With chronic illness there seems to be a certain stigma among medical professional and the way that people who suffer get treated. This is not just an opinion but but a fact. There are shows -The Today Show just recently (July 2018) did a piece on how women with chronic illness are treated poorly, differently and as psychiatric cases…, but people with chronic illness in general are classified as psychiatric cases- told there’s nothing wrong with you, it’s all in your head (as I have been countless times in ER’s and by Dr’s), are turned away from ER’s, hospitals, Dr’s offices, (I’m currently being denied treatment by the two largest GI practices in the State I live, which encompass 95% of all the GI Dr’s because they are owned by the same parent company), we are called drug seekers-drug addicts just because we may show up in an ER and “may need” pain meds. Whether or not we are on a pain protocol already or not with an outside Dr has little bearing on their opinion. Their opinion has already been formed. We are called frequent flyers at times to our faces, behind our backs or even within earshot. Dr’s are brazen enough to falsify patient medical records with blatant lies. I had that happen to me at the hospital sometime in the last two years and have been spending the last year trying to track down how, who and when it occurred, even though I have a strong suspicion as to which Dr placed it in my record. I was in the ER in April of 2017 and had already been twice that week due to several weeks of a severe flare, not being able to hold anything down and severe diarrhea, weighing only 74 pounds and having that week already received during each visit 3 bags of fluid and 2 potassium riders due to severe dehydration and potassium levels of 2.3 and 2.4. Yet this time this Dr insisted that there wasn’t a thing wrong with me, my illness was all in my head, that my GI Dr sent me there because he didn’t feel like dealing with my histrionics, when in reality, my Dr sent me there to get re-hydrated, didn’t have office hours and with the request to have me immediately transferred to Temple hospital to have my nj-tube placement moved up because my situation had become dire. This Dr. continued to badger me and refuse me treatment as did his nurse. I got loud and very rude with both of them and walked out. It wasn’t long after that visit I started getting questioned about being a heroin addict. I’VE NEVER USED, SEEN, OR TOUCHED HEROIN! But in any case I went through all the channels to get to the right department to talk to someone and this lady said she would mail me paperwork to file so I could have the research done on how this occurred. Well a couple of months later I got a cover letter referencing our conversation and stating enclosed is the requested paperwork – yet there was no enclosed packet of forms!
In another visit-During inpatient stays it’s not uncommon for a nurse to do a “skin check” where she may look at back, tummy, elbows, bottom of feet, knees- but that if the extent of it. Yet, during that stay, I fully strip searched twice down to my panties and then required to pull the back of the down and expose my rear end, my bags searched on several occasions-especially after every time my mom came,and they kept searching my bed. What’s crazy is they had me on a bed alarm for a good bit of the time and watched my every move so I don’t know what they were looking for and this was not a psych watch! Yet stories like this are not rare. I read ongoings like this and much worse at hospitals, facilities and Dr’s office’s all across the country in posts by my friends and other GPers who belong to my Facebook support groups. They are tragic and and heartbreaking. No one should be afraid to seek treatment, yet myself and tons of others deny themselves treatment and refuse to go to the hospital, ER, or Dr unless they are about to die or are on deaths bed.
Recently, in April, I had sepsis, pneumonia and a line infection. It had started out with a fever of unknown origin for seven weeks. I’d presented to the ER twice with this fever to have cultures drawn and they had both come back negative at the time and I’d made an agreement with the treating Dr at the time if my fever was to get worse that I would come back, but because I wasn’t showing signs of a line infection it wasn’t good idea at the time to stay and be at risk of getting one. Well eventually my fever spiked.
