Don’t Be One of Those – additional thoughts

Don’t Be One of Those – additional thoughts

Recently I wrote a post, Don’t Be Another One of Those, which received so much passionate commentary. I considered replying to the comments as a whole, but what ended up happening was that the flurrying of thoughts inspired another post. I can only hope that it brings some clarification where some may be lacking; that it paints a better picture of the circumstances that caused me to write such a passionate piece, to begin with, and that you understand both mother and child, battling chronic illness against a world not willing to accept it.

As a writer, I live by a certain mantra. My words are my paintbrush and if people are not understanding in the way I intended, it’s never their fault. The fault always lies with me, because I am the painter and I take responsibility. This doesn’t mean, however, that I did or said anything wrong. I stand by my words, but I still seek to touch up here and there, where I can, in hopes of better discourse. I do not ever expect everyone to go along with me. As a writer and someone who has been doing this for some time now, and who is comfortable in her skin and with her voice, I love when people disagree. I love positive discourse and exchange in views and ideas that at the end leaves both sides feeling they gained something from it and with that in mind, that is where I am going with this post.

Liza Zoelick

It is said that setting a scene is the most important job of a writer to convey the intentions and feelings of all the actors. Well, those in my story are not actors but it may have been that I did not convey the feeling and intentions well enough. When my daughter became sick and went to see the doctor at my behest, he did not ask her about other illnesses in a way that conveyed concern. He did not ask her who gave her the diagnosis in a manner that communicated any curiosity of any other doctor in the community, searching out those who treat others with the same thing. This doctor’s behaviour was disbelieving and condescending; first, because my daughter is young and second because she has multiple issues going on that he felt she was too young to have to go on. But the primary issue here was not autoimmune issues, it was her being sick with the flu, and it was his choice to begin a line of questioning, that while relevant, could have been done with more tact and understanding.

We are lucky enough to live in a metropolitan area, where there is no lack of doctors who treat either fibromyalgia or rheumatoid arthritis. The idea that this doctor was simply trying to assess who other doctors in the area, “Might have been a believer in fibromyalgia & might have wanted to know who else in the community was as well,” it is just my opinion, but I don’t think so. As I said, we are a very metropolitan area and given he is a physician in an emergency clinic, I don’t think it’s that difficult of an undertaking to go out and figure out what other colleagues you may have nearby, that treat and support fibromyalgia and rheumatoid arthritis. Hell, there’s this novel thing called asking. We’d love to tell you. It’s not like chronic patients are hoarding the information of amazing doctors who believe us and treat us. We’d love to shout it from the rooftops.

I didn’t go with my daughter to her doctor appointment, nor do I usually. Sadly, I don’t have to. We see many of the same ones. However, I do encourage having someone there with you to advocate for you. Would I have doubled down on the good doctor the I did in my post or the comfort and privacy of my home? It depends. I’m not an inherently mean or snarky person, however, these last six-plus years, that I’ve been dealing with my health and evolution of chronic illness, I’ve dealt with a lot of half-wits who call themselves doctors, who’ve insulted me, made me cry and made me wish I didn’t exist. So that the culmination of feeling can sometimes rear its ugly head at unexpecting times. I may have fumed under my breath, muttered and in perfect, Southern charm told him “Bless your heart,” and just walked away, taking my daughter with me. Or, I may have released the angry, chronically sick Mama Bear, and eviscerated him. No telling. But this I know, either way, he would deserve it.

This is something I thought about quite a long time: being judgmental. Was I being judgmental? Again, as a writer, I try not to be. Even writing an opinion piece, which this is, I try to be fair. But we’re all judgmental, as humans I don’t think we can help ourselves. All we can do is recognise that we are and do our best to change how we see things. So, yes, I may be judgmental, but I have a reason to be. And yet, had I been there, I would have given him the benefit of the doubt and treated him respectfully unless he pursued things. Remember, my daughter wasn’t there for her autoimmune issues, she was there for the flu. He made those issues a big deal by asking her who diagnosed them in a manner that reflected scepticism at both diagnosis and her age. Yes, doc, young people get sick too and that’s where I feel the twitchiness of being judgmental.

The last part before closing out is this. I’m not your effin inspiration porn. Not every narrative has something positive to say about a situation, though I would say 85% of my posts tend to be positive. But I tend to try to view things in a positive light. That’s just me. Not everyone does; some are more realistic and that is okay. What is important is being authentic and bringing a story to people that are meaningful and that as a writer, you think others will relate to. I brought this to you because it made me angry. I brought this to you because as a mother I didn’t want a doctor treating my daughter this way. I brought it to you so you’re aware this happens, not to spin it positively. There’s plenty of places to get inspiration and positive narrative. But from me, you’re just going to get the truth according to Liza.

