Updated: Feb 2, 2019
This month's message isn't really for us. It's not for the chronically ill, the pained, the disabled. This month's message involves something all of us are far too familiar with- something we've all dealt with, whether we were born with chronic conditions- or acquired them later in life.
Now, I want to preface this with the acknowledgement that I've been incredibly fortunate compared to many of my chronically conditioned peers. I went through about 2 years of frustration trying to get the help I knew i needed. I had a bad neurologist, a bad pain guy, and a bad pcp. I gave up trying to get help for about a year. And then I started seeing an amazing primary care physician who changed everything for me.
But my good fortune is the exception, rather than the rule. This last few weeks i've had an ongoing conversation with a friend in Canada. After ages of struggle and pain and frustration- she saw yet another doctor to try and sort out symptoms that have been plaguing her in addition to the diagnoses she already has. In preparation for this appointment, she spent weeks doing deep-dive research. Found peer-reviewed medical studies. She educated herself as thoroughly as possible and compiled literature and data to take with her to the new physician.
And this kind of behavior is not unheard of in our community. The truth is, most of us have had to do this kind of work on our own behalf. You know who reads almost as many medical journals and magazines as specialists? The chronically ill. The undiagnosed. The dismissed and unrespected who have to fight for years to get help.
So this month's message is not to you, our heroes, our in-community research specialists.
This month's message is to the Doctors. Because what happened to my friend is what happens to so many of us, so many times as we try to get help- she was dismissed. Her research was ignored, her theories negated without consideration. All that work- for nothing. Less than nothing. She didn't even look at what she'd gathered. The entire tone of the appointment was dismissive and belittling. And we've all dealt with this at one time or another. Some of us from multiple doctors for years.
So here's the thing we need you to understand, physicians: your chronically ill patients are different. We don't get google md's, and we don't panic over web-md rabbit holes. We deep dive. We research. We read a lot of the sources that you do (or that you should be reading). We communicate- A LOT, with others who have our conditions, and our symptoms and our prognoses. We learn everything we can. And no one hates google-experts more than we do. Believe it. We deal with them daily- from friends and family even strangers- who think their 5 minute google search means they know more than we do about the issues we live with every. single. day.
That's the issue you seem to miss out on as well. We're not being disrespectful of your medical training, of your expertise, of your education. What we ask is that you give us the same respect when it comes to our actual lived experience. When we leave your office, you can move on to the next file, the next case, the next puzzle. We go home with the same struggle and pain and limitations that we came to you with. We go home with the added frustration of being ignored, dismissed or placated.
My friend's doctor completely ignored her research that pointed to possibilities like Chiari, and other conditions that can be comorbid with EDS and some of her other Dxs. Instead, she's being tested for celiac, was repeatedly asked if she was sure she didn't have migraines, and was told that despite results from an MRI, the doctor didn't always agree with the results from an MRI.
Now, upon returning home and doing yet MORE research, testing for celiac is not out of line with the symptoms she went in with. But the doctor didn't bother to SAY any of that. She didn't discuss with my friend WHY that was the direction she was heading, or HOW any of it might work together with her existing Dxs to create the newer symptoms she's experiencing. This was clearly a doctor who Knew Best and felt no need to explain any of it to the patient before her. A patient who clearly would understand and WANT to know. Add to that the additional frustration of, "we'll let you know if something comes up on the tests we're doing."
So, as one chronically ill/disabled patient in a community of chronically ill/disabled patients- let me lay out 5 important notes for Doctors and Clinicians who deal with people like my friend and me.
1. If I bring you research- at least LOOK at it. I'm not a google md. If I bring in actual research, it means I spent hours, if not days or weeks trying to find answers- and from much more than just webmd nonsense.
2. I'm ok with more tests. Especially if they have the potential to actually give us answers. But TELL ME THE RESULTS. Seriously, even if the result is: it wasn't this. Do you have any idea the anxiety involved in having tests run and then just... never really knowing if they've even come back? I don't just want to know if the results give you an aha! I need to know the results CAME BACK. So I know when to stop worrying, or hoping, or freaking out. Have a nurse call if you're too busy. Leave a voicemail. SOMETHING. "Tests came back, it wasn't any of the things we looked at, we'll discuss at your next appointment." It's THAT simple.
