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.
Monstercat Says: It’s okay to look for a new doctor!
If your doctor isnt treating you with respect, treating your issues, giving you the help you need, or even if your doctor just isn’t being proactive with dealing with your health issues, its OKAY to look for a new one. There’s a lot of stigma around “Doctor Shopping”, or patients who switch doctors looking for pain meds - but don’t let it get to you. If you need pain medication to survive, then it’s okay to find a doctor who will understand that, and give you the help you need and deserve.
Because that’s the key. You deserve to be treated with respect. You deserve to have a doctor who helps and advocates for you. You deserve a doctor who will give you the treatment - including medication - that you need to help you.
I’m so tired of explaining to people that I don’t want to be a doctor. I don’t want to diagnose. I don’t want to prescribe. I don’t want to manage care. I don’t want to go to med school. I’m not “trying to play doctor” when I advocate for my patients. I want to provide hands on care at the bedside to my babies. I want to be a nurse. I shouldn’t have to preface that desire with “but I love doctors!” or “I actually had better test scores than my med school siblings, I just didn’t want to go that path!”
Nursing deserves respect on its own, without any comparison to what doctors do. We’re not in competition and I have nothing to prove.
“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.
Doctor Who gives a pro-choice message, but people are upset.
So, tonight’s Doctor Who episode was essentially an allegory for female reproductive rights where the Doctor is advocating for the power of choice, but I’m seeing A LOT of people getting the message completely wrong and getting upset about it.
The Doctor takes himself out of the equation and gives the women in the episode the authority the deal with the situation. He recognizes that this isn’t his choice to make and removes himself from it and puts the power in the hands of the women. The result of the final choice in the episode is irrelevant. Pro-choice does not mean an abortion happens every single time. It means the person carrying the child gets to choose what is best course of action for them. And that’s exactly what happened. The Doctor recognized that the women were in the best position to make the choice that would result in the best course of action. The best course of action is different for every person, but everyone demonstrated that they had a choice and had the right to exercise that choice, which is exactly what the point of the episode was.
“From time to time, the story of the donor is as interesting and important as the story of the work. Bert Schaffner, a passionate collector of Indian art in particular, sat on the Acquisitions Committee as a non-Trustee. Bert collected this work in his youth and gave it to the Museum in celebration of his own ninetieth birthday. He was also a very prominent psychiatrist, one of the earliest doctors committed to treating patients with AIDS, and a gay-rights advocate starting as long ago as the 1950s.”
so my dad has been in extreme pain for a very long time now. last year they determined he had a hernia after visiting the hospital non-stop for three months. they operated on it things were good for a little bit but still not that great and then all the pain came back like a thousand times worse. we’ve been going back and forth to the emergency room and trying to get in contact with his doctor and veterans advocate for a while now because he’s been in crippling pain and literally no one is doing anything.
whenever he goes in they’re just like “you’re in pain? idk what to tell you guy dude man but hey here’s some pain pills” and he’s like “no i don’t want pain pills i want to know why i’m in pain”
sometimes when we go in they like do a bunch of tests and checked his arms for track marks to see if he’s on drugs or addicted to pain pills and if he’s just showing up to get the pain pills but he HATES pain medications and every time they prescribe them to him he’s like “no seriously these don’t help they just make me stupid and i’m still in pain” and he doesn’t take them
but they don’t test anything else, just to see if he’s a drug addict.
oh and one of the things that is accompanying his pain is this very large lump in his side like???? seriously???
SO ANYWAY last week we were at the hospital four days in a row and on the fourth day they decided to humor him and run a bunch of random tests and said “yeah we’ll get back to you with the results or whatever” so today we had an actual appointment and we went in to see his doctor and his doctor left the room and a psychiatrist came in and pretty my just nicely says “there’s no reason for you to be here, the pain is all in your head. here’s some medication that could help with that whole crazy head thing you got”
JUST FUCKING THEN HIS DOCTOR COMES IN AND IS LIKE “oh so apparently you have three hernias and some really bad internal scaring which is doing all kinds of wonky stuff to your system so we’re going to operate”
IT TOOK THEM SIX MONTHS. SIX FUCKING MONTHS OF JUST DOING NOTING BUT CALLING MY DAD A PILL JUNKIE AND EVEN TELLING HIM THE PAIN IS ALL IN HIS HEAD UNTIL THEY FINALLY REALIZED “OOPS, MAYBE THERE IS ACTUALLY SOMETHING WRONG HERE…..”
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.