It was 104.6 and i’d been having convulsions and seizures at home. I took close to 3000 mg of Tylenol before going to the hospital. And the only reason I went was because my infusion company said it was dire that I go asap! By the time I got there I only had a temp of 99.8 and the ER triage Dr said: “why are you here? You don’t even have a real temp? I told him that my temp had been 104.2 and 104.6 that morning and early afternoon and I had a picture of it and that I’d been having convulsions and my mom told me I had 2 seizures. He snarled and said “convulsions?” “Seizures?” Then he asked in a snarky manner why isn’t your primary Dr dealing with you? Did he discharge you from his service for some reason?” My Dr only has office hrs every other week because he’s in the hospital on the other weeks. I told him “No-my infusion company sent me, but I saw my Dr last week for chest x-rays for possible pneumonia last week and my infusion company is worried about sepsis.” He snapped at me: “You don’t look septic!” I told him you didn’t see me this morning! He continued to chastise me that this was all in my head, that my family dr, didn’t want to deal with me, and just to appease me they would draw blood. I just came right out and said “why don’t you just do your job!” They then sent me back to the waiting room. While I was in the waiting room I started to have severe convulsions again and asked for the charge nurse who’d already been abundantly rude to me to come help me. As I’m sitting there violently shaking in the chair and almost unable to speak I mumbled if I could lay down. Mind you she’d been sending many people back ahead of me that came in long after I’d arrived. She made a bitter comment and put me on a vacant bed in the hall, continued to send people back and my shaking continued to escalate till the bed was rocking. I flagged a tech and asked her to take my temperature and when she did it had gone up to 103.9. she grabbed the charge nurse as she was walking by and alerted her and her face dropped. The charge nurse then asked for my vitals. They got my blood pressure 72/51 and had to physically hold me down to get a manual heart rate because i was having such bad convulsions, my bp was 185. At this point the nurse realized she royally screwed up as did the Dr and got me a bed in the back STAT. I was immediately give a CT scan of my chest. Soon my blood work came back as did my scan and I was positivive for sepsis and pneumonia and a line infection. I had to spend the next 19 hours in the ER waiting for a bed on a floor and in the ER they had to pack me four times with ice to bring my fever down because it was fluctuating between 103.9-104.4. I also had three seizures as well as continued convulsions.
Recently though, if not for my infusion company commanding me to go get cultures for my white blood cell count being high I’d not have gone to the ER for this last round of infections/sepsis and ended up being much much sicker than I was especially considering the sepsis was already in my heart, that pieces of the mass had embolized septic pieces to my lungs and there was an unknown fungus growing in my line. The infection and culture (being as it was a fungus, had to be sent to the Mayo Clinic to be cultured).
Yet at the hospital where I ended up receiving treatment I was so afraid to go to, because I’d had such a bad experience at two years ago, I swore I’d never go back unless it was in a body bag. I was severely harassed, cussed out and even threatened while in that hospital by staff and fellow patients. But I can say, this time I did get really great treatment I can say that-not a single complaint at all, but I was in full panic attack mode before going, anxiety attacks while in the ER, and had a total meltdown when told I had to stay. Yet I calmed down when I got settled into my room.
But having medical anxiety and Medical PTSD is very real. These are just some stories that are contributing factors that have fed into mine and make me want to run with my hair on fire screaming from having to go. Just the thought of going sends me into a full-blown panic. I read online how it does this to many other people too. I’ve seen where many people would rather disconnect all their tubes (feeding/eternal) and deal with letting life takes its course because the medical profession hasn’t helped them thus far and does little to nothing to lend them a hand. That’s so often how I feel. All every Dr ever tells me is “you’re very complicated!” one Dr even sat there and told me “you’re more complicated than all of my terminal cancer patients!”….UM geeze Thanks….what am I supposed to say to that and how am I supposed to feel with that? Not all warm, fuzzy and welcome that’s for sure! Makes me feel like a lost cause and even less likely to go in.
It’s often a battle between me, my care team, my infusion company and other providers when it comes to getting me to comply with having to go as I read it is for many suffering with chronic Illness for the same reason. Our anxieties of not being believed, treated like a pariah, a drug seeker or like were crazy is just not worth it to us.
Keeping our dignity and pride is about all we have left and were not ready to sacrifice that to anyone!