Dealing with Doctors When You Have a Chronic Illness
When you have a chronic illness, or deal with chronic pain, you learn pretty quickly that you are your best and only advocate. Doctors can often be rude, dismissive, and distrustful. They may make you feel like you’re unimportant, or imply your symptoms aren’t as bad as they really are. They may even accuse you of lying.
It took two years, and six doctors, to finally have my endometriosis taken seriously. It was frustrating, and I often felt like maybe I was going crazy. Like maybe the pain really was all in my head.
Here are a few things I’ve found helpful, and some advice from a friend of mine who is a doctor. Please feel free to add to them in reblogs or messages, I’d like this to be comprehensive.
Some helpful phrases:
I’m not happy with my current method of treatment because…
I no longer feel my symptoms are manageable.
I want to trust your expertise, but I don’t feel that I’m being taken seriously.
I’m confused, can you repeat that?
I don’t understand, can you simplify that?
That will help with the pain. Is there anything that can help with…?
When going to see a doctor about a diagnosis
Make a list of your symptoms, medications (including supplements), medical history, and family medical history before going in.
Be firm and clear about how your symptoms have affected your life, and what you would like from any possible treatment (for example, is it more important to you that you are able to work full time, or that you are completely free of pain?)
Tell your doctor all your symptoms, but make sure they know which ones are the most severe, and which ones affect your life the most.
If you have a uterus, tell your doctor if you plan to have children someday.
If you don’t plan to have children, ask your doctor if the treatment would be different for someone without a uterus, or who they considered old enough to decide not to have children. Ask why they have chosen the current method of treatment instead.
Ask your doctor to repeat any instructions they have for you, and write them down. Speak up if you’re confused, and follow the instructions carefully.
Exaggerate any of your symptoms in order to be taken more seriously.
Downplay any of your symptoms because you don’t want to seem annoying or attention-seeking.
Leave anything out because it’s embarrassing or difficult to talk about. I can guarantee your doctor has heard and seen worse.
Lie to your doctor about your diet, exercise, or drug and alcohol use. They won’t judge you, or report you to the police, and it could be relevant.
Leave the appointment without a solution, prescription, or avenue of further research (eg blood tests, or a referral to a specialist).
Get angry or feel ripped off if the doctor has to google a few things. GPs are general practitioners, and it would be impossible for them to know everything about every pill and illness on earth. They’ll still get more out of a google search than you will, because they have a much better understanding of medicine and the human body.
Edit: Just to clarify, because I made someone really angry because I think I wasn’t clear on this point. If you go to a specialist, and they type all your symptoms into google and base your diagnosis off of that, of course you have every right to be angry. I’m talking about a GP checking side effects or contraindications before prescribing you something, or quickly checking to see if there’s any new information about your condition since the last time they learned about it. It would be impossible for them to know everything about every illness and medication ever, and I would personally rather they checked before prescribing me something. Doctors have access to medical journals and information that we don’t have access to, and in general they know a lot more about bodies than the average person.
Of course, your doctor should listen to you, and talk to you about your symptoms. That’s kind of the whole point of this entire post. I just don’t think you should automatically dismiss a doctor as an incompetent idiot just because they might want to double check something before tell you.
How to talk about fatigue with your doctor
Fatigue or exhaustion can be hard to describe, and just saying you’re tired all the time can be misleading.
Write down the times of day you feel most tired for at least a few weeks before going in. Also write down what you eat, and any exercise you do. This may be helpful to the doctor, and even if it isn’t, you may be able to find some patterns that help you manage your fatigue on your own.
The doctor may ask you to rate the feeling of fatigue on a scale of 1 - 10. This can be helpful, but is also subjective. Make sure you also communicate how the fatigue has affected your life. Is it preventing you from going to work? Have you had to give up the things you love because you feel too tired to do them? Has it affected your relationships?
How to talk about pain with your doctor
Describe the physical sensation. Just saying it hurts doesn’t help the doctor figure out what’s going on, so you need to be specific.
