Don’t Be Another One of Those

Don’t Be Another One of Those

Just after the New Year my eldest came down with a cold. She tried dealing with it on her own with OTC medicine until a terrible cough ensued and I encouraged her to go stop at the clinic just to make sure it wasn’t something else. She works in a place where lots of children abound, so it’s always better to be cautious. I came home from an errand to find out she had the flu, Type A. We all were vaccinated. But this isn’t what this post is about.

It’s about what followed.

The insensitivity of the doctor.

Later in the evening she jokingly told me: “Oh yeah, I forgot to mention. When he asked if there were other health conditions I should be concerned about, I told him about the RA and Fibromyalgia.”

Liza Zoelick

I turned and gave her that motherly, lifted eye brow look, half-knowing already what was coming.

“And what, did he say, pray-tell?”

“He said, ‘Who told you that?’” I audibly scoffed and continued in a flurry of excitement that is quintessential me, when I get angry.

“You should have told him a fortune cookie! Oh no, better yet, how about Google, since we, the chronically ill are always deferring to Google and not their Holy Doctors. Trying to tell them how to do their job better.” I snorted. I think she was grateful I didn’t go with her, or possibly entertaining the idea of me going the next time for a good show.

I do not know if this doctor was male or female; young or old, but it was clear, that even being in the medical field did not save them from being prejudice of a young person with chronic illness. And it is a prejudice, though it’s not intentional. We do not often equate young people with the term “chronic.” We can reconcile that they may have acute problems, or that they may have terminal ones, but illnesses that cannot be cured and that will be a life-long issue, that will likely worsen but not kill them- that is a difficult pill to swallow for anyone. It was a difficult thing for me to wrap my head around and I was the one with the illnesses. You inherently either want a definitive outcome, for good or ill, but one that is in this grey, murky, area is a terrible one to live with. Doctors don’t even like treating it. It’s called “managing it” which basically means keeping you as comfortable as they can until death. Sometimes this is super great for people. For others, it can be a rough journey.

This isn’t what is irksome to me. It’s the part where a doctor has the audacity to tell me or my daughter, or a stranger, “Who told you that?” As though you looked into a crystal ball for your diagnosis or are lying. Given the current climate toward those with chronic illness and chronic pain, it seems a poor choice of things to lie about. And let’s face it, if we sat down and thought about children and teens and young adults for just a moment, I think we would all agree that they would much rather be going and doing things that you do when you are that age, vs the things you have to do lets say at my age, 45 and chronically ill. Which is go to the doctor, get ultrasounds, and MRIs and bloodwork, and endoscopies and colonoscopies and the list just goes on because in my case I get told time and time again, “You’re just a difficult patient, not a textbook patient.” So, when that happens you end up costing a fortune, making someone, somewhere rich. I have no idea who anymore, but the point I am trying to make is that young people have a life (which is not to say that I don’t) but they want to go to concerts and get their nails done and date and go to college and have parties and all that is very difficult when you are just trying to work and not fall over from exhaustion, because of your chronic illness. If you take away anything from this, right here, and you are in the medical profession: Remember these young adults are humans. They just wanted to have a normal life. They wanted to do everything their friends are doing on Instagram. And it can be very lonely. It can feel like you’re letting everyone down. So, don’t make it worse by dropping the insensitive, “And, who told you that nonsense.” Okay?

Life is just too f’ing hard as it is. And by the looks of things it’s not going to get any easier. There’s a time and there’s a place. Some people are truly misdiagnosed, but if you think that wait to bring it up. When you come out hauling like a freight train, with “Who told you that?” You undermine the relationship that the patient may have with the doctor who diagnosed them. Instantly, there is doubt, there is embarrassment, or there is anger that will bring hostility and tension into the room. It’s rough being young with chronic illness. Everyone seems to doubt you. Everyone seems to feel that it’s all in your head. Don’t be another one of those. Be someone different.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

 

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.

