Before you read this story, again a disclaimer. Everything you read is the way I have experienced it and have memorized it. This is my side of the story. I am sure that this doctor has had good intentions, but I also think he has gone too far with the things he said, as I remember it correctly. Mind your own business.
This is a sequel to ‘You’re not going to die from a little blood loss, girl.’ So I got a treatment with iron tablets from the gynecologist. This worked pretty well. After several months, my iron levels appeared to be in ok again. Fortunately, I could stop taking the iron tablets, because that’s no fun at all. I felt the energy coming back. I was also able to get back to work again.
However, I continued to keep complaints to my eyes, I remained hypersensitive to sound and also my concentration was reduced, it all costs more energy.
After I had stopped taking iron pills it took a week or 4 before I started feeling worse again. My eyes became crazier, the focus took even more energy, every sound came in louder and I became more tired.
The gynecologist decided to refer me to the internist. Now I hope that all our blogs are written from a fairly neutral perspective. Without taking too much of a victim role. I do not feel resentment towards the doctors in my previous blog post. A mistake was made, making mistakes is human. We have been able to talk well about it and, as far as I am concerned, it is ok. So this blog post may have a slightly different tone. The internist has said quite special things.
The internist. When I first went there, I had no idea of all the struggles that were waiting for me. So it’s hard to get back to what I felt then. But let us say that I was still trusting the doctor’s knowledge, I fortunately had not lost my faith in the doctor’s knowledge after the mistake that they made in the same hospital.
I told the internist my story. I told him that it felt like something in my head was no longer going well. As if the shock made my veins stuck together and that they have never been opened up properly. I also told the complaints: fatigue prevailed but I also appointed hypersensitivity to sound and light, my crazy eyes and the diminished concentration. The internist examined me physically and found no visible or audible reasons why I felt the way I felt.
‘It’s a burnout, I’m sure!’
Also, nothing special came from the blood tests. Yes my iron levels were all just above the lowest limit but this certainly did not explain my complaints. I don’t remember whether it was during the first or during one of the following conversations but he told me I had a burnout. I was immediately amazed and said, huh? I don’t feel any stress nor did I have had stress before bleeding. I love my job and I’m not working too much, I have a lovely house and a super sweet partner: I do not have a burnout. Something is not going like the way it used to go in my head.’ I also named that I was hoping I thought that it was a burnout, because then I could do something about it!
But the man did not listen to that. He told the female colleagues of him who were around my age fell all have the same symptoms. All a burnout. So it was super logical that I also had a burnout. My response confirmed his diagnosis and as long as I wouldn’t accept that it was a burnout, I wouldn’t get better at all.
Testing 1, 2, 3.
So there I went home, feeling empty. So it’s a burnout. At home I opened the laptop and deepened me in this topic. Fortunately I found some self-tests that I also filled in immediately. The first Test: no burnout. Then the following test: No signs of a burnout. Then a third test: Nothing came out here too. There were many questions about the work situation, annoying managers, workload, high expectations, etc. Also questions about physical complaints: high blood pressure, restless feeling in the body, constant muscle tension, high alertness, not being able to handle things mentally. None of that I recognized, yes the question of whether I was tired and the question of how my sleeping was going. But no test showed that it was a burnout.
Somewhat confused I went to the GP. What should I do? I’m really still too young to feel like this 24/7. The GP still wrote Iron tablets before and after a couple of weeks, I felt better again. But this was short lived when I stopped taking the iron tablets, my results dropped to just above the lower limit.
It wasn’t so that I was going to get a blood-test, saw the lowish levels and thought: Oh shoot those results are low, jeez I feel so tired/bad. No I went to get my levels tested because I felt worse again. And the levels then showed exactly how I felt.
Back to the internist
At the internist I gave the same complaints and told the doc that I felt better when my iron levels were in the middle of the normal range. He laughed a little and said, that’s between your ears, that can’t be the case. Your iron level is still within the norm so that does not explain your symptoms.
