One morning, several years ago, Mr Happy went to put on his shoes, but got ‘stuck’ with excruciating back pain. He had to lay on the ground, cancel work, and call a friend to take him to the doctor. He was completely disabled. But when he painfully limped into our doctor’s office and explained his symptoms, the doctor just shrugged and said,
“This is normal now that you’re getting older. Take some Nurofen and you’ll be fine.”
Mr Happy was only 27 then – hardly ‘getting older’! So we went to our chiropractor for a second opinion. He ordered a scan, which showed a severely bulging disc that was pressing on the nerve.
At the time, Mr Happy was fit and healthy, and so had had little experience with the medical world. He was stunned that a doctor could be so dismissive, so uninterested in finding out what is wrong, and fixing it. After all, isn’t that the purpose of a doctor?
Mr Happy now has post-viral fatigue, and so has had a lot more experience with the medical world. But I know he wasn’t alone in having an idealistic view of what doctors do. When I explain to people that I have several chronic illnesses, one of the first questions I get asked it usually, “Have you seen a doctor about it?”, as though all I need to do is see a doctor, and they can magically fix me.
But you’re lucky if you can find a doctor who has even heard of dysautonomia, let alone knows how to treat it. If you’re also wanting a doctor who listens, is at least semi-compassionate, and who doesn’t have a waiting list 12 months long and/or or cost an arm and a leg to see… good luck. Those are rare beasts.
I reached out to my online dysautonomia friends in Australia and NZ, asking them to share something stupid their doctors had said to them. I’m hoping it will help healthy people understand why getting diagnosed and treated isn’t always a straightforward process; that it might shed some light on why many people with chronic illnesses get anxious about seeing a new doctor, or are pessimistic or bitter about medical professionals.
* * *
Saw my GP today. She said, and I quote, “You might need to just suck it up and keep fainting instead of trying these different medications your cardiologist prescribes”. I couldn’t believe my ears. I don’t know how a doctor could actually say that to someone they are meant to be helping. She obviously doesn’t know how debilitating it is to be fainting all the time. (This is the same doctor who tried to force me to take antidepressants before my POTS diagnosis, because my symptoms were “all in my head”).
Our specialist called us in for an appointment. An outing like that means three weeks of being housebound as my daughter recovers. But he said it was urgent, so we booked a baby sitter, and made the long journey to the hospital. It turned out he just wanted to give us some test results, all of which had come back normal. And when I told him that my daughter’s symptoms had become so bad, we were just about giving up on life, he said…
“Oh well, don’t ask me. I just cut people open.”
We left crying.
When I mentioned that my heart rate rises a lot when I change posture (for example, when I go from lying in bed to standing up), the specialist said to me,
“Do you get anxious every morning, when you get out of bed?”
I was initially misdiagnosed with anxiety (instead of dysautonomia). When I questioned this, my GP lost it and yelled at me,
“YOU HAVE SERIOUS MENTAL HEALTH ISSUES! YOU NEED TO STOP CONSIDERING OTHER CAUSES!”
My endocrinologist told me,
“You need to take time out, smell oils, teach your husband to give you massages, and hire a nanny. In a few years, it will work itself out. You’re just stressed.”
When I first started fainting, they sent me to the visiting school psychiatrist, who promptly told me,
“You are fainting because you were adopted, and you’re taking it out on your heart”.
I cried for three hours.
I’ll never forget that rude and insensitive comment.
(Note: it wasn’t until 17 years later that Stella was correctly diagnosed with dysautonomia and inherited heart and connective tissue disorders. She has since had an icd/pacemaker implanted).
After immune suppression therapy, my dysautonomia has gone into remission.
When I caught up with my GP, and told her how I am now able to go for walks, she said,
“It’s good that you realise now, how bad being sedentary is for you”.
I explained that I had ALWAYS known that being sedentary is bad for you, but that I hadn’t had a choice: before my remission, I had just been too sick to exercise.
She just grimaced at me with that particular disbelieving doctor expression.
