

Over the course of our training, our group constantly practised on each other, but the biggest challenge we faced wasn't concentrating on what we were doing or making sure we were doing it properly. It actually came when we had to massage a group of HIV+ women.

None of us was familiar with women's bodies and it was a truly eye-opening moment. As gay men we are generally so unfamiliar with the curves and nature of a woman that it took some major readjustment for us as massage therapists to accommodate them. It was a good lesson in what was to come as a masseur – everybody is different and some bodies are more different than others.

Although our course had been offered free, the deal we all agreed to was that on successfully completing the course and qualifying, we would have to allocate 60 hours of free massages to community services. Somehow for me that 60 hours has now become six years of offering my services to the HIV+ community.

Troubled bodies and minds

Most of the men I massage are relatively advanced in their HIV+ prognosis. Some have lived with it for over 20 years. One man told me he knows he has been positive since 1980, if not before. He witnessed his entire circle of friends, lovers and ex-lovers die before his very eyes in those early first years of AIDS. He is now somewhat bitter, quietly angry and rather fed up with life. The massage I give him every few weeks helps alleviate the pain not only in his riddled body, but his troubled mind.

The one question I always like to ask my clients is what their job is. Some are still working and on my bench, laid out in front of me, I've had professions as varied as shopkeeper, actor/model, ad agency boss, librarian, historian, labourer, insurance man, personal trainer, healthcare worker, recovering addict and full-time nudist. Some of the men have been on sickness benefits for so long they can't even contemplate the idea that they could once again be valuable members of the workforce. They never thought they would live this long, let alone be healthy enough to return to the jobs they assumed they were leaving to go and die. The meds changed things and kept them alive. Some of my clients are happy about this, yet others feel somehow guilty they survived. Some like to talk about how they feel, with the massage helping to ease their suffering and their inhibitions, while others prefer to just simply enjoy the serenity of being able to have their body caressed and touched like they haven't been touched in a long time.

It's a powerful reminder to me as to how important the sense of touch is. Although we often think seeing is believing, through my work with clients on the massage bench I have come to see that the greatest gift I can give to those who are suffering, or who have suffered hard, is simply that of a compassionate, caring touch.

No words

Sometimes there are almost no words before, during or after our one-hour sessions. Some people choose to lose themselves for the 60 minutes, regaining a connection with their body tissue that years of toxic medication, intensive doctor prodding and a raft of severe illnesses have left tenuous and tense. If I can help ease that tension, then I feel my work has been a success.

Generally my clients leave after the massage feeling the best they've felt in a long time. "I feel like I'm floating" is a piece of feedback I receive constantly. That's when I know that not only have I done a good job, but I made the right choice in volunteering my services, rather than charging a fee and making it my full-time profession.

It's a shame there are not more people from the HIV+ community who get involved in complementary therapies. Not only does it help you give something back, but also gives you a link to the past of the AIDS epidemic. It's a way to help ease those survivors through the new era of manageable chronic illness.

More alive

One week recently I massaged a blind man who brought in his guide dog, which sat quietly as his owner groaned his way through our session. It was as if my client had not felt a human hand near his weakened body in a long time. He shook my hand firmly afterwards and I could tell he felt more alive.

I truly get a strong sense of satisfaction when I finish my volunteer session each week. Not only because I know I'm doing something good for others, but because I'm actually doing something good for myself. You should try it some time – you might find it as soul-enriching as I do.
Greg Page

http://positivelife.org.au/talkabout/2011/oct-nov/touching-bodies-and-souls

EBOLA OUTBREAK COULD INFECT 20 000 PEOPLE

The deadly Ebola  outbreak hitting four West African nations could eventually infect more than 20,000 people, the World Health Organization announced Thursday.

Already the largest Ebola outbreak ever, the viral infection has produced 3,069 cases so far and killed 1,552 people in Guinea, Liberia, Nigeria and Sierra Leone.

Nearly 40 percent of the total number of reported cases have occurred in the past three weeks, the health agency said.

This far outstrips any historic Ebola outbreak in numbers. The largest outbreak in the past was about 400 cases," Dr. Bruce Aylward, WHO's assistant director-general for emergency operations, said at a news conference, the Associated Press reported.

Part of the problem, he said, is that the outbreak is occurring in large cities and broad sections of the affected countries.

