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The job interview was going great. The atmosphere was such that we could already sign the contract. And then the question was asked: what is this disease? Multiple sclerosis. In an instant, everything changed, we had nothing to talk about anymore.
Employee, not sick
– I was eliminated by the disease – says 33-year-old Alicja. As with most MS patients, she was not diagnosed immediately. “I was sixteen when a tick bit me,” she says. – I had a large erythema, so Lyme disease was suspected. A year later, the doctors were sure: Lyme disease and MS. Nothing changed at first. If I felt worse, I went to the hospital for two weeks and continued my life. I finished three fields of study and gave birth to a child.
Multiple sclerosis (MS) is an incurable and chronic disease of the central nervous system. Most often it takes the form of relapses and remissions, i.e. complete or partial resolution of symptoms between successive relapses. Patients most often struggle with progressive or sudden loss of fitness, including difficulties in performing the simplest activities, disturbances in motor and sensory functions.
According to research conducted for the needs of the social campaign SM – Fight for yourself, as much as 70 percent. sick people retire within two years of being diagnosed. Every third patient thinks that people with MS who are still working face a negative reaction from the society. At the same time, almost all respondents admit that from the moment they hear the diagnosis, work becomes more important to them than before. Thanks to her, they do not feel like second-class citizens, they are employees, not sick.
The teacher must be perfect
From the windows of her apartment, Alicja can see the school. She worked there for several years. Today she no longer enjoys the sight. “I resigned four years ago,” he explains. – I resigned due to the safety of my children and mine. It became impossible to be in a corridor with more than a hundred small elements after my condition worsened. But I made a reservation that I would like to continue working in a slightly different capacity, for example during individual classes with children.
Alicja’s proposal was not met with interest from the school authorities. – Nobody spoke to me, if only to thank me for my work. And yet every year I received the headmaster’s award for outstanding teaching achievements – says the woman and admits that the conversation with one of the deputy directors also influenced her decision to resign. – I was determined. I loved this job and wanted to stay in it. So I decided to go to a rehabilitation stay in Borne Sulinowo. During the conversation with the deputy director, I said directly that I was going, because that’s where they put on their feet. He looked at me impassively and only asked: How long? I felt like nobody needed garbage. I had seen the expressive eyes of employers on myself before. The teacher has to be perfect, perfect, flawless. I wasn’t like that, so I had to leave.
Unlucky question about the disease
32-year-old Mariusz from Łódź remembers one of his last job interviews. – Everything was going perfectly. The atmosphere was such that we could actually sign the contract. And then the question was asked: What are you sick with? For multiple sclerosis. In an instant, everything changed, we had nothing to talk about anymore. Of course, I didn’t get a job – he says.
He admits that he always informed his future employer about what he was sick of. “I thought it was fair, but I noticed it didn’t make sense,” he says. In his opinion, it is better to present a certificate of disability and count on the fact that the employer is not aware of the indications of individual diseases. – And this is the case in the vast majority of cases – says Mariusz. – Unless you are unlucky and a specific question is asked what the disease is. Then it’s hard, needless to say.
Mariusz has been working as a security guard for eight months. “It’s okay so far,” she says. However, he is aware that the situation may change. – Last year I had serious relapses, I did not function normally for six months. I feel good now, so I don’t have to take the days off.
SM? You can’t see anything
And this is what is the hardest for employers to understand. Sometimes they hear multiple sclerosis and say, Oh, but you’re holding on well, you can’t see anything. In fact, I am in good shape, I move normally, but it will not always be like that. One day I feel great and the next I can’t get out of bed. And they think that we are like someone with a sick spine: he will do everything, but he cannot carry heavy things. They have a hard time understanding that there are days when a person with MS has a problem with everything: speaking, hearing, seeing and moving.
This lack of understanding of the disease often results in dismissal. Even if the employer is not intimidated by the name of the disease, he hires a normal-looking person who may experience an imbalance, slurred speech or two days off per month. – And then a man hears that he is fired because there is a reduction in jobs. What reduction if only I got fired? – Mariusz smiles bitterly, recalling his work in the previous company.
All I don’t want is pity
“I don’t like what I’m doing now,” Marek scowls. – I hang on the handset all day and convince people what a great product our company offers. But when I finally got a job after two years, I was the happiest man in the world. How happy I was when the first payment was made to my account. Not much, but what a difference. The most important thing is that I earned this money myself. Jesus, I was so proud of myself.
The long hours spent on the handset quickly wiped out my pride. The truth is, you get used to it. To the boss who constantly remarks in the style of not too long this break? or are we all here to work? not anymore. – He knows about MS, so I thought he would understand that sometimes I have to get up, take a walk, drink some water – says Marek. Previously, he worked for a dozen or so years in a large company with French capital.
– Restructuring came and I had a choice: either to leave or move to the branch in Warsaw. But daily commuting was not an option, not with my health condition – says Marek, although he admits that the disease was not so visible then. – It’s worse now, I use crutches. I’m thinking of buying a walker that I didn’t even want to hear about, she sighs. In the first company where he worked for so long, he did not mention SM. It wasn’t visible yet, and I didn’t want to arouse pity. It’s something I hate and don’t want even today. Therefore, even when I lose my balance on my way to the car, I face the hood and hear comments that I am drunk, I do not react. I don’t want to explain anything, because I know the truth will only arouse one thing: this terrible sympathy.
– When we talk to the families of patients with multiple sclerosis and ask if they should talk about their disease, we usually hear that they are, because thanks to this they can be helped – says Magdalena Fac, Secretary General of the Polish Society of Multiple Sclerosis. – However, the situation is not as simple and straightforward as it might seem. Sometimes the patient does not want to speak because he is afraid of stigmatization, perceiving him only through the prism of MS, labeling a person who will be treated in a special way. When it comes to the labor market, which is extremely difficult in Poland and in which healthy people also have to fight hard, the doubts as to whether to talk about an illness are even greater.
People with MS who have been looking for a job unsuccessfully for years have no doubts: it is better not to speak.
Tekst: Agnieszka Sadowska-Groza