As Jacquelyne Froeber tells
I moved to Manhattan in my early 20s to get a job in television production. I worked as a producer for ABC News and Showtime shows and loved the quick pace of the job and in the city. I was constantly on the move between work and friends and there was never a lack of funny things to do.
But when I was 26.
I started joint and muscle pain that I couldn’t explain. My fingers and toes kept tingling – how they fell asleep – but I had problems sleeping and terrible brain fog.
One in the afternoon I felt good enough to go over the Williamsburg Bridge to meet a friend, but after that my whole body felt like she was on fire. My lymph nodes bulge out of my throat and my neck was so sore that I could hardly swallow. I knew something was wrong.
The first health service provider (HCP) I saw ordered a number of tests, but could not find anything that would explain my symptoms. He referred me to various specialists who all said the same thing: we are not sure what is going on with them. There were times when an HCP believed that we were close to a diagnosis, but it was never checked out.
Months after the rotation of transfers, I had an appointment with a well -known neurologist and crossed my fingers that he had answers.
“Do you have a friend?” he asked.
I took a break. No question that I expected. “Not now,” I said.
“All of their symptoms would get much better if they had a friend,” he said. “Women their age have to have friends.”
I was shocked and uncomfortably giggled. I thought he made a bad joke on the way to diagnosis. But it turned out that a friend was his true solution.
I visibly trembled the appointment. I wondered how a woman looking for medical help for an unknown state of health could be treated so badly. Years later I would find out that women are not taken seriously by medical evaluators – a pattern that extends far beyond a bad doctor.
Unfortunately, Dr. Friend not the last HCP that didn’t take me seriously, and my symptoms only got worse. I finally had to terminate my job to see HCPs full -time.
Around the ninth misdiagnosis, I realized that if I didn’t find out what was going on with me, nobody would do. For months I have been spending a bit of energy that I had handed over about information on the Internet and in medical magazines.
One day I read about post -sexual discomfort (PEM) when symptoms such as pain, tiredness and brain fog flare up for physical, mental or emotional activity. My mind went immediately at the time when I crossed the Williamsburg bridge and I cried. I knew I had my diagnosis. PEM is a characteristic of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A complex, strongly weakening physiological disease that can affect the entire body.
There were two specialists in Manhattan and both diagnosed me with the disease. I was relieved to stop the carousel of random HCPs, but destroyed on the ground to find out that there were no treatments or medication for me/CFS approved by the FDA.
It was also extremely frustrating to finally have a diagnosis, but when people looked up, they would only see “chronic fatigue syndrome” and thought I was just tired. I sent people medical articles and tried to explain the wide range of symptoms – electrical shocks in my arms, heavy brain fog that felt like my mind was closed – but there were no resources that describe exactly what happened or how complex the condition really is.
In 2016 I didn’t have a massive “crash” or the symptoms long after my official diagnosis. My lymph nodes and my throat were swollen and painful, and my legs stopped working properly how they had turned into jell-o.
I knew something happened and it wasn’t good. I greeted the first taxi I saw outside of my apartment and went straight to the house of my parents in Connecticut.
I had developed very heavy ME/CFS and could no longer perform the simplest movements. I couldn’t wiggle my toes or bend my fingers. Even the suction movement of a straw was a fight, and the smallest sip of a smoothie took everything out of me. My parents hired caretakers to help me with basic tasks, how to brush my teeth and turn my body so that I couldn’t get bed wounds.
The worst thing was that I lost the ability to speak. I was caught in my own body without communicating – a hell that I would not like anyone to the worst enemy. I suffered every day every day, but losing my voice was torture.
Since no treatments approved by the FDA were available, I received numerous off-label medication to see if anything contributed to improving my condition. I knew some people with me/CFS improvements with off-label treatments-but not everyone does it.
Fortunately, after 2½ years in which I was complete, I showed improvements. I gradually started to speak again and went to simple quality of life such as the use of an iPad.
And after I finally got my voice back, I knew that I wanted to use it to sharpen this poorly understood condition. In March 2024 I started #notjustatigue – an educational resource for everyone, from government officials to friends and family, to learn something about me/CFS and the stigma. For decades of misinformation, unfortunately, a tribute have asked for how we see this weak chronic disease. It was not long ago – 2017 – that the centers for the control and prevention of diseases recommended training and cognitive behavioral therapy as treatments for ME/CFS. You have put down the recommendation since then, but no progress in relation to treatment options has been made.
In recent times, #NOTOFFATIGUE has worked with researchers to publish the Invisible Illness Report – the first comprehensive survey in which the economic effects of ME/CFS were examined on individuals and families. The survey showed what I suspected: Almost all people (94%) with me/CFS saw some interruptions in their professional life. And 1 of 4 said her diagnosis forced her to completely leave the workforce.
People with me/CFS who were able to maintain only 57% of their income from illness on average. Women were particularly hard hit and only had 49% of their previous income compared to 63% in men. The most meaningful, almost half of the women reported that it had not been taken seriously compared to a third of the men.
Due to these tangible wave effects of ME/CFS, I met with employees of the congress in order to stand up for state financing for clinical studies. As a person who has been swimming because of the illness for nine years, I know that hope will keep you running and what we really need are clinical studies. We have to know the people who have improved why they have improved and whether other people can improve in the same way. There are millions of people who live with me/CFS. Everyone can get it at any time, and women develop the disease than men three times more often.
It has been almost a decade since my diagnosis and I have been ready beyond progress. It is frustrating to believe that my life might be different if the government had invested in the search for treatments for the disease. But my focus is now on day to day and sticks to the future. I hope that the doctors in the medical faculty are completely trained through me/CFS and that there will be specialists and medical centers and treatment options for people who live with the disease. It is what everyone earns with me/CFS.
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