I mentally banged my head on her walls.
One specialist told my daughter to stand in the corner, as a treatment for dysautonomia.
“Standing in the corner will re-set everything, and the corner will catch you if you faint”.
$350 bill on the way out.
I went to see the head of a cardiology unit.
He proceeded to search for POTS on Google*, and brought up the Wikipedia page, saying,
“Hmm…what drug should we give you next?”
My doctor told me,
“You need to push yourself to exercise – even if that means you don’t have enough energy to eat dinner”.
A very well-known doctor decided there were only two explanations for my symptoms: either I had a tumour, or I/my Mum was making up my illness. He favoured the “making it up” theory, but did an MRI scan to humour us. When it came back clean, he said to my Mum, “You must be very disappointed that your daughter’s brain MRI didn’t show a tumour”.
When I went to see a specialist, I listed my symptoms. He responded,
“Oh, I don’t actually know anything about this. I’m just filling in for a friend – I’m actually a kidney specialist. I won’t bother sending your blood away for testing, because that would require me to send it here, there, and everywhere. I think it’s probably your kidneys anyway, so I’ll just run some kidney tests.”
It wasn’t my kidneys.
My doctor said to me,
“There’s definitely something wrong, but I can’t help you. You seem depressed… wait… why are you crying?”
I turned up to my cardiologist appointment to get my heart monitor results. The cardiologist said to me, “You can see here that your heart stopped for five seconds, and that’s what caused you to pass out. I don’t need to see you again.” I was shocked. “Wait, what? My heart is stopping?! Aren’t you going to do something about it? I thought we were going to try medication, or consider a pacemaker if we found my heart was stopping?” He just shook his head and said, “No. Dysautonomia is too complicated. I don’t need to see you again.”
(Note: A different cardiologist gave her two medications to try, and when they didn’t work out, he organised for her to have a pacemaker implanted. It’s made a big difference to the amount of times she passes out).
Because my symptoms worsen when I’m upright, a young ED doctor asked me,
“Are you sure you’re not just having panic attacks every time you stand up?”
When my daughter was gravely ill, and in hospital, I asked one of the doctors what the plan of action was for treating her autonomic dysfunction.
He just replied, “PASS!” and left.
When my neurologist was looking at the results of my tilt table test, he said,
“Your results show that you most likely have POTS, as your heart rate definitely goes up more than 30 beats per minute when you change posture. But I don’t think that’s what you have. I think you have post-viral fatigue, and there’s nothing I can do to help you, you will just get over it.”
I stared at him and said, “But the test shows I have POTS? And all my symptoms fit that diagnosis.”
He paused, and then replied, “Oh, I’m not comfortable diagnosing you with that. But I’m sure it’s just post viral fatigue. You should probably see a cardiologist. There is no need to see me again.”
I have never felt so discarded in all my life.
When I was in hospital, getting a diagnosis, the nurse asked me,
“Do you have a crush on the doctor? Every time he comes in the room, your heart rate rises!”
They had failed to notice that whenever the doctor came into the room to talk to me, I was polite and sat up to show I was listening. It was the sitting up that made my heart rate rise.
When seeing a specialist for the first time, I listed off some of my major issues that I thought he should know about. But when I told him about a huge, life-saving surgery I’d recently had done, he responded,
“Oh, those things never work!”
And then he laughed.
I was talking to my doctor, and started crying about the fact that I am unable to have sex with my husband, due to one of my medical conditions. I was disappointed, and upset. He just shrugged and said,“You’ll get used to it”.
I was speechless. Would he be so blasé about it if it was HIS wife who couldn’t have sex? I think not.
In an appointment with a private gastrointestinal specialist, I asked him what I thought was a pretty straightforward question about my symptoms (within his speciality).
He replied, “Your issues are above my pay grade”.
(Note: That 20min appointment cost Erika $150, so I’d hate to think what the pay grade would have to be for someone to help her!)
I was admitted to hospital because every time I stood up, I fainted. The specialist consultant at the hospital told me, “You just have to tell yourself not to faint”.