What we are seeing today, in contrast to previous Ebola outbreaks: multiple hotspots within these countries -- not a single, remote forested area, the kind of environments that have been tackled in the past. And then not multiple hotspots within one country, but international disease," Aylward said.

In response to the crisis, the U.N. health agency unveiled a battle plan Thursday that calls for stopping Ebola transmissions within six to nine months, while "rapidly managing the consequences of any further international spread," the WHO said in a news release.

The plan calls for spending $489 million over the next nine months and enlisting 750 international workers and 12,000 national workers, the APreported.

Also Thursday, the U.S. National Institutes of Health (NIH) said it would begin testing an experimental Ebola vaccine in humans next week. It will be tested in 20 healthy adults in Maryland to see if it's safe and able to produce an appropriate immune system response.

The vaccine was developed by the U.S. National Institute of Allergy  and Infectious Diseases and drug maker GlaxoSmithKline. It will also be tested on healthy volunteers in Great Britain and the West African nations of Gambia and Mali, the NIH said.

Earlier this week, Dr. Thomas Frieden, director of the U.S. Centers for Disease Control and  Prevention  visited Guinea, Liberia and Sierra Leone, where he acknowledged that the virus currently has the "upper hand" in the outbreak.

"Lots of hard work is happening, lots of good things are happening," Frieden said during a meeting in Liberia, the AP reported. "But the virus still has the upper hand."

"Ebola doesn't spread by mysterious means, we know how it spreads," he said. "So we have the means to stop it from spreading, but it requires tremendous attention to every detail."

Unlike diseases such as tuberculosis or flu , Ebola isn't spread by breathing air from an infected person. Transmission requires direct contact with blood, secretions, organs or other body fluids of infected living or dead persons or animals, according to the WHO.

Symtoms

Ebola, one of the world's most virulent diseases, kills up to 90 percent of people it infects. Symptoms include a sudden fever intense weakness muscle pain,headache  and  sore throat  This is followed by vomiting and diarrhea ,  rash.  poor kidney and liver  function and, in some cases, both internal and external bleeding.

Many of those killed during the current Ebola outbreak have been health care workers.

Prevention

According to the CDC, health care workers must be able to recognize a case of Ebola and be ready to use "isolation precautions or barrier nursing techniques." Barrier nursing techniques include:

Wearing protective clothing, such as masks, gloves, gowns, and goggles;

Using infection-control measures, including complete equipment sterilization and routine use of disinfectant;

Isolating patients with Ebola from contact with unprotected persons.

The aim of these techniques is to avoid contact with the blood or secretions of an infected patient, the CDC said.

Should Older People Take Advantage Of Available Vaccines

Today's post from bgdailynews.com (see link below) may seem slightly off-topic as far as this blog is concerned but actually, very little publicity is given to the fact that vaccinations can be very useful for adults with other conditions, as well as children. It's important to know which vaccinations are available and whether they're available in your area. As far as neuropathy patients are concerned, the so-called shingles vaccine is generally available to older people but possibly not publicised because of rising costs in health sectors - nevertheless, it's an important vaccine if you've had or are susceptible to shingles and/or neuropathy. Other vaccines mentioned here may also be of interest to people living with neuropathy - discuss it with your doctor.
 

Vaccines important for adults to lower exposure to diseases  
By ALYSSA HARVEY aharvey@bgdailynews.com Aug 23, 2015

When many people think of immunizations, they automatically assume they are strictly for kids, but adults need them as well.

According to the U.S. Centers for Disease Control and Prevention, the more people who are vaccinated, the lower the possible risk of anyone’s exposure to vaccine-preventable diseases.

“The challenge is keeping up with vaccines that you’ve had. People forget it’s important to keep track,” said Julie Anderson, practice manager at the Glasser Clinic.

“That’s one of the advantages of having a family doctor because we keep track of that.”

Being immunized is important even as people grow older, said Dr. Jayashree Seshadri, an internist and employee health physician at The Medical Center.

“As you get older your immunity comes down and you’re susceptible to all kinds of illnesses,” she said.

Many vaccinations will provide a booster effect, Anderson said.

“The immunity doesn’t always last forever,” she said.

World travelers need to be immunized, Anderson said.

“If somebody’s traveling to an area of the world where they might have more or different diseases than we have here then you can get vaccinations for them,” she said.

A lot of people are asking for the whooping cough vaccine, Anderson said. The whooping cough immunization, which is part of the tetanus, diphtheria and pertussis vaccine, also known as Tdap, is recommended by the CDC to be gotten in one dose and then a booster dose every 10 years.