19
Leave a Reply

2000
19 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
14 Comment authors
  Subscribe  
newest oldest
Notify of
Ann Sable

CICI, thank you, I appreciate your words and I really hope that you are well and staying safe. Precautions to you on here and do not allow others to police you in any way…trust that some will try.

Take care,

Ann Sable

CICI Hannah

I can relate to so much here. As with what Ann Sable has said, I really do get you and what you have gone through and reading between the lines; isn’t that hard to do here. Kudos to you lady! Reading through other comments, in disbelief, just wow! As for the dr below, 🙄 Carry on then, Carry on.

Deborah L Molitor

Ed. This is my goodbye letter as I can not take the pain anymore.. I have 4 organs failing.. Liver.. Kidneys. Heart and lungs I have pulmonary hypertension and my Diaphragm is paralyzed 75% and I have nodules all over my lungs and COPD also I have 6 different diseases on my spine including severe Stenious and Spedo Tumor Ceberi 37 stunts under my belt. Was just diagnosed with Arnold Chiari Malformation. And my WBC is 16. Which there looking for cancer. My pain clinic just called yesterday and said don’t come in cuz we’re letting You go 🙁 that clinic required you to get injections to get a very small amount of pain meds like I was getting 10mg of Percocet 4x a day which wasn’t Working at all. Just wanted to say Goodbye to ED and a couple of patients. So goodbye .

Lisa

Casey Thompson
I too had a B-12 deficiency and was facing lifetime injections. After discovering B-12 lozenges which dissolve under the tongue and enter the body through the saliva, the scheduled injections were cancelled as my level was returned to normal levels.
I found out about this from my massage therapist who’s office was located above a chiropractic center who carries vitamins and supplements.
I don’t know if this will help you but it might be worth a try.
God bless you and Thank You for Your Service.
Lisa

Lisa

I get you!! I get your frustration!! I have been told I’m a Complicated Complex Patient. Too Young to have so many medical issues . My response was, that’s okay, I will make it easy for you, I want a copy of all medical records and I will find a more qualified physician to care for me thank you, with a smile on my face!
Sometimes you just have to move on.
Keep your eyes and ears open when seeing the Doctor’s who are responsible for your care. You are your strongest advocate. Research what issues you are diagnosed with because with the hundreds of people the doctors see on a regular basis, they do miss things and tend to put Everyone in the same category and standard treatment boxes. And we all know that is a problematic. We all do not respond in the same way.
Bottom line, you have to be comfortable with your caregivers and everyone is human. We all have our off days but if it becomes a pattern then it’s time to go elsewhere and find a better fit.

Ann Sable

Now now…that was a bit hasty there, but I can actually relate. It can and does go both ways there, docs. When a person has gone through so much bull crap over and over again for many years and then being treated like dirt, that you’re making it up, it’s all in your head, getting so many different interpretations for each thing that is wrong with you (never a straight answer) and being a Guinea pig for meds and such that doesn’t work; well that can cause you to become defensive right off the bat. Especially when it comes to your kids and playing ball with them. No one wants that done to them. Gun shy all the way. My kids are grown, and yet, they still ask me to come along to dr visits for things such as this. I don’t ever want anything that I have been through just to have my children have to do the same. I don’t fly off the handle, but try to get the dr to clarify exactly what they are intending first. A couple of tries and then I have to step in and call them out. Been in the medical field for far too long in the past. Something I never tell anyone until this very post. It’s an embarrassment, really. That’s why I walked away long ago when such things started to sound salty.

With that being said, could of handled it differently? Maybe so. But then again, from a humanly and mothering standpoint, protection surfaces before all reasoning. It’s hardwired. We are all humans and will act in a humanly fashion without thinking most times…

Marty

You got awfully AUTOMATICALLY ANGRY when JUST PERHAPS the Dr was LEGITIMATELY ASKING who your child’s Dr as PERHAPS that Dr MIGHT have been a BELIEVER in FIBROMYALGIA & MIGHT have wanted to know WHO ELSE in the community WAS AS WELL. You gave NOTHING POSITIVE in your narrative but DISGUST. As a physician, YOU DISGUST ME.

