The worst 40 minutes in my whole life
Fighting an invisible illness
Years back, while I was still struggling to get a diagnosis for my mysterious invisible illness, I reached the limit of my patience. I still remember this incident as if it took place yesterday. It was my first visit to a neurologist’s office.
I really had high hopes for this appointment. After seeing many other specialists before him, all unable to offer me an explanation for my multitude of symptoms, I was hoping he would be the one that would have a breakthrough. I was kind of at the end of the line, facing a dead end.
To my surprise, this prestigious neurologist told me that I was perfectly healthy, that nothing was wrong with me and that I should return to work. I remember clearly his annoyed face when he said to me: “Miss, everything is in your head! You are fine to go back to work!”
In that second, I was shocked. I couldn’t tell exactly what was more painful: the physical pain I was enduring or the frustration accumulated within all those months of useless medical investigations. Or maybe it was the arrogance of this doctor who was insinuating I was a pretender.
My mind was telling me, that at least he could have had the decency to buffer it, and tell me I may suffer of a psycho-somatic disease, meaning basically almost the same thing. I wasn’t aiming for compassion or empathy from him. All I wanted was an explanation for my symptoms. It’s hard to move on when you don’t know what you are fighting.
But him, in his mind, he had taken a decision. He had labelled me as a lazy person trying to exploit the benefits offered by the workplace’s insurance company and avoiding to return to work. Within less than an hour, he turned me from a sufferer into a scammer.
Worst 40 minutes ever
Those 40 minutes spent in his cabinet seemed like hours. While I was there I experienced such mixed emotions. I felt powerless, angry, ashamed and miserable at so many levels.
- Frustrated because the doctors couldn’t help me again. That I was tired to be treated like an interesting case and be passed over from one specialist to another.
- Aching. I was physically aching. Running around from one hospital to another, waiting long hours until the actual consultation in the cold weather with temperatures way below zero were just some of the factors contributing to my chronic fatigue, exacerbating some of my Lyme symptoms.
- Angst because I thought I was getting closer to my death since my whole body was in pain.
- Ashamed because suddenly I had become someone who needed help. My pride dissolved into my anger.
- Hurt because my genuine suffering was left unheard.
- Angered because someone was thinking I was acting. Also for not being taken seriously and not being treated with the respect and care I was deserving, that any human being actually deserves.
- Scared because I did not know what was making me feel that way.
- Worried because I did not know if whatever I had was curable or not.
- Petrified by the idea I will loose my independence completely and I will end up in a wheel chair or even die.
- Lonely because I was an emotional mess and my partner was also sick at the time. I spared him the details of my days, thinking that dumping all my problems in his hands will not help him recover from whatever he was fighting at the time. Therefore, I had only myself to share all of this colossal burden of thoughts.
What about you? What were you worst two minutes? Would you like to talk about it?
Here are other Lyme-related posts:
LYME DISEASE COMES WITH CO-INFECTIONS
CHRONIC LYME DISEASE IS A REAL THING
TOP 10 WORST SYMPTOMS OF LYME DISEASE
WHAT ARE THE SIGNS AND SYMPTOMS OF LYME DISEASE?
WHY IS LYME DISEASE TOUGH TO DIAGNOSE?
HOW CAN YOU PROTECT YOURSELF AGAINST TICK BITES?
JOURNEY TO SELF-DISCOVERY
HOW I FOUND THE SILVER LINING OF LYME DISEASE
9 WAYS TO KEEP A RELATIONSHIP GOING WHEN BOTH PARTNERS ARE ILL
All of the above posts were written by me, as part of my Lyme Disease awareness campaign. They were originally published on my personal website A-ZLYME.COM .
If you would like to learn more about Lyme disease, visit A-ZLYME.COM. On my A-Z Lyme blog, I post weekly Lyme-related articles which I might re-post on Steemit, in order to increase the awareness about this infamous illness.
Please leave your feedback in the comments, I would love to hear your thoughts!
I had a little health problem this weekend. Make that a potential health problem. It was about my bad eye, it had swelled shut.
It concerned me, but I refused to go to any sort of emergency care. I think for me to go to an e room I'll have to be out cold and somebody else making the decisions. Because:
A: Doctors get really sanctimonious and want to know all the gory details on how I lost my eye whether it is germane or not. In fact, it never ever is.
B: They find out I have an auto-immune disorder and spend longer exporting their vast knowledge that is inevitably wrong to me and anyone else that will listen.
All of that to give me a referral in a few days. No thanks.
I had nothing like yours. NOTHING. But I can imagine because I have at least seen the edge of it.
Sorry to hear about your eye. I hope everything is better now. As for me, I was lucky that my family doctor believed me and helped me as much as he could. I did not push for more because I knew that he would risk loosing his license. When the report from the neurologist came to his office, he could have given up on me, but he didn't. ;0)
FOR TSE: I've been exactly where you were at that moment -- for many of the same reasons. My last two major encounters with doctors outside an ER has pretty much put me totally off them. I may find the courage to write a post about them someday myself.
