My name is Sophia Jacobsson and I’m 42 years old, and I live in Sweden. I am disabled by several rare and debilitating auditory and neurological conditions: noxacusis, loudness hyperacusis, multi-tonal reactive tinnitus, musical ear syndrome (MES), tonic tensor tympani syndrome (TTTS), and eustachian tube dysfunction (ETD).
Before falling ill, I led a fulfilling and creative life. I loved spending time outdoors, and being in nature gave me inner peace.
I cherished the simple and meaningful things in life: spending time with my beloved daughter, doing crafts like crocheting and macramé, I loved growing things and watching things come alive there’s something fascinating about it. I had a dream of a little place in the countryside, having a garden full of edible things I’ve grown for myself. I lived a holistic life where food was my medicine. I enjoyed music since my teenage years, it has been a hobby that has been given me so much joy and I met so many interesting people throughout the years because of my love of music. I also loved vintage clothes and the way I could express myself through how I dressed from early years. Creativity has always been a source of inner peace and joy for me. I studied at art and fashion design schools and worked for over 12 years as a fashion designer—a profession I truly loved and miss every day.
Sixteen years ago, at the age of 26, I was diagnosed with ME/CFS, a neurological condition that severely impacted my health for years. Despite the hardship for many years, I eventually experienced significant recovery and was able to enjoy life and live somewhat normally again. I never imagined that illness would once again take everything from me—and in a way more brutal than I could have ever imagined.
In the early fall of 2023, after years of enduring physical abuse and extreme stress, I suffered a brutal onset of PTSD. The combination of trauma, anxiety, and sleep deprivation triggered the beginning of an even much worse nightmare. So the painful journey of my auditory illnesses started.
Suddenly one day, the world around me began to sound unbearably loud. I had to reduce the volume on my TV and work computer. Everyday sounds became overwhelming—cars sounded like jet engines, my cat like a roaring tiger, and running water like Niagara Falls. Even the wind became unbearably loud. I began researching my symptoms and discovered that I was experiencing loudness hyperacusis. I had to hide inside from the sounds outside that in my head sounded like a warzone.
Shortly after, I developed severe tinnitus. In both ears and head. The volume and intensity were catastrophic. I sought help from ENT specialists and my general practitioner, but no one had answers. I was prescribed medications that, in hindsight, worsened my already fragile auditory system.
These months are a blur. My condition deteriorated rapidly while I desperately searched for help from healthcare providers who had little understanding or knowledge of these rare conditions. My tinnitus became unrelenting, preventing me from sleeping or thinking clearly. I had to get sickleave from my job that I love, that daily gave me so much joy. I began to wonder how I could possibly live like this in the future….will I ever get any help or will this nightmare continue forever?
As if things couldn’t worsen, I soon developed multiple, simultaneous tinnitus tones—ranging from high-pitched beeping to machine-gun-like smattering, and train brake screeches. It also became reactive, meaning nothing can mask it, tinnitus itself always gets louder than the surroundings.
Then came a new horror: burning, stabbing pain in my ear canals. It felt as if acid had been poured inside, a constant sensation of open wounds. This pain spread to my face, mouth, gums, tongue, and teeth, making even eating painful. I got all this pain from sounds. I had developed the most severe kind of Noxacusis, which is one of the most painful and disabling illnesses there is. And there is, as I see it, no understanding at all for this illness that has totally destroyed my life. The fear and isolation deepened.
As if all above wasn’t enough, then came the another totally unbearable and frightening symptom: Musical Ear Syndrome. Unlike typical tinnitus, MES involves hearing actual songs or melodies that are not present in the environment. It is usually seen in elderly individuals with hearing loss—statistically, I should never have developed this. Yet here I am. I was terrified to even mention it to doctors, knowing how poorly understood these conditions are. I felt abandoned and alone, left to cope with these cruel, inhumane illnesses with no real support.
As of April 2025, I have been housebound since the fall of 2023. I am unable to perform even the most basic tasks—cooking, cleaning, or any activity involving sound which is pretty much everything you do. Everything is too loud and painful. I am trapped in my apartment because my illnesses that makes me “allergic” to sounds. My parents help as much as they can, but they live far away. This life is not possible without proper healthcare, I need specialists to help me and I cry out for help but without any response.
Every day since I got sick, I reach out for help. All I want is to get my life back, so I can be the mom I used to be, see friends again, work…have a life where I don’t suffer so tremendously every second. My head and ears are filled with tormenting sounds, and I live with constant, severe nerve pain. I no longer know how to make it through the days.
Despite countless efforts, I have received no effective treatment and no meaningful support. Referrals to hospitals are being denied and I no longer know how to proceed without any kind of relief.
I am sharing my story in the hope that it will raise awareness of these invisible, often very misunderstood conditions—and to advocate for those like me who have been left behind by the medical system. I want healthcare to understand how much physically and mentally pain these illnesses leaves us in. These illnesses literally take everything away from me, and from many others around the world. We need symptomatic relief and help- now. Thanks for reading my story,
Sincerely Sophia Jacobsson
