My life in words

The year is 1999. I am seven years old when I first get to the children's psychiatric hospital; tormented by an intense fear of vomiting. I state that I have recurring trouble with my stomach, consisting of pains and daily diarrhea. A girl at the mere age of seven, who refuses to attend school, who is constantly crying, and screaming in pure agony.

This is where my story starts, my story that has escalated and become more severe as the years have gone by. Today I am 28 years old, and know now that I suffer from emetophobia; an extreme fear of vomiting, combined with panic disorder. I have also been diagnosed with the chronic inflammatory bowel disease ulcerative colitis, as well as IBS, both of which affect my daily life to the point where I at all times require availability to a bathroom, but also cramps so severe that I am often forced into fetal position in bed. My physical sickness is closely connected to my emetophobia, because I need closeness to a toilet, whilst not being capable of using a public restroom due to my fear of infection. I also need to control my food intake; if I am supposed to meet someone or leave my home