Both times I left their offices with absolutely NOTHING changed from the moment I walked in -- and not even any hope of help from them. The latest one did not even look at me once the whole time I was there. (And I don't mean "examine" ... I mean "glance up in my general direction.")
Her eyes were either on her clipboard or on her computer screen. I mean she did not even LOOK at me before telling me to go straight to the emergency room. Also, she mentioned it was a Wednesday ... so it was a pretty good day to go there.
At least that got me out of her examining room. Which I rather think was the whole point. And yes, annoyed was exactly the attitude from both of them. (About 20 years apart.) As if I had some nerve thinking they could actually help.
If there's not "a pill for that" -- or you don't clearly need emergency surgery, I've decided they're not good for much.
It's really a shame that such doctors are those we entrust with our lives. I agree that ER visits are not a good idea, unless you are actually dying. Otherwise is a waste of time and nerve. In here, it takes about 8 to 16 hours to be seen by a physician in the ER. I always wondered why the heck they still call it ER?
I hate that you even had to experience those 40 minutes. I can imagine that you felt each of those emotions to the extreme.
The worst two minutes of my life is when I went to get a sonogram to check on my twin babies and the nurse told me to look at the screen. She asked me to look at the baby on the bottom...if I noticed no movement. She then told me the baby was no longer breathing and that we lost our child. I have never experienced anything more painful and heartbreaking than losing our child. I never imagined something like that would happen to us.
That must have been terrible and traumatic! I am so sorry. I don't even know what to say. My heart went to you. ;0)
It was very horrible and traumatic...felt like my heart stopped for a few moments.
Thank you~ ❤️
WOW I cannot believe that attitude of that Doctor simply atrocious, and that time sure must have been hell for you.
MY worst time of my life i think was waiting for a medical test and culture to come through, it took a lot longer than normal and was quite stressful even though I am a positive person
Not knowing the results of a test combined wit the waiting part is nerve wrecking for sure. Hope everything was fine!
Ohh yes all is good, in the end it was TB which was the best diagnosis of the options they were worried about so a year on Meds and all cleared of that :)
Sorry to hear you went through this. Invisible problems and the people with them do cop it a bit. You hear stories of people yelling at people for parking in disabled carparks etc due to the fact that the person doesn't look disabled, but in reality they are. It's the same sort of thing.
Mental health problems cop this a bit too, either due to being invisible or simply misunderstood. I've ran into misunderstanding when I was trying to be assessed for ADHD. My GP was hesitant to pursue it because she didn't think it was likely because I did well in school. I had to push to make her pursue it and even then I had to research to get the help I needed because she didnt tell me every option available. A psychologist I ended up with at one point that said she didn't know about ADHD said that she thought it was just a lack of self discipline. I was doubting myself and feeling down on myself for a couple of days after that one before realising that couldn't be true because I was trying too hard for it to only be that. Another person down the line when I first described my symptoms started to suggest continuing antidepressants for three months and putting a hold on the assessment then seeing how I was going then, until I explained in more depth just how much it was affecting me.
As it was both my GP and that psychologist were wrong, and they shouldn't have said anything like that since they didn't know much at all about the disorder, but misconceptions about health problems, mental or physical, are harmful and can be really upsetting, let alone the damage they could cause if we just listen to it and accept and don't push for what we think needs to be done. Your doctor shouldn't have treated you that way, and they shouldn't dismiss concerns at the point that a lot of them may dismiss concerns. That's a horrible situation to be in and I'm sorry to hear you have been in that situation. Some few people may truly be lazy and trying for work comp etc, but many many more of the patients that will be going to that effort to get help will legitimately have a health problem, so assuming people are trying to get insurance shouldn't be the first thing for them to think, by far. Doctors can be frustrating and these sorts of things happen, but what they did to you is not on and the fact it happens to multiple people just makes it worse, not makes it okay.
Thank you for you heartfelt message. Invisible illnesses are maybe harder to fight than other ones because they add extra stress and pressure to those who are already drained of energy and positivity. As for the doctors, most of them are taught to address a symptom, not to treat the root cause. Those who are still dedicated to their profession can't do much either because they risk having repercussions. It's a sad reality but the only winner is BIg Pharma.
I agree with the address a symptom rather than treat the root cause, because a lot of people who aren't neurotypical come across that with mental health where they first get diagnosed with depression or anxiety because that is what is apparent at the top but the underlying issue of undiagnosed ADHD or aspergers etc is a large part of what that person has depression or anxiety. In that case, they actually often think they are treating the root cause by treating the depression etc but it certainly can go deeper and it isn't always obvious. Sometimes the doctors are too quick to write it off as being only the surface issue and not the deeper problem, and other times it isn't very obvious at all that there is something else there and while it is bad for the person who doesn't find out then and suffers longer, they weren't to know either.