So I stood up and walked to the toilet, and then promptly fainted. When I came to, the nurses asked me why I had gotten up without assistance. I told them that the consultant had told me that all I had to do was tell myself not to faint, so I figured if the treatment was that easy, I’d give it a go!
I asked the urologist why I get constant urinary tract infections.
“Just bad luck,” was the reply.
I had to pay $140 for that ‘medical opinion’.
(Note: A more helpful urologist diagnosed Vicky with interstitial cystitis, and damage / inflammation throughout her bladder, both of which make infection more likely).
My daughter was in the ER with a heart rate of 230.
When her specialist read the report, he said, “I think that they just read the reading wrong”.
Apparently all six different people in triage and ICU misread that reading…
When I asked my doctor about my symptoms, he told me,
“It’s just because you’re young and thin. You need to eat more so you don’t look so anorexic. And you also just need to get used to it”.
It made me second guess myself for a long time.
I was in hospital. At that time, I couldn’t even sit up without my heart immediately hitting 170bpm or higher. My rheumatology team suspected I had POTS, so they requested a cardiologist come and see me, maybe arrange a tilt table test and discuss medication options. The cardiologist arrived, and spent all of 30 seconds with me. Took my pulse lying down, but didn’t bother to do any sitting or standing tests (despite that being the reason for his consult). Then he said,
“I don’t know why you’ve called me here. You have too many other health issues, so it will be too hard for me to figure out exactly what is going on with you. It would be best if you just learnt to deal with it”.
And then he walked out.
I asked my doctor if he thought it was worth me having a tilt table test. He said,
“It is a worthwhile test, but I don’t think low blood pressure is your issue, so there’s no point in you having one”. Yet later in the appointment he took my blood pressure and said,
“Hmm, 90/60? Your blood pressure is low. I’m going to prescribe you some medication for that”.
In a report from my doctor, “I think Zoe is attention seeking, although that SVT that I heard during her consult probably should be looked into”.
(Note: SVT is an abnormal heart rhythm)
* * *
I sometimes see patients that are rude and demanding, swearing at their doctors and nurses, expecting everyone to wait on them hand and foot, and jump into action whenever they are called. They think the universe revolves around them, and have no patience or consideration for others. If a doctor is not inclined to put themselves out to find out what is wrong with that kind of patient, I don’t blame them. But that’s not what I’m talking about here.
I also know that medical professionals are human. They get tired, they get sick, they have bad days, they make mistakes. That’s okay too. I mean, it’s not great, but I do understand. But I’ve been sick for twelve years now, and have seen a lot of the medical world. In all that time, the amount of wonderful doctors I’ve seen could be counted on my fingers, but I’d need to have as many legs as a millipede to count all the others.
Here’s the thing that concerns me: uncaring comments aren’t just a problem in themselves. The issue is the attitude that they display, a way of thinking that can be a barrier to getting proper treatment. If your doctor doesn’t care to help you…who will? And how are you going to diagnosed and treated, without medical help?
If you have been on the receiving end of a stupid comment from a medical professional – I want you to know that you’re not alone. But mostly, I want to tell you that if your doctor isn’t dedicated to helping you get better, keep looking. I know you’re probably sick of spending so much money and energy (usually both limited resources when you’re chronically ill), only to leave every appointment disappointed. I know you’re probably tired, and discouraged, and you feel like giving up on doctors altogether. You’ve probably thought about just putting up with your symptoms, accepting that this is your life now, and there’s nothing that can be done about it.
Don’t give in.
If you need to take a ‘doctor holiday’, that’s okay.
But have a break, and then dive back in there.
There are wonderful doctors out there.
And when you find one, it can make a whole world of a difference.
Your health is important.
Your quality of life is important.
And YOU are important.
It’s okay to expect your doctor to think so too.
¹ Reflections Of A Bear is all for doctors researching illnesses they’re not familiar with. But seriously… Wikipedia for medication prescription help?! There are far better resources!