Coffee Date #15 Receiving Bad News and Medical Gaslighting

Spoiler: After having received the terrifying message that I may have the chronic disease called Multiple Sclerosis, I am happy to say that I don’t have it. This coffee date will be about this experience as well as medical gaslighting. But be warned, this is a long article and quite personal. Baking will only play a minor role. If you don’t feel like it, then read this some other time or not at all. But let’s start from the beginning. On October 24th, I received the following bad news in the form of an MRI report: “A few perventricular T2 hyperintense lesions as a possible indication of multiple sclerosis.” Have you ever heard of MS? Multiple sclerosis is an inflammation of the central nervous system, a chronic, but non-contagious autoimmune disease that is not curable and usually occurs in relapses and usually worsens over time. Even though a lot has obviously been done in recent decades and the disease can be well controlled with medication for many people, it is still not curable. Since this disease affects the nervous system, there are numerous different symptoms. It is not for nothing that it is called the disease of the 1,000 faces (not sure though if this holds true in English as well).

MS usually is only confirmed after running several tests. The MRI is only one important  building block, another is the lumbar puncture, the removal of cerebrospinal fluid from the spine, which is checked for inflammations, etc. Of course my neurologist did not explain this to me when we discussed the findings, but I had to research this myself. When I asked him if he could perform this second important examination, he waved it off. When I asked him for referrals, he could not help me either. So I had to find a clinic myself. Perhaps you can imagine that I was pretty down when I was confronted with this suspicion along with a completely incompetent neurologist who could not help me in any way. Of course I wanted to know whether I had MS or not. The day after I received the MRI results, my husband and I took a day off and drove to Schliersee or Spitzigsee. I had to clear my mind. We drove to a place called Albert-Link-Hütte, they are known for their Kaiserschmarrn (see picture on the right). I just needed nature and fresh air so I wouldn’t be trapped in the same thought spiral again. Since fall is my favorite season anyway, I enjoyed the trip despite everything.

The next day I had finally gathered enough strength to call various clinics. I always was put on hold and first had to tell a machine whether I was insured privately or not. I had to wait 15 minutes or more, only to find out that they did not perform this examination. In some cases they were booked for months in advance. But eventually, I finally found one and was able to have this important examination within two weeks. What sounds so simple, cost me lots of hours on the phone and various emails and sucked so much energy. I wonder how people manage who are not as persistent as I am and are mentally exhausted. They then have to wait for months, which can be critical with MS, great. What a stupid two-class system. I’m sure if I had been privately insured, I wouldn’t have had to wait so long.

For the cerebrospinal fluid examination, I had to be hospitalized, I had to stay for a night. So I baked my favorite cookie (chocolate chip cookie of course) and asked my husband to have delicious chicken soup ready for me when I returned. During the two-week waiting period, I stress-baked, we had cute little gingerbread houses, even though Halloween was still an event in the future, but I didn’t care. Then I made pastafrola, the Linzertorte from Uruguay and also brownie cookies, because as a chocoholic I needed a little comfort food. These two weeks were tough, but somehow I got through them. Sport and baking, those two distracted me the most.

I took chocolate chip cookies to the hospital, which was a great idea

And then, I have to give them that, the hospital conducted further examinations in addition to the cerebrospinal fluid examination to rule out MS. I now also know that I do not have Lyme disease. Despite the fact that so many tests were conducted, I had to chase even the doctors in the hospital for some values, but in the end after another three weeks it was finally confirmed, I definitely did not have MS. Of course I am relieved I don’t have another chronic disease besides endometriosis, but it just keeps pissing me off that doctors always blame everything on psychological issues and don’t take me seriously. This is called medical gaslighting. The first neurologist who I had to beg to have an MRI was particularly bad. He had the audacity to read me the report with the suspicion of MS without apologizing for his behavior. During the first appointment, when I begged for the MRI, he said goodbye with the words “You have nothing, the MRI is a waste!” and simultaneously handed me the referral for the MRI. The fact that he had said this while reading me the MS suspicion from the MRI report clearly showed that he had completely forgotten.  Thank you very much.

Even in the hospital where I was examined thoroughly and other neurological diseases ruled out, I was advised to look for psychological help. Just because it’s not neurological doesn’t mean I don’t have anything. I learned that the hard way. Guess what, it took years before my endometriosis was diagnosed. After years of running to doctors, a servere vitamin D deficiency was finally diagnosed, but nothing else. When cysts were discovered that had to be removed surgically by laparoscopy, I was told that they had found a lot of endometriosis in my abdomen. Sure, what a surprise, as if I hadn’t mentioned various symptoms over and over again. If you would like to learn more about endometriosis, check out this article.

Why don’t doctors believe you actually have physical symptoms? Why do they think it is “just” psychological? It makes me extremely angry. One time I left the room of a gynocologist when she was talking to me. Basically in the middle of my appointment. Reason was because she claimed that fatigue/exhaustion is not a symptom of endometriosis. Right. As if there weren’t scientific studies that fatigue is claimed to be even worse than the excruciating pain many women with endometriosis experience. I left because I am tired, tired of having to argue with my doctor. When I got up, she turned pale and asked what was going on. I simply asked her to scratch me off of her list of patients. If she doesn’t believe me and doesn’t know fundamental symptoms of endometriosis, what is the point? Apparently that got to her because she send me a postcard, in which she apologized and asked me to return. Why did I have to use such dramatic measures for her to finally listen?  I didn’t return. I just hope she finally took the time to read up on endometriosis, I mean, she is a gynocologist and this is a sickness many women have, so please make sure you know basic facts.

I sadly have listened to quite a few stories, mainly from women who have experienced medical gaslighting. They weren’t taken seriously. Apparently it doesn’t even matter if the doctor is male or female, I myself experienced gaslighting from a femal doctor. Many times women tell me that they are not brave enough to speak up and leave like I did. Yes, it comes in handy that I don’t care about titles or rank. I have never cared about that. You are definitely not going to earn authority if you have a title. I can just hope that women are bold and strong. Yes, the symptoms are real, yes, they are physical. If a doctor doesn’t believe you, look for another one. I am fortunate enough to be living in a large city so I can choose. Yes, this is going to cost energy, I wish I didn’t have to, but regardless, drop that doctor and look for another. I for sure will have to look for another neurologist, hoping I won’t need one in the near future. Until then I will just sleep and relax the same way as our dog Hazel you see on the featured picture and try to vitalize. Or I may decide to make some Kaiserschmarrn with spiced cherries.

Kaiserschmarrn with cherry compote