But misconceptions and a lack of knowledge about health issues is an issue too. Even when it became obvious to me I had ADHD and I pursued an assessment, I was still running into the fact that not enough was known about the disorder by the people I was talking to, some of the people who were meant to help me had misconceptions about the disorder and it is mostly associated with young boys, not adult women. The psychologist that said it was a lack of discipline knew basically nothing about ADHD and it's common enough that when your job is in medicine, and especially in an area that deals with the brain, they should have known more than that. Or if they didn't they still shouldn't have said that, just like your doctor shouldn't have jumped straight to saying "everything is in your head". They need to put the effort in to work out the actual cause rather than jump to conclusions that quick. That wouldn't be acceptable performance in any other job. They can make mistakes and have off days, but dismissing patients as quickly as that one did to you shouldn't be one of those mistakes. Sometimes even with putting the effort in people will get it wrong (doctors are just human) but that sort of crappy response of jumping to a conclusion without even problem solving and thinking about it and testing and trying to determine the cause is not reasonable at all and instead of that being more okay than another industry doing that, doctors should be more accountable for actually doing their job rather than dismissing people because it is people's health on the line. People could die from them dismissing their issues.
Big Pharma isn't always wrong either though. While there may be someone making a lot of money from medications, they can really help. It's not a magic pill that fixes everything - I still struggle - but I'm doing better on medication for ADHD than not. It's combined with other strategies, but it is a positive part of my life and it helps a lot honestly. At the same time, I also was on epilepsy meds when I was younger (I outgrew it) and I found out later on that even back then I should have been on better ones that had less side effects so medication mismanagement definitely happens too. The issue I had with them trying to get me to take antidepressants for longer instead of assessing me was more symptomatic of them not realising how much I was struggling and basically shrugging it off and saying "well lets try this first" than being them pushing antidepressants (a lot of people with ADHD are on both anyway.) Medication is a complicated thing ethics wise and when it is very helpful but non-essential (as in you won't die from not taking it etc), different people will have different opinions and make different decisions about whether they use medication or not. I've seen this happen in the case of ADHD meds, but it would happen with other helpful but non-live saving meds too. If it is life saving medication, there's pretty much no choice involved, but with others there can be depending on what they are treating.
The thing is though, for some issues, sometimes medication is a great tool and a great choice for a treatment option, but shouldn't be the whole treatment. That's the case with ADHD. Meds are ideally supposed to be part of a larger group of strategies and methods of treatment. I've done more of this on my own, with the main treatment from seeking help being medication, as well as the all important answer. Later stuff like cognitive behavioural therapy (CBT) may come into the mix too but psych didn't want to do that yet. Medication can help a lot but for issues that can be helped in other ways too (some heatlh problems only really can be treated by meds) the other parts of treatment (ones that are scientifically backed or if not can't do harm - like slight healthy lifestyle changes - of course) should probably get more acknowledgement as well in conjunction to stuff like medication, so patients can do the best things for themselves and give themselves the best chance at life with their health issues / disabilities / whatever it is they are being treated for.
TL:DR:
Medication can be good, and it can help people, but sometimes other treatments get overlooked.
Doctors need to not dismiss people so quickly and make decisions and judgements without putting the effort in to find out what is really going on.
Sometimes doctors make mistakes and scratch the surface while thinking they are treating the root cause.
Your doctor was being shit to dismiss you so quickly without putting the effort in and unfortunately that does happen to happen to people and times and that shouldn't be okay.
Sorry for what you have gone through with the doc. That's uncalled for, even if he is a prestigious doc because it sounds very judgmental and not professional. I bless you @lymepoet for the right people and doc to come your way to get this all figured out. I bless your partner to recover soonest too and healing for both of you 💕. Big hugs to you!
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Thank you! I was blessed indeed. Not only that I found a specialist but I found one that helped me regained my health and enabled me to go back to being functional and having a life. Big Hug!
Wow, that is such a traumatic experience. I won’t go into all the details of my most painful two minutes here - but I can certainly empathize with the experience of not being believed and how damaging that can be. Thank you for sharing your experience and validating the experience of many others! <3
Thanks! I learnt that if I don't speak loud about it and I keep it to myself, it can keep on happening to others as well. Like you said, validating the experience of others is a step forward, it helps raising awareness.
These are frustrating times when people of expertise act like they don't care about your struggles. These moments hurt the most.
Unfortunately some of the experts don't even listen to their patients because they are infatuated.
That is so sad that the doctor didn't believe you and just told you to go back to work. I know how debilitating Lyme can be as I've seen it with my sister-in-law. I can't imagine how that made you feel!! I'm glad that you were able to finally get a diagnosis at one point.
A lot of people would not have to see how debilitating Lyme can be, if doctors would be learning faster how to recognize it and treat it in its initial stage.
Sorry you went through all that. I hope you are doing well today. I have not faced a thing like that but there was the time I looked at my phone had 40 missed calls. Never in my life was I so afraid to call someone and it was as bad as I thought my mom has passed. That dropped me to a place of sadness I didn’t know existed. It truly showed me I knew little of loss till that day. It is something that can’t be explained only felt.
Thank you! I am better today because I learnt how to live with it and avoid the things that would trigger certain symptoms.
Those 40 missed calls must have been terrible. I always had this thought in the back of my mind that one day I would get a dreadful call about one of my parents. Although it did not happen, thank God, it's a feeling that always brings tears into my eyes cause we will never be ready for such a moment.