In closing, I appreciate your comments all the time. Your readership is what inspires me to write. Listening to your stories reminds me of my purpose. It reminds me of why I do what I do, even when it gets tough. It’s when I read those particularly difficult stories that bring me to tears that I dig in deeper. I don’t expect readers to agree with everything I write and I’m prepared to debate with anyone, but much of what we are debating about here are experiences and we’re all going to have different experiences. In the end, we’re all going to have a different experience that will be relatable to some and not others. But it doesn’t make it wrong.

Namaste.

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Ann Sable

CICI Hannah…I appreciate your words and concerns. As of now and even before this, I couldn’t care less what others think. People need to keep their eyes on their own papers -so to speak. Too many are hyped up on trying to catch a fault in others. More or less, as to, hoping to win a medal for degrading others?
This was suppose to be a free speech and opinions accepted area, along with helping others and ideas. Boy oh boy, I was wrong!
And yes, it took way too long to get to the point and so much was added that didn’t really belong…but to each, their own.
As for the mouth that has taken the text from the movie ‘Bambi’, I give no credit to her whatsoever. This is not mean at all. If you do not like what you read or whatnot, move along. Comments, ideas, feelings amd so much more are suppose to be welcomed and open. This isn’t a socialist party, or is it? Who knows and at this point, who cares? Not I by any means.
People will always try to make a mountain out of a mole hill. Just as, many will always look to be offended like there is a reward in it. AND many will keep repeating themselves to the point that you just want to scream, “Get to the point, Edna”! But, that would rude and completely uncalled for.

With all this said, please stop getting butt hurt over everything, especially when you’re not understanding what another has said. Leave that to the much younger generation. This very site has done nothing but waste energy, time and showing any compassion, for which I don’t feel guilty in that area…but the rest of it -I now feel at peace with walking away from the God-awful attitudes. I truly feel for those that hasn’t recognized their tones and thoughtless words. Of only they would have thought things through before spewing. Tsk-Tsk. You know what they say about assumptions? If not, you simply must look that one up.

Let peace, compassion and love live in your hearts, always. Take care and good luck!

CICI Hannah

I also wanted to add one more thing…Ann, don’t ever allow those that cant see past their own noses silence you. You have every right to say whatever the hell you want to say just like everyone else here. Please don’t stop posting your insights because of a few simpletons. They aren’t worth the dodging. Nothing mean nor snarky in your comment. You do you and don’t be silenced, you have a voice too! keep on, keeping on!

CICI Hannah

I guess the dr sticks by her words. No matter. As for the ‘corrector” here with her words about how people should keep their mouths shut and about women sticking together and not attacking each other. Hmmm, didn’t see anything of that sort here. Must have a sore spot you are carrying. Do not speak yourself, if it has nothing to do with what is being said…🙄 It took me numerous times to read this and so much that was thrown in…too hard to follow, jumping all around. Much hope to all of you. Also I read the post before this and only seen one person that was rude as hell. Still see her here too, dr. Ann Sable, I wouldn’t even have explained yourself here. If they didn’t get it the first time around, they definitely wouldn’t get it no matter how layman you got with them. Again, kudos and thanks for staying on track with your words. Best of luck to you all.

Chris D.

Just a quick note for those interested in the Curable app which Cindy mentioned. Their website is curablehealth.com.

Thomas Wayne Kidd

Where do I find a pain advocate? I certainly need one at my appointment in April. If anyone can help please email me at this address (thomaskidd52@gmail.com). Thanks for your article. Keep up the good work. Bless your heart.

Alan Edwards

Your columns do resemble art. I post too late. So you don’t have to post my comment. Pain is a killer. I face it alone. It has gotten much worse recently. The clinic refuses to change meds and tolerance has developed. The pain clinic is obssessed with norco only and are at an impasse: My suggestion of a morphine drip or pump along with medrol and the once safe but now ‘box jellyfish’ deadly tramadol (CDC propaganda) was ignored while my doctors ordered pizza. Our State medical board and local police thugs are deadlier and the pain clinic only do what a few a few academics tell them to. One day pian will be treated my way but none of this will come to pass without a Biblical miracle such as flooding the now murderous 1 to 2 millon strong DEA, sheriffs departments, and DOJ. Then a prayer from say, Eljah. Notwithstanding, leaving the country with my meds and finding a wife and compassionate doctor would allow me to work again- until the few norco ran out. It is almost hell to have intractable pain with 15 incurable diseases every second of each day. And no you can’t work, drive, fly, visit Disney World, or receive actual pain and arthritic treatment from the most powerful global country-besides Russia-. Death is the only way out. Hyperpowerful policing and overreach has pain patients under scrutinty at all times. Police are EXEMPT from murder, lying, beating, bribery, stealing etc. Anything unlawful is lawful for “PEACE”OFFICERS made exempt and lawful by the SUPREME COURT OF THE UNITED STATES