“Sometimes kids get whooping cough, but we have a mild infection and give it to kids who have not been immunized,” said Seshadri. “It’s very important when you’re around a newborn child you are immunized for the whooping cough.”

People also ask about the shingles vaccine, Anderson said.

“If you’ve had chicken pox as a child, you’re more prone to get shingles as an adult. (Vaccines) may prevent that. No vaccination is 100 percent guaranteed,” she said. “Check with your insurance carrier to see what vaccinations they cover. Medicare covers shingles vaccine in a pharmacy setting only, and that’s in an attempt to save costs. You have to have a prescription for that.”

The shingles vaccine is recommended for people 60 and older, but the U.S. Food and Drug Administration has approved them for ages 50 and older, Seshadri said.

“The only problem is that it is a live virus vaccine, so you have to talk to your doctor about whether or not to get it,” she said.

Fever and stress can cause the dormant chicken pox to become shingles. Complications from shingles include painful lesions and nerve pain called neuropathy that lasts after the lesions heal.

“The older you get, the opportunity of getting shingles is higher. The vaccine is designed to prevent the flare ups,” she said.

“Even if you get the flare ups they’re not as severe as they could be.”

Another vaccine elderly people over 65 should think about is for pneumonia, which can cause complications and death. Younger people with certain health conditions – including diabetes, heart failure, sickle cell disease and HIV – may also be recommended to be immunized. The vaccine is given in two doses, Seshadri said. One of them has been developed in the last two years.

“Even if you were vaccinated with the old vaccine, it’s important to think about the new vaccine,” she said.

It is vital to have flu shots every year, Seshadri and Anderson agreed.

“We know that flu is a contagious infection,” she said. “It can be mild or severe and sometimes causes death.”

Other vaccines Seshadri recommended include a tetanus shot every 10 years; the meningitis shot, particularly for those who will live in a college residence hall; and the human papillomavirus shot.

“We’re trying to catch them as kids, but if you are not vaccinated you can get them as adults,” she said of the human papillomavirus vaccine.

— For more information about adult vaccination schedules, visit the CDC website at cdc.gov.

— Follow features reporter Alyssa Harvey on Twitter at twitter.com/bgdnfeatures or visit bgdailynews.com.

http://www.bgdailynews.com/news/vaccines-important-for-adults-to-lower-exposure-to-diseases/article_8a4fd809-f808-533e-8a0a-7b705220814a.html

The Doctor Patient Relationship For People With Chronic Pain

Today's post from thebody.com (see link below) follows on from Dr. Rob's excellent letter to patients in yesterday's blog. We sometimes underestimate the value of a good relationship with our doctors and get so caught up in our own illness, that we take them for granted and expect faultless treatment every time. At the same time, doctors are also not perfect. They're human and make mistakes but relationships like this will serve both parties best if they are based on trust and respect. This article talks about exactly that.

They May Not Be Your Best Friends ... but Doctors Need Love Too! 
By Dave R. July 3, 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!

I often find myself having conflicting feelings about doctors. I've got several specialists, who take care of various complaints both pre and post-HIV and a home doctor who deals with everyday ailments and tries to keep an eye on the big picture too. Sometimes I'm enormously grateful that I live in a country where that's possible and where I don't have to pay extra for any basic medical services. Other times, I seethe with frustration at mistakes, or wrong diagnoses, or misguided treatments.

I've had five different HIV regimes and their side effects to deal with because details of my original resistance to HIV drugs were lost in a move from one city to another. I've been "fired" by an irritated lung doctor, despite having lung emphysema, because I refused to give up smoking when he said I should (six months later I did it anyway). I had to go to Germany, at great expense, to get a series of private MRI scans to prove to my rheumatologist that the problems in my spine weren't between my ears after which I just moved on from him. I've also had to work my way through the ineffective pantheon of drugs used to treat neuropathy, when I had already been told that they probably wouldn't work (the neurologist was right there). So I've got some experience with doctors and not all of it was good. That said; my home doctor is a sweet and understanding younger woman, way older than her years; my HIV-specialist takes me seriously, admits his mistakes and admits when he just doesn't know, and my neurologist's door is always open if I need him. I can't complain, I really can't because all the years of experience of doctors and specialists have taught me one thing: they're doing their best; sometimes under very difficult circumstances.