You can use words like constant, intermittent, throbbing, acute, aching, dull, sharp, burning, stabbing, stiff or tight.
You can describe your pain by comparing it to other things. For example, my pain feels like needles, being squeezed too hard, a broken bone, a toothache, a cut from a knife, an electric shock, waves that come and go, a bad sunburn, banging my elbow etc
Describe where the pain is taking place. Be specific, but try not to guess at a particular organ or muscle, even if you’re very familiar with the human body.
If it’s helpful, you can print out this chart, and colour in the areas that hurt.
Make sure you specify whether the pain is deep inside your body, or superficial (on or just under the skin).
Tell your doctor what effect the pain is having on your life. This is extremely important. They may ask you to rate your pain on a scale of 1 - 10, which can be helpful, but pain is subjective. One person’s 8 might be another person’s 4.
It is much more informative in the case of chronic pain to tell your doctor things like: My pain stops me from going to work on a regular basis; my pain prevents me from doing the things that I love, my pain makes me irritable, depressed, anxious, or short tempered; my pain is unbearable; I am no longer able to work full time as a result of my pain; my pain stops me from having sex; my pain has affected my relationships; I no longer feel I can manage my pain.
You may think your doctor is only interested in physical symptoms, but in reality telling them the ways your illness has affected your life gives them a much clearer idea of the severity of the symptoms, and of what treatments are necessary.
Years before the White House was lit in rainbow colors celebrating the Supreme Court’s decision legalizing same-sex marriage, President Obama used a routine bureaucratic tool that ended up significantly changing the government’s understanding of gender and how it can be changed.
The process began during Obama’s first year in office when he issued a memo in June 2009 instructing agencies to extend to same-sex couples some benefits that the spouses of federal employees receive. Over time, that directive led to a decision by the Social Security Administration to greatly lower the threshold requirements for changing one’s sex on official government documents, a change that would determine how a person’s gender is recorded on passports, tax returns, marriage licenses and other documents.
Since June 2013, someone wishing to change their sex classification on their Social Security card has needed to provide only a doctor’s note guaranteeing that “appropriate clinical treatment” is underway.
Before then, a person seeking to change their sex on the document had to undergo gender reassignment surgery, an expensive and, many LGBT advocates and doctors say, unnecessary procedure for a transition to take place.
When I have an appointment with a new medical professional, I dread the part of the visit when I will have to talk about my chronic fatigue syndrome. Even if the first part of the visit is filled with compassion and signs that my narrative is being followed, understood, and believed, the part where I mention my chronic fatigue and its severity nearly always transforms the conversation into something unpleasant. Most commonly, what I say about my most debilitating symptom gets ignored, and the healthcare worker quickly changes the subject. Other times, the person will dismiss what I’ve said, by telling me that it can’t possibly be as bad as I say, by telling me that “everyone gets tired sometimes,” or by telling me that my fatigue is likely psychosomatic- just a symptom of depression.
It is tempting, in the face of this kind of dismissal, to start doubting myself, and to start doubting that what I think my body is experiencing is real. This kind of doubt is incredibly destructive. If I stop listening to the signals my body is sending me, or start thinking that I can’t be trusted to interpret these signals, I do more activities than my body is up to, and do less medicating and frequent resting than my body needs. My body, like that of many others with chronic fatigue, cannot withstand this kind of treatment for long, though, and soon then the fatigue signals become too strong to be ignored. Dizziness, shakiness, flu-like body aches, racing pulse, nausea, and blinding migraine pain eventually descend. This kind of overdoing it then puts me out of commission, and I’m bed-bound for periods which last at a minimum 20 minutes, and have so far gone on for as long as 6 months.
Thank goodness for the internet. Now I know just how common, debilitating, and misunderstood chronic fatigue is. Now I know I am far from alone in having healthcare workers who don’t understand or believe what I’m up against. Now I know that it is important to work with my healthcare team to get them to start taking my fatigue seriously. Excitingly, now I know some tricks which have helped me convince my healthcare team that my fatigue is as I describe it. I have had the immense satisfaction of watching it really sink in for a healthcare worker that I am up against immense, real and debilitating fatigue, and that my complaints need to be taken seriously. I am writing to share some of my tricks, in hopes that other patients can use them to help educate their own healthcare teams.