3. I respect your training, education, and experience. Respect my actual, daily lived experience. You may be the expert in your field or speciality. But I am the expert in my body. If I come to you and say something is wrong, or off or new- don't dismiss me. Don't ignore my instinct. It's ok to not know everything- even if you're the expert. But just because you don't know immediately- doesn't mean it's not happening.
4. Explain your train of thought. After doing her own research, my friend realized testing for celiac was pretty spot on. But she shouldn't have had to do that work. Because in the course of her appointment it would have taken approximately 90 seconds for a good doctor to explain what led her to that line of thinking. As chronically ill individuals, we are already doing extra work every minute of every day just to survive. Don't make us do extra work, just to avoid a 90 second interaction. If I know WHY you're requesting a certain test, or starting a certain medication- I'm a lot more likely to be cooperative, compliant and supportive.
5. Be honest. If you don't know something, TELL ME. No one knows everything, not even experts, not even specialists, not you. I already know there are holes in people's knowledge. Let me know you understand your own limitations when it comes to my condition/symptoms/complications. It tells me you care enough to know and to LEARN. The best thing a doctor has ever said to me was, you know what- I don't know... but I'll find out.
Mostly, we just need the medical professionals we encounter to realize that we are different from your standard patient seeking acute care and solutions. As a rule we're more knowledgeable, more dedicated, and yes- more desperate. Set aside your ego and HELP US.
And that begins by believing us, respecting us, and acknowledging that while you may be the medical expert- the best expert in our daily lived experiences: is US.
FEBRUARY'S FEATURED SHOPS
CAMPAIGN(S) OF THE MONTH:
Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.
Syndney's Medical Bills
Hello, I'm Sydney and I'm drowning in my medical bills. I have a rare genetic connective tissue disease called Classical Ehlers Danlos Syndrome. This requires extensive care. I have multiple hospitalizations especially within the last few months. I have weekly infusions through my port-a-cath to keep me hydrated because my gastrointestinal tract is failing. I also am on 24/7 tube feeds through my intestinal tract. I can't eat. Things are progressing rather quickly. I'm fighting my very best but there's not much we can do if I cannot afford the care I need. We're trying our best to keep moving forward with my care, but at the moment we can't go forward. I can't afford to further in my treatment. I get paid 380 dollars a month and just one of my bills want over 1,000 dollars a month and I cannot afford this. It's impossible. I need the money quite quickly as they want the money very soon. All of the proceeds will be going straight to my medical bills. Thank you so much.
Temporary Help Needed!
Hello all! I am a chronically ill middle eastern lesbian living in the midwest. On X-Mas Eve, I got sick. I was intensely nauseous, and nothing seemed to help. I continued to remain nauseous until now. I am currently actively nauseous with a ton of other fun GI symptoms. The nausea is keeping me up at night, and I can’t sleep.
On top of that, I live in a state that requires specific kinds of inspections to license your car. Well, my car failed. The car required a RF control arm, metallurgy for an exhaust leak, new wipers, and two new tires. It cost upwards of $800. I did all the repairs. The car still is not tagged properly because I couldn’t afford the repairs and the tags.
I have also been going to doctor after doctor. I have had four specialist visits and one ER visit. With my insurance, the copay for a specialist is $70. Those visits alone were $280. The ER visit was $500 (and I am still paying for that).
My account is currently in the negative because what the fuck else was I going to do. This is the state of healthcare in America.
Listen, normally I do okay. But with the car repairs, I just could not manage this month. Literally all of my money went into my health or my car. If you could help at all I would be so grateful. I have limited skills other than social work, but I can edit papers/stories/essays/poems. Really any help would be incredible.
You can donate here: paypal.me/acaseofyou12581. Thank you so much for your help. If you could reblog this, I would appreciate it.
If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!