I'm of a generation that was brought up to believe that what the doctor said was law and the absolute truth. The doctor was regarded as an upstanding member of society, ranking alongside the best teachers, the clergy and law enforcement officers. Things have changed since the '40s, '50s and '60s, however, and a culture of litigation has sprung up to buy lawyers the lifestyle they always wanted and expose the all-too-human failings of the above-mentioned pillars of society. This has led to mistrust on all sides. Doctors have become defensive and hesitant and patients have become questioning, distrustful and sometimes aggressive in their demands. Put this alongside the pressure that medical personnel are under due to financial and time restrictions and relationships have become much harder to build.

More Information: Medical Liability Litigation: An Historical Look at the Causes for Its Growth in the United Kingdom

Medical authorities and hospital committees are demanding quicker turnover, less waste and adherence to budgets. Young doctors are being taught how to deal with "difficult" patients, irrespective of their complaints, and a part of their job has become social management and damage control, instead of solely dispensing medical advice and treatment. Patients also now have the Internet to back up their claims and fears and in the last 30 years, a doctor's work has become a minefield where mistakes are unavoidable and the stress has never been higher. It's absurd really that in this day and age where medicinal and technological advances have given doctors more ability to heal patients than ever before, that constructive human communication in the consulting rooms has never been more difficult.

More Information: Patients Have Become Proactive in the Philippines

The phrase, "A little learning is a dangerous thing" (Alexander Pope, 1688-1744) has never been more appropriate for the modern doctor/patient relationship. Although doctors can offer more in the way of treatments than ever before, patients are also demanding more and arriving armed with pieces of knowledge and hearsay, gained from the Internet and social media. This information can be well-researched and be sourced from reputable sites but often, people visit one site and take the information presented there at face value and see it as absolute truth. The doctor then has to spend his time tactfully correcting the patient's inaccurate findings and that can be difficult in cases where the Internet is somehow seen as more trustworthy than the doctor.

More Information: Humanizing the Doctor-Patient Relationship

A case in point is in the field of HIV-related neuropathy. Both HIV and neuropathy are incurable and have many shapes and forms. That makes it perversely easier for many unscrupulous, independent, commercial enterprises, clinics and alternative therapists to go online to make claims for effective treatment and sometimes cures, which are sometimes not only untrue but at times dangerous. The problem is that there is always a certain amount of truth to be seen on the sites. The patient sees this; assumes that everything is fact and takes that information to the doctor or specialist who is treating them. The resulting conflicts of views immediately waste an enormous amount of time and set up unnecessary tensions within the session, when time is limited and the best treatment has to be found. No wonder many doctors see the Internet as an annoyance rather than the help it should be. Nobody wants to see the Internet policed but maybe someone should be keeping a closer eye on exaggerated claims in the medical sphere and taking steps to remove sites that make false claims (easier said than done) and promote sites that are trustworthy.

The person looking for medical information should therefore adopt the "let the buyer beware" attitude. You don't always trust claims made by commercial advertisers of everyday products, so why would you take medical information on a website to be gospel truth? It's always advisable to go to respected sites and then check and double check that the same information appears on other reputable sources. The sad truth is that there will always be people who are prepared to put your health at risk in order to make money.

Communication Is the Key

That said doctors themselves could make much more effort to acknowledge how valuable the Internet and social sites can be. The idea of creating a dialogue with a patient rather than a monologue where the patient answers questions and then sits and listens, may actually be helped by patients' access to the Internet. They can arrive at a consultation with enough basic knowledge to save time and get to the crux of the matter. Making your doctor aware that you first want to know what's wrong with you and then what the doctor is going to do about it will be greatly helped by your own willingness to do some ground work. The difficulty often arises, if either side succumbs to the temptation of arrogance. You really don't know all the answers and the doctor needs to feel that he or she's still in control of the situation, so neither partner can afford to be overbearing.

If you're ill, you may well be emotional at that moment. The doctor should be aware of that as a matter of course but you can help matters by trying to stay calm and concentrating on how the doctor can best help you. Getting angry, however understandable, is a sure way to ruin any constructive relationship with your doctor. He or she will immediately become defensive and given the alarming rise in dangerously aggressive patients, this may be justified. A consultation and the ensuing care should form the basis of an equal partnership where respect for each other is paramount.