No one can live and work and love in in ceaseless agony. We are being pushed to suicide by our government and academic medicine. Let children educate pompous doctors at each visit. AMEN

Margie

It’s been proven that most doctors are narcissistic. Some are very charismatic but what out for the narcissistic rage. Those are the ones friendly to your face but write ugly note about their patients. Or drop patients for fake reason (rage part).Then some have absolutely no personality at all. Most people that hold positions of power are high mark of narcissistic personality disorder. Your better off twisting information as a question to the doctor. Example slot of classmates had the flu and same symptoms do you think doc this is what she has? Making them feel they already know the answer. Leaving out all the other info like rheumatoid unless asked. Doctors never read medically reports,that’s why they have nurse ask why your here. Doctors are business people first, doctors second. I know/accept your anger. Worse when your child has to endure neglectful remarks/emotional neglect.

MorningStar

I hear ya. It’s bad enough for us to be belittled by disbelief, but our kids? No way, no how. You can tell when the nice words don’t match the eyes, every single time. When the words are condensing my brain goes red and I either cry or cry and talk low. My kids fear the second, anyone who knows me fears the second. I am not rude, don’t cuss, but I teach, bluntly. The madder I am, the better my vocabulary and the smoother my southern bless your heart comes out.

Martha

To Liza & all my fellow Pain Warriors:
Here, of all places – please remember to be kind to each other! If you disagree with someone’s story, say why, but say it kindly…or perhaps don’t say anything at all? We have all been through so much, so many Drs. misdiagnoses, Drs. looking at us like we have 3 heads as we explain all of our symptoms and the infamous “female” bias. Personally, I don’t do much on social media but I do hear stories of the bullying & snarky comments. I am truly offended by how much I hear about women being incredibly judgemental of other women. I just want to tell those people: Please Just Stop. That is a colossal waste of time & intellect. We are all suffering, so at least here – be nice!
Liza – write what you want. I don’t depend on anyone here to be my emotional cheerleader. I expect truth, honesty & kindness, only.
Namaste y’all. 😊

Cindy R

I remember replying to your original post but can’t find it to see what I said (except for the word rheumatologist. If I upset you, I’m truly and sincerely sorry!

Cindy

Please, look into Curable for your daughter. Just look at curable.com
I have Fibro, it’s the only thing that has helped me in 22 years. Just take a look.

Cathy. Isenberd

I only came across you email recently. I have RSD/CRPS. You hardly hear if it. Yet I have had this 34 years. Ever since Florida put restrictions on opioids.i have been in bed with chronic pain. I go to the bathroom and once a month to my doctor, however when I get up and try to walk tears come. I try not to be a burden to my husband and children. I am not living life and I used to be so positive and outgoing. I hate my life as it is now. But praying things will change. Two years in bed is long enough isnt it.
Anyway I just wanted to put RSD/ CRPS out there. I have been told the diffetence between the two are the nerves dont connect to each other that is why Lyrica works for fibro. My nerves are damaged and cant be bridged. I sure wish someone with authority or rich would have this just for an hour and see if things change for us who suffer. I say a hour because I wouldnt wish this on my worst enemy

Some general practitioner docs, here in the UK, began defensively circulating the sadly ‘hilarious to them’ put-down of their chronically ill patients as ‘heartsink patients’….chortle, chortle. My riposte was to call them, surely, ‘heartsink doctors’… I was fortunate to know the late Professor Patrick Wall: co-originator of the ‘gate control theory of pain.’ Which led to the forming of the first pain clinics in the US by Professor Bonica, I believe it was. Prof’ Wall was 1,000% on our side and would mock & chide lazy, under-performing general practitioners who tended to treat us as ‘all in the mind’ nuiscances. I took it upon myself to invite these guys to our self-help groups. Not to chide but to demonstrate that we were now in charge of our recovery, not them. Most were frankly quite thankful and content to begin to learn from us.