Well look who else got very angry and judgmental, from just reading an article. Carry on good Doctor….

David Alvarado

Is it safe to say,that good ol’hard working American,s especially chronic pain patients like myself cannot seem to get a fair deal in trying to see a pain management doctor and not get compared in the same group of people that use pain meds and among others for recreational purpose just to get high and nothing more at over 55 years of age,I get the same speech from my doctor,That people are dying each day,chronic pain know that but we all try to do it the right way,get tested on urine monthly test,pill counts etc.yet street level is still going to exist in our society,law makers need to get a reality check,anQuit punish ing the wrong group.We all try to work ,hold down jobs and provide for our families.and try to cope with are pain,broken bones ,knee problem s,back surgery,s accident recovery patient s the list goes on..

michelle

Liza I wish you’d find out that Drs name and print this out and send it to them. No Dr should ever treat a patient like this. It’s beyond wrong . none of us asked to have these horrible pain causing diseases , illnesses. My life has just about been ruined by my 20+ diff pain causing , no cure ( & in some cases not even a treatment exists like for a lot of us) and the depression that comes with it all then being force tapered on my meds , leaving me feeling so angry, furious , sad & at times THINKING of the escape of it all by fantasizing of moving to a euthanasia state- I have children , grands & family i will never do that too, as I’ve seen & felt the aftermath of losing someone to suicide , for me it’s a coping mechanism i think. Anyway if ALL Drs AND nurses , health ” care” workers could wear our shoes for ONE day i swear they’d be grateful to not be us & THINK BEFORE they speak and make judgements on patients, HUMAN BEINGS, causing irreparable HARM just by implying a patient is lying etc. It’s really insane for anyone to do that to another. Your daughter wasn’t asking for pain meds or anything. He or she( the Dr) ASKED and your daughter ANSWERED. Why ask if you’re not gonna believe the answer? I feel it was a set up . it’s [edit] as hell and FULL SHAME on that ” doctor”- i use it in quotations because passing tests and graduating doesn’t make you a physician, taking the oath to first DO NO HARM, which includes psychologically, and HONORING that oath is what MAKES you a Dr. Kindness matters, snarkiness and being a jerk makes you the opposite imo. And some might say the ” Dr” is burned out- fine then quit / GET OUT and find a job and life that doesn’t involve dealing with other HUMAN BEINGS?! Im so f fed up with these apparently money hungry greedy ” Drs” and yeah i call them that because THESE type do NOT care about other people or they wouldn’t do this? Im so so sorry your young daughter is ill and being treated so crappy .

Issadora Saeteng

It’s their psychological helplessness and fear … conscious or not…. some people are deliberately prejudice though… but that aside… there exists much robust research literature finding this sort of data that many blame the person, deny, avoid, invalidate because it reminds them of there own vulnerabilities especially if they have kids or are young too…. not to mention… most people prefer to think bad things don’t happen or if they do, it’s somewhere very far away from them!!

Thomas Wayne Kidd

Thank you for the fine article. I am almost 68 years old and have been treated like this because of my undefined chronic pain. It causes me to be angry many times. I facing an uncaring doctor who has decided that I need to be sent to a Methadone or Suboxone clinic, doesn’t matter that I have been going there for 15 years will a perfect record. I understand you and your daughter’s problems with doctors very. God bless you and yours.