More Information: Tips for Staying Calm in the Emergency Room

How we can get to this point is a matter of cultural adjustment and the medical profession must realize that people are not only quite capable of checking up on any information they are given but will also lose trust if they are palmed off with platitudes. It's all about being taken seriously but that applies to both sides. It will help greatly if you can convince your doctor that you're an intelligent person who deserves to be taken seriously but demanding anything based on what you've learned elsewhere, is not a good start. In the case of HIV and several associated illnesses like neuropathy, doctors will not have all the answers and should be able to admit that in a good relationship with their patient. Only then can both parties move forward to achieve the best possible solutions.

More Information: Can You Trust Your Doctor? Get the Truth at Your Next Visit

Unfortunately, recent developments in hospitals and doctors' surgeries have led to the medical profession being ultra careful with both what they say and how "close" they feel they can get to their patients. Aggressiveness and violence, either due to emotion, or drugs, or alcohol, or even cultural misunderstandings, have created an atmosphere which isn't always conducive to real dialogue. The numbers of medical staff who have been physically and verbally assaulted is staggering and a relatively modern social trend.

More Information: Approaches to Coping With Aggression in Medical Situations

As already mentioned, patients have also learned the power of litigation and doctors fear it like nothing else. This has led to patients subconsciously having the idea that the "balance of power" has shifted in their favor and the feeling that they are entitled to demand immediate, or extra attention. Raw emotions, or alcohol, drugs, or even extreme pain, can spark confrontations which unfortunately often get out of hand. Little wonder then that the medical profession is more nervous than ever. Many doctors look back longingly to the time when their word was law and argument from the patient was rare. It's happening in the education profession too, often with the same results; as parents demand more and more from long-suffering teachers and become aggressive if they don't get it.

More Information: Fears of Malpractice Litigation

That all said many patients, especially older people, are reticent and just don't want to appear "pushy" in the doctor's consulting room. They weren't brought up that way and it's often difficult for doctors to coax the correct information out of them, especially if it's perceived as being of an embarrassing nature. Many older people with HIV may be able to relate to this. However, today's society is unfortunately one where he who shouts the loudest often gets what he wants. When all's said and done, you're not there to make your doctor feel good (though if it helps, it can be a good tactic!) but to get the best treatment possible.

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 ill, 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.

Bring a friend
Whether in a hospital bed or in a consultation, a patient may receive better attention than if they were on their own. It's sad but true and we should all be aware of people who are on their own in life, especially the elderly. There are enough horror stories of neglect when there's no one to witness it, so offering a little of your time to accompany someone who lives alone may be of more value than you think.

Keep your cool
Although you're ill and under stress and may have to go through endless bureaucracy before you even see the doctor, it won't help if you bring that emotion to the consultation. Tell the doctor how you're feeling and why but if you can explain it calmly you will have much more chance of sympathy and less chance of anti-depressants being hurriedly prescribed.

Don't exaggerate, or play down your symptoms
Your doctor will quickly see through you if you do either and may come to conclusions that lessen the effectiveness of your treatment. Don't feel guilty, we've all done it because we're either desperate to convince the doctor that we're really not well, or hate complaining and feel we are somehow weak, if we moan.

Find your hidden sense of humor
This can diffuse what is normally an abnormally formal situation, especially with a new doctor. If you smile or make jokes at your own expense, you'll come over as more relaxed and put the doctor at ease too. However, the latest smutty joke, or incident from Ru Paul's Drag Race may not have the desired effect.

Be prepared
Like all good boy scouts, do your research and make a list of everything you want to know. If necessary, jot down things during the consultation too -- you'd be amazed at how much you forget especially if the news is not good. Also ask questions if there's anything you don't understand -- the next appointment may be some time away.

Look at your doctor in a different light
He or she may not have all the answers and you're entitled to be allergic to BS but doctors are human beings, with families and lives outside the consulting room. They may be having an off-day, or not feeling too great themselves, or just be in a foul mood. We're entitled to professionalism but we're dealing with human beings not robots (yet) so try to adapt your approach to what you read in their body language or attitude. You want the best possible outcome and so do they but if you're the twentieth patient, after a long and complicated day, try to be aware that they are only human too. That's why I always try for first appointments. Providing they've had their coffee and aren't Nurse Jackie, Oxycodone dependents; they should be at their best early in the morning.

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.

"In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science."

-- Martin H. Fischer (1879-1962), German-American physician

More information about the doctor/patient relationship can be found in the following links.

The Doctor-Patient Relationship: Challenges, Opportunities, and Strategies

Physician-Patient Relationship

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