Ann Sable

Liza, as a mother of children with chronic illnesses, as am I and my disabilities, I can relate wholeheartedly. As an artist in my years of writing poetry, prose and short stories -words are our paintings and the world, our canvas. Although, this isn’t what it’s about. Posts and comments are our stories…

I speak for myself freely and if my words were taken out of context, it was never my intention. I was throwing in my own experiences with myself, with watching other patients being treated as such, how I’m still being treated and with my children as well. Your words brought out all that I have seen, lived and felt
and still do. Therefore, sarcasm weaved in and out of my comment (not directed at you, but portraying of others that do and say such things, as if, we haven’t any rights to be upset or to react…only to smile and say, “Ok”). Sometimes, it is extremely difficult to be lighthearted. Especially since I did notice what another posted and it threw me back in my seat. It was the very same ordeal that I have encountered too many times to count.

I was young when I had to experience such sadistic behavior from relatives, professionals and peers. I didn’t have an advocate nor did I ever hear the words, ‘Pain Advocate’.

This wasn’t inspirational at all nor should it have been. This is real every day experiences that no one should ever have to go through…young or old. There are those that never have been there and this is why this post was written and it definitely should be recognized, understood or imagined at the very least.

Yes, I am my children’s advocate and not only because they have asked me to be or that I wished I had one from the start, but also one is needed in these times we face. As I will continue to do so for them as long as bodily abled (which is my greatest fear of all).

Thank you for your written addition.

Many well wishes to you and yours,

Ann Sable

Judith Jermark

I am really sorry that your daughter experienced the unprofessional treatment from the healthcare provider that she saw. There is no excuse for it, and it is not alright, however, it is more common than anyone likes to admit. In medical school, students are not taught bedside manners, people skills, or how to write a prescription with proper spelling of medications. They aren’t taught to listen. A healthcare provider who does not desire to possess these qualities should never go into medicine to begin with. I work in the field of medicine, and working with doctors can be terrifying. I have been yelled at in front of others, embarrassed, humiliated, threatened, and at times in fear of physical violence . One of my employees sustained an injury when a doctor threw a patient’s chart across the room and hit her. Having a patient advocate, or a friend accompany a patient on a visit is best, however one is not always available. Unfortunately, doctors seem to be skilled at intimidation, and some do it better than others. A good physician once told me, “we are told in medical school that 50 percent of what we are taught is fact, and the other 50 percent will have to be learned from our patients”. Patients have power to educate doctors, and patients have money, or health insurance, to pay for their doctor visits. Doctors understand money, and they enjoy it’s benefits. You are correct. The doctor your daughter saw should known who in the community treats certain conditions, in case a referral needs to be made. And, finally, yes, young people do get sick. They have the right to be seen by a provider appropriately and humanely.

Thanks for raising the issue, Lisa. Some people should not practice medicine. This abusive know it all is probably one of them. If he gaslights a new patient while taking a history, he’s psychologically unsuited for emergency medicine (where 95% of patients are new). He might thrive in a research setting, where his anxieties over the unknown do not prompt him to attack the people he’s there to help. Unfortunately nobody explained basic listening skills to him.

Issadora Saeteng

I had to go back and read the comments from the previous piece since I was feeling this itch… lol… I couldn’t imagine what opinions people would have that are legitimately upsetting since it seems that there are always trolls.

I was SMH reading some comments although it appeared that most people could relate.

I feel you had righteous indignation and why not?? Being chronically ill and having a daughter that is too….BOOM… that would do it!

I’ve spent much of my life feeling angry towards what I call the, prove it people or the way too much grain of salt invalidating ones…. I deal with A LOT of marginalization as a fat, black (technically mixed but one drop rule and all lol), disabled, female….

If I share experiences of discrimination, racism, micro-aggressions… I’m often treated with doubt or disbelief. Sometimes I find out latter in time that people said or felt I was exaggerating!

It’s all really hurtful and the healthcare biases…. well documented in rigorous research, is potent!

It’s hard to not feel defensive because I want to defend you lol obviously you can defend yourself but why should we have to?

I don’t feel you overreacted at all and if you did, well so what! Experiences shape our reactions and some things, we know… it’s in our gut… even if we can’t quantify it with some acceptable proof that whatever bias etc was taking place.

Debbie Nickels Heck, MD

I know this is in response to what I wrote and I STILL stand by what I wrote. The Dr MAY have wanted to have known who she’d previously seen. PRESUMPTIONS were made on BOTH SIDES.

Susanne Dean

I am a chronic pain patient of many years. I get it. I got it the first time. I have a wonderful team of specialists that work with my many issues. I am now 68 so the can accept my diagnoses more easily but it still happens. At hospitals. To friends with similar issues,

I carry with me all the time a list of my physicians, medications, diagnoses, and onset. I carry it for both the ignorant and arrogant.

And, if I reserve my right not to entertain physicians with certain judgments, call me judgmental. I’ve certainly been called worse by those Holy Docs.