“Aren’t you ashamed to be at work?” – Maarit gets to hear such comments because of her illness – 2024-03-03 21:51:00

Maarit Matjussi, 40, suffers from a hereditary movement disorder, essential tremor. The disease causes tremors in Matjuss’s head, hands, feet and vocal cords. Due to the disease, his balance is also weak.

For Matjuss, an additional challenge in life is the functional disorder of the left limb pair and migraines. Sometimes he feels so bad that he has to go to the bathroom to throw up because of the malaise.

– That practically happens every week. At that time, I simply can’t stand up when the nausea comes over me.

Although there are many challenges in life, Matjussi looks at life positively. He also wants to encourage others and pass on knowledge as an experienced member of the Association of Movement Disorders.

– Whatever the illness or adversity, you must not give up. Information about various diseases is increasing all the time, and that, in turn, gives the opportunity for new treatment methods.

– You shouldn’t stay alone, peer support is an important help. There is also no need to be ashamed of the symptoms of the disease, be it tremors or anything else.

Matjussi also makes a wish.

– Some people judge others based on their appearance without knowing their backgrounds. I hope that every individual is treated as a human being, because I don’t think anyone has the right to take a stand on another person’s appearance or characteristics in a nasty way.

The disease started with hand tremors

Matjuss’s symptoms started when he was nine years old. At that time, his right hand began to tremble, and writing became more difficult.

– The pen no longer stayed in my hand like before, it caused my handwriting to deteriorate. My teacher told me to tidy up my handwriting, which is why I started writing more slowly and shortening the words.

Matjussi and his family were not too worried about the situation, because others in the immediate family also had tremors.

– For example, my grandmother had bad tremors. As a child, I often carried a cup of coffee to him because of that. When I had tremors, I felt it as something familiar.

Towards a diagnosis

Matjussi was not bullied at school because of the tremors. He was still an eye candy for other reasons.

– I was bullied at school. The reason for that was that I was the biggest girl in my class. Especially a few boys took me for granted.

– I still knew how to say back, I didn’t seem to feel bad about the bullying. The bullying still had a strong effect on my self-esteem, which was already being tested due to the illness. I often cry and wonder why I am the way I am.

At the end of middle school, some of the bullies showed good manners.

– One of them came to apologize genuinely, after that a few others did as well. However, some didn’t apologize and surely never will, but that’s their business.

The tremor showed no signs of weakening over time, on the contrary, the situation became more difficult.

– The function of the right hand deteriorated, and writing became slower and slower. A slight tremor also appeared in the left hand.

Matjussi finally received a diagnosis for his symptoms at the age of sixteen.

– The doctor did tests on me, after which he concluded that the underlying cause of the symptoms was essential tremor. It is a hereditary disease that I had received from previous generations.

– Even though I knew to wait for the diagnosis, I was still angry. The doctor’s words especially raised the anger: “Try to cope with the disease.” At an older age, I understood that he surely couldn’t have said anything else.

Education and work

The doctor’s words stayed in Matjussi’s memory for life.

– I thought in various matters that I would be fine, I have moved forward with that principle.

Matjuss was given the first drug trials when he was in his early twenties.

– A neurologist examined my migraines. He stated at the time that since I also have essential tremor, a certain medication could be tried. However, the medicine I tried did not suit me.

He continued to train as a waiter. After transitioning to working life, challenging situations arose due to tremors.

– I worked in the field for a couple of years. However, my condition worsened to such an extent that I had to change fields. For example, making drinks turned out to be very challenging. I also couldn’t carry the dishes like I used to, and sometimes they would drip on the floor.

Customers also gave feedback.

– A few customers asked if I had a bad hangover. Some people’s thoughts were evident from their grumpy expressions. I said sorry once, and told about my illness. It made things change immediately.

An important encouragement for Maarit Matjuss is the Kaisla dog. Interviewee’s album

Awful moments

Matjussi returned to his studies, he completed a salesman’s professional qualification. After that, working life beckoned in various shops.

– I enjoyed working with people, the work felt like my own and meaningful.

However, the symptoms of the disease gradually worsened.

– Hand tremors and weakness worsened, I also became more clumsy and tired. After a while, a few customers remarked on my head bobbing, so that was increasing as well.

He visited the doctor a few times, then the previous diagnosis was mostly just confirmed.

– I was also given a new drug trial. However, the medicine caused me to have a decreased level of consciousness and fatigue, it did not suit me.

Although Matjussi enjoyed his work, he had to experience increasingly nasty comments and face unpleasant situations.

– I was told, for example, that the girl must have had a rough night when she has such a severe hangover. Sometimes I was suspected of being drunk and asked if I wasn’t ashamed to be at work. I told some clients directly that I have a hereditary disease, I can’t help it.

– Such situations made me feel angry and ashamed towards other people as well as myself. It was also very frustrating to go through the same things over and over again.

To a new life

In 2018, Matjuss was also diagnosed with a functional disorder of the left pair of limbs, and he had to give up work.

– I got depressed. I felt like I couldn’t stand any more adversity. I felt losing my job really hard because it felt like I was losing my dignity.

However, light began to emerge as the research progressed.

– It turned out that the functional disorder is not caused by a brain tumor, and it is not a fatal disease. This knowledge gave additional strength.

He had also experienced a divorce less than two years earlier. A new man entered life at just the right time.

– I met my husband in 2018 while struggling with deep thoughts. He played a big role in turning the direction of my life into a more positive one.

Matjuss’s husband also had to restrain his wife’s desire to do things herself, despite the tremors and other symptoms. One unfortunate situation happened at the kitchen stove.

– I boiled carrots in hot water. However, the pot fell on me, and the water caused burns. After that, my husband gave me a little homework for the right reason, he reminded me that I should ask for help if needed.

Matjussi draws strength for her life from her husband, friends, peer support, pets and her duties as an experienced operator.

– It is important to be able to share the good and difficult things in life with others. For example, one of my good friends told me that if my hands weren’t shaking, I wouldn’t be me. I think it’s well stated, those words were liberating.

More information and help: www.essentialinenvapina.fi