Dear Katrine Nielsen:

About your sister, 35, you shared that she “doesn’t look brain damaged, and she’s incredibly smart”. She became ill when she was 11, and at one point, “She was screaming from pain sometimes up to 20 hours a day”. For seven years (11-18), she did not receive the medical help she needed because “no one believed us. They thought she was just a teenager who wanted attention”. At 18 she had a back surgery because she suffered from scoliosis (a condition in which a person’s spine has a sideway curve) and received antibiotics for it. It was then that it was determined that she also suffered from Encephalitis, which is an inflammation of the brain. Five years ago, at 30, she suffered a concussion when falling after she passed out, one of the many times she passed out because of pain. That concussion damaged her brain further and she stayed in the house for two years, following that concussion.

About your father, you shared that (while your sister was screaming from pain up to 20 hours a day, while she often passed out and had a painful back surgery, and even though “she nearly died several times”), he didn’t think it was that bad: “My dad doesn’t think it’s that bad, he’s never been able to realise how bad things were… he thinks everything is fine”.

About your mother, you shared that she has been “the rock in our family.. the one who is always there and keeps us going. Not just emotionally but financially… anytime we need help, she’s there”, that she suffered from “untreated trauma”, that she needed help for 20 years, but refuses to get it, and two days ago, she had “a complete mental breakdown” consisting of “crying all day and refusing to talk”. You were “terrified that she would end up hurting herself”.

About you, 30, you shared that you “have struggled with severe anxiety, depression and stress starting at the age of 7, which is the time your sister became sick with Encephalitis (not diagnosed at the time). In addition to your sister’s illness, you also “experienced bullying, physical and mental abuse, emotional blackmail and gaslighting”. And yet, in spite of all this, you “worked so hard for years and years” and were able to live abroad, in London, having the best job you’ve ever had, amazing colleagues, friends, your own place and some romance.

According to american brain society. org/ brain disorders/ encephalitis, “Up to 60% of all cases of encephalitis go undiagnosed… cases go unreported because symptoms are mild or non-existent.

My thoughts today, your family’s story of misfortune is almost unbelievable, and I am so sorry that this has been your story so far. All this misfortune- your sister being born with scoliosis that later required surgery, suffering from encephalitis as well, which went untreated for years, and which caused brain damage, aggravated by a concussion; your father not being helpful financially or emotionally; your mother having suffered a previous, untreated trauma before the beginning of her older daughter’s health problems, and you suffering not only from your family’s misfortunes but also from “bullying, physical and mental abuse, emotional blackmail, and gaslighting”- I wish this was not your story, and I am sorry that it has been, so far.

Was the bullying, the physical and mental abuse, the emotional blackmail and gaslighting, did you suffer these things in the context of your family, and/ or in other contexts, such as in school, in the neighborhood, in romantic relationships…?

anita