Before I share my methods, I wanted to share a little bit of history which has given me validation about my experience with healthcare workers and their mishandling of my chronic illness. This history has inspired me to hope that it won’t be long before the eradication of the medical community’s ignorance surrounding chronic fatigue syndrome. I hope this is inspiring for you, too:
At the beginning of the 20th century asthma was seen as a psychosomatic disease – an approach that probably undermined any medical breakthroughs at the time. During the 1930s to 1950s, asthma was known as one of the holy seven psychosomatic illnesses.
Asthma was described as psychological, with treatment often involving, as its primary component, psychoanalysis and other ‘talking cures’. A child’s wheeze was seen as a suppressed cry for his or her mother. Psychoanalysts thought that patients with asthma should be treated for depression. This psychiatric theory was eventually refuted and asthma became known as a physical condition.
Asthma, as an inflammatory disease, was not really recognized until the 1960s when anti-inflammatory medications started being used.
Strategies: Some of these won’t be for you, but I hope at least strategy one can help you!
Assertiveness -Define boundaries for yourself, and keep updating them. Since these days I usually have just enough energy for two medical appointments in a day, or enough energy for an appointment plus a dinner with friends, I make my plans accordingly. When a curveball is introduced into my day’s plans, though, it throws everything off. Last week, there were two days when I had two appointments. Each of those days, I was made to wait in a waiting room for 75 minutes past my scheduled appointment time. This has happened before, and will happen again, because some medical practices never run smoothly, and because even well-run practices encounter emergencies which put them behind schedule. Since that kind of wait time uses up my precious “up time,” it usually means I have to cancel the rest of my plans for the day. I have recently given myself permission to leave after 60 minutes of waiting, even if I’m not in active distress. Enforcing this boundary (usually I leave after 75 minutes) has been a huge breath of fresh air for me; with few exceptions, I have stopped having my entire day ruined by this kind of unexpected wait. When I’ve enforced this boundary, my trip home has been safer, my other plans haven’t needed to get canceled, and my medical teams have had the chance to see the kinds of compromises I have to make every day thanks to my fatigue.
-Enforce your boundaries when you can, and, when you can muster it, communicate while you’re doing this. I’ve recently had good luck writing brief notes each time I’ve had to excuse myself because I have been made to wait for more than an hour. Each time I left an appointment last week, I gave the receptionist a note INSERTlike this one, and headed out. Both times, I then received an earnest voicemail from the doctor himself, with apologies and promises to not let that kind of wait happen again. When I went back for a rescheduled appointment today, the receptionist apologized and asked me to let her know if I am ever close to having to leave again. This has been an incredibly satisfying and relieving experience. Things won’t always go this well when I assert myself, I know, but I know it’s never my fault if my stated boundaries aren’t respected, and it feels good to be standing up for myself and my needs.
-When you’re feeling particularly misunderstood, write a polite but strong letter. I wrote a blog post about doing this, and my post includes the letter I wrote which inspired an entire medical practice to start taking my fatigue seriously. Another blogger has posted a letter like this, and hers includes some great citations to current medical literature to back up the fatigue-related claims her doctor was dismissing.
-Talk openly and frequently about your fatigue. Sometimes before a medical worker will understand your fatigue and the impact it has on you, you have to spend multiple visits repeating yourself and finding different ways to convey the same info. I have had the satisfaction of learning that with a good and well-intentioned listener, this kind of repetition can sometimes help things click for them. This happened for me with my primary care doctor. When she finally realized how much she’d been dismissing my fatigue as a secondary complaint, my doctor apologized profusely, and promised to try to be a better listener for me and for her other patients.
-Try to be polite or matter-of-fact when things aren’t going well. Try to control the desire to throttle someone or even to chew someone out, even while you’re being firm about what you will and won’t put up with. Read this article about asserting yourself, and know that it gets easier with practice, especially if you have successes along the way.