Susan Domokos

Soo…my daughter works for a local hospital system and i asked her if pain med records are tagged someway so it shows when you go to emergency room…..and YES THEY DO…as soon as the er pulls up your profile a PROBLEM LIST appears with ALL opiates..visits for pain..and any problems related to pain show up….sooo….being profiled in the er is very real…they do not ever move passed it and treat us [edit] without even hearing us or treating us with dignity or respect ….somehow this has to change…luv to you ALL..susan

Debbie Nickels Heck, MD

You got awfully AUTOMATICALLY ANGRY when JUST PERHAPS the Dr was LEGITIMATELY ASKING who your child’s Dr as PERHAPS that Dr MIGHT have been a BELIEVER in FIBROMYALGIA & MIGHT have wanted to know WHO ELSE in the community WAS AS WELL. You gave NOTHING POSITIVE in your narrative but DISGUST. As a physician, YOU DISGUST ME.

When my doctor retired after being harassed by the DEA, l was sent to a pain doctor. I was diagnosed with CRPS ten years ago by a well respected neurologist. When the new pain doctor came to the door of the exam room he said, “who told you you have that?” I said, my neurologist. He then told me l didn’t have crps l had lower back pain and needed injections. He never came in the room, didn’t examine me, didn’t so much as take my blood pressure. I don’t have back pain, l have pain in my hip down to my ankle after fracturing my hip , femur and ankle. This doctor wouldn’t even look at my X-ray. Thankfully l found a new, understanding pain doctor and hope to be able to stay with him.

Lisa Osborne

It’s pretty rough when you get old, too. As you get older, it seems like the diagnoses stack up. There seems to be an increasing correlation between the white in my hair and the degree with which doctors dismiss me and patronize me. I am not simple-minded because I am aging. I have a list of diagnoses and beside each one is the real live doctor who gave it to me. They are all specialists and not one of them are Dr Google, yet I still end up defending my diagnoses, particularly in the ER.

Sarah

Amen.

Casey Thompson

Thank you for this! I have pernicious anemia that was finally diagnosed just over 10 years ago, after 5 years of rapid decline. You would think that with as much as your body needs B-12 it would be tested in the initial labs but sadly you have to fight to just get tested. I got a new doctor at the army hospitals neurology clinic all those years ago and he came from overseas and had seen it. There is no cure because my body doesn’t produce intrinsic factor which is what is required to get it from the foods you eat which is how it differs from just a B-12 deficiency. There is no cure, and only one treatment. B-12 shots for life. Whenever I change doctors I have to ask for a script and I’m often told to eat more salad which is not a source of B-12 or I’m told some other crap from actual doctors. I almost lost everything and have terrible nerve damage due to the myelin sheath over the nerves being eaten away, along with the damage to my brain and spine. There is a pediatrician who had it and was almost on hospice because he was dying and neither he nor his colleagues thought to test for it. When I mention I have an intrathecal pump with meds in it to numb some of the pain I get looked at but would I have it, as expensive as it is as well as fragile, if I didn’t need it? I was in the hospital over thanksgiving and they tried to get me to turn it off (which I can’t do) or judge me, but I did end up meeting three people who knew just how bad PA is on the body. Neither were doctors.

Susan Domokos

Maybe if we all file “denial of care” or “dereliction of duty” with our insurance companies..especially Medicare…maybe something can happen….

Susan Domokos

My psychiatrist suggested yesterday that i am either bi-polar…have ocd…or add/adhd…the last one i am to be tested for on 2/28…..maybe i am obsessed….obsessed bc when i was forced off fentanyl in 2011 i was so distraught bc NOBODY HELPED ME..i ended up having a heart attack on my 49th bday…and OPIATEWITHDRAWAL on my med records….this [edit] has followed me to today..my 57th bday….i think i broke my big toe and guess what…NOWHERE TO GO….cant handle the judgyness…and to add to that..i am 43 days without pain meds and almost bankrupted buying medical mj…so none of that either…i called Jansenn Pharm yesterday to bring attention to the BLACKBOXWARNING against stopping pain meds cold turkey..i have filed complaints with Medicare and Humana…omg..my life is upside down….happy [edit] birthday to me…