I also told him that I hated this feeling of fatigue, the hypersensitivity to everything and a brain which does not work well. He said that as long as I had these feelings of hatred, I would continue to feel so bad. If I couldn’t accept that I was now who I was, then I never got better.
I then told him that my mother has celiac disease (gluten allergy) and is therefore very tired. He jumped up and said with certainty: then that’s it! Your mother has just given you a bad example. It is very logical that if you have always seen a tired mother, you will be doing this behavior yourself. He compared it with obesity. In obese parents, these children are also very likely to develop this. I was stunned: Did he say this really? He made it one step worse by saying: If your mother had been a real go-getter, then she would have given you that example and you were not so tired now.
‘Your mother is not a go-getter’
I almost fell off my chair. If there is someone who is way to good in pushing through, then that is my mother. Unfortunately, I didn’t have the guts to say: how dare you to say something like this? No, I went back home wondering about what just happened.
So this doctor wasn’t going to help me any further. However, I made a follow-up appointment because I had to have a referral to another doctor.
The appointment was in the middle of iron treatment and so I felt reasonably ok. I told him that my energy was back, but that I kept having my eyes crazy. If I had to focus somewhere with my eyes (for example when peeling a Kiwi), it went wrong. I got very tired of doing so and got a weird feeling in my body. Also concentrating on things remained hard and cost a lot of energy. Sound came in louder than normal. I asked him if there was not another doctor who could do something about it? No, he said chuckling, it’s all between your ears.
I gave up and told the doctor, if I continue feeling like this, I can learn to live with it. It is then different than normal but OK this is doable. The doctor had to laugh again and then said: Well, if you now accept that this is it, then of course you will never get better.
Again I was amazed and only at home I remembered the remark of the time before. If I keep fighting against this feeling, I never got better. But now he said if I accept that it is as it is, I never get better either. What should I do then??
He has given me, after a begging letter from me, an iron infusion. At least.
‘Hello Dear doctor! Don’t you see those red flags?’
In hindsight, I think my crazy eyes, the hypersensitivity to sound and the diminished concentration should have been red flags for a slight form of brain damage. Also because I kept saying it felt different in my head. If, later on this year in America, it appears that there is a decreased blood flow in some parts (or an excess of blood flow) of my brain, then I feel like I want to talk with this doctor again.
Because how can a doctor, without listening properly, say to a young energetic woman so easily ‘it’s all between your ears’. A woman who is still in the middle of her life and suddenly became so sick. No signs at all, yet barely a specialist visited, no signs of psychological stress, pushing away so easily. And then don’t even have the guts to refer me to a psychologist. Sometimes, the conspiracy voice in my mind thinks that this hospital did not want me to have suffered brain damage after their mistake. That they have done everything to put me on the wrong track. And yes, that is how he succeeded, and that makes me very sad.
The result of not being heard
Because how would my life look like when I was immediately put into a rehabilitation trajectory? And not being left alone by this doctor? If I didn’t have to take all those other steps that sometimes did more harm than good? More about this later.
Moreover, 3 years later, another internist has determined that with my complaints I have to sit in the middle of the normal ranges of iron and no longer am allowed to drop to just above the lower limit. But this on the side.
As far as I am concerned, this whole story shows how a doctor’s opinion can send you the forest of the unknown. And what follows is a long-term search, doctors visit and some more doctor’s visit, research after research, medication and some more medication, costs at expense. Because no I’m not better and no I can’t do anything about it. I know very well where things go wrong but you didn’t listen, you had your judgment ready.
Why aren’t you better?
And in the meantime I am the one who has to defend myself all the time. Why aren’t you any better? Do you really have to go to another doctor? Tell me, how many doctors have you already visited? Do you know what that cost? It all takes a bit too long, right?
The diagnosis vestibular migraines that the doctor in Antwerp gave was a satisfied feeling. How stupid that may sound because it is an awful diagnose. In addition, it is horrible that I now hope that the scan that they perform in America shows brain damage. Who is hoping for that? It would explain to me everything but even if it is not, this blog will still stand as a rock. In my view, the internist has failed big time.