Allies -Bring someone with you, especially to difficult appointments. Bringing in a reliable witness or patient advocate can help you to be believed, to get your story across even if you yourself are too fatigued or otherwise having trouble telling it, and it can just be nice to boost your morale. I previously wrote a post about how effective it can be to bring my partner with me when he’s able to accompany me.
-If you have a medical professional who gets it, see if they’ll help talk to the professional who doesn’t. It can be amazing how far the word of a doctor who knows and trusts you will get you.
-Make friends with support staff. On good days, if you have them, try to learn the names of your team members. Be friendly, and always try to show gratitude for the work they do. This can make your visits much more pleasant, but also can build strong alliances you can use to get the care and understanding you deserve. When you nicely explain your limitations to support staff friends, they will often try to see if they or your doctor can accommodate you better.
Preparing for Appointments -Build up an understanding that you are a reliable and organized patient. If you can bring in official records about your conditions (or diaries for self-reported conditions), you can help demonstrate that your accounts are reliable.
-Bring in brief handouts. Some clinicians can be impressed by and learn from information you bring in, as long as you can demonstrate that it comes from a reliable source. Consider whether having studies to cite or bringing printouts of relevant information might help get you and your healthcare workers on same page.
-Bring in a list of the concerns you hope to discuss at your appointment. I wrote a post about how to do this and why. If you show you are prepared and know what you want out of the appointment, you will be more likely to have a chance to talk about what is important to you, including your fatigue.
Between-Visit Soul Searching and Self Care -Try to muster patience for as long as it helps you obtain the support you require. Being a patient sometimes means accepting the good parts of our care along with the less good. Sometimes, this means working with people you don’t particularly like, or who sometimes treat you disrespectfully. If you have patience, this can give your healthcare team the chance to learn to trust you, and to learn how to improve your care. That said, do listen to yourself. It is healthy to recognize your limits and to remove yourself from situations that feel on the whole disrespectful or unhealthy.
-Find support. If you are having trouble being heard by your healthcare team, it can help to find supportive friends/family/therapists/health professionals/online communities to vent to. This can help you feel heard and understood, even when it can’t be by parts of your healthcare team.
-If you have options, keep yourself open to the idea of changing where you seek healthcare. Not all healthcare providers have the capacity to grasp what you’re up against, or to help you. At some points, your best strategy will be to start working with someone new.
“How could I choose between the two? I would always look at the twin which survived and think ‘I killed someone to save you.’”
At 10 weeks gestation, doctors told Carmelle Hartgrove that her unborn #twins were monoamniotic and monochorionic, and that they were unlikely to both survive. They recommended she #abort both twins, or abort one to give the other a better chance of survival.
Carmelle and her husband refused to accept either option, choosing to continue the #pregnancy with BOTH twins. Despite the pregnancy risks, both twins were born via c-section and are perfectly #healthy today!
We’re so proud of Carmelle and her husband for standing up for their twins! It’s frightening how frequently and inaccurately #doctors advocate for #abortion—this trend needs stop.
During the recent upsurge of measles cases, he’s been a frequent presence. But this week, he’s suddenly gone silent. E-mails and phone calls went unanswered. And Wednesday, when a CNN news team showed up at his practice, someone called the police. Confronted in the parking lot, Wolfson turned his back to the camera. The silence
Why the about-face?
It may have something to do with the investigation that the Arizona Medical Board has opened against him. Parents following advice like those Wolfson gives are at the core of the U.S. outbreak, which is infecting mostly unvaccinated children. And some doctors have advocated that medical licenses be revoked for recommendations like his.The board says it’s received two complaints and is investigating. But it wouldn’t disclose the nature of the complaints. “Can we talk about the investigation?” CNN’s Kyung Lah asked Wolfson Wednesday. “I have no comment,” he responded. “Are you changing your opinion about vaccinations?” she asked. He was silent.
‘The natural cardiologist’ Wolfson trained at Chicago College of Osteopathic Medicine, then did residencies in internal medicine and cardiology. He sells himself as a traditional cardiologist who turned away from his practicein disappointment. “For years I practiced like any other cardiologist using pharmaceuticals and dangerous procedures. I became disenchanted with conventional medicine,” he said in a promotional video. Instead of antibiotics, he’s likely to prescribe sleep, good family relationships and an organic diet.His anti-vaccine stance stems from his views on putting chemicals in our bodies. “What I am opposed to is that we are injecting chemicals into our children,” Wolfson said, when he recently appeared on CNN’s Erin Burnett OutFront. “This is aluminum, mercury, sometimes aborted fetal proteins. There’s antibiotics in there.” Some of that’s correct, the CDC has said in its list of vaccine ingredients. But it’s not worth worrying about. For example: A common aluminum compound found in many vaccines – aluminum hydroxide – is also the active ingredient in antacid tablets. And some of it’s wrong: Trace amounts of a mercury compound used in adult vaccines, is now absent from almost all pediatric formulas, the CDC has said. And vaccines have proven very safe for decades. They save lives and preserve health, the CDC said. Before a vaccine was introduced to prevent measles, the United States had up to four million cased per year, the CDC says. Thousands were left with serious impairment like deafness or permanent brain damage. Up to 500 people died back then each year.
I’m glad that he’s actually getting investigated by the medical board. His comments have the potential to actually do a lot of harm to vaccination efforts and he has no professional basis for making his claims.
Who is Rep. Tom Price, Trump's choice for HHS secretary?
President-elect Donald Trump has selected Georgia Rep. Tom Price ®, a six-term Congressman who sharply criticized the Affordable Care Act (ACA) and vehemently supported Mr. Trump’s campaign for the presidency, to head the department of Health and Human Services.
As third-generation doctor who previously ran an Atlanta-based orthopedic clinic, Dr. Price has also served as a Georgia state senator, advocating for doctors and espousing views and policy proposals similar to the positions of the American Medical Association and Medical Association of Georgia. He launched his career in politics after he grew frustrated by lawmakers without medical experience making decisions that affected his field.
Price will serve as the nation’s top health official as head of the HHS, giving him an integral role in Trump’s efforts to repeal and replace the ACA. While other elected Republicans raised concerns about Trump’s ability to lead the country and his temperament, Price repeatedly endorsed the then-Republican nominee.
“When I talk to people who work closely with Trump, what they tell me is that behind closed doors he’s one of the best listeners they’ve ever worked for or with in their life,” Price said in an interview in the spring, according to The Washington Post. “Which is kind of counterintuitive given what some of his public persona is.”
While Trump has offered few specifics of what his own health care plan would entail, GOP House members have aggressively drafted opposing legislation to the 2010 law that expanded Medicaid benefits to millions and provided insurance options and legal protections for others. Legislation sponsored by Price, called the Empowering Patients First Act, would repeal the ACA and instead give tax credits to those purchasing individual and family health insurance plans. His proposal would also make substantial changes to Medicare and Medicaid, repackaging Medicaid as block grants sent to states, allowing them to determine who is eligible and what services would be covered.
The Empowering Patients First Act also contains a provision that requires “able-bodied” recipients to work for their healthcare, an idea that the Obama administration strongly opposed, and allows insurers licensed in one state to sell policies to those living in others.
“Premiums have gone up, not down,” Price said in a recent critique of the current system, according to The New York Times. “Many Americans lost the health coverage they were told time and time again by the president that they could keep. Choices are fewer.”
Trump himself has said he’d like to replace the ACA with a plan that gives more power to the states to determine how they handle Medicare, and to allow insurance companies to operate across state lines.
While the president-elect has softened some of his positions against the ACA, stating days after the election that the may keep provisions that bar insurance companies from rejecting applicants who have pre-existing conditions and allow people under 26 to remain on their parents’ healthcare plans, Price’s proposal could have plenty of common ground with Trump’s ideals.
Price’s appointment will require a Senate confirmation, and any attempt to repeal and replace the ACA will require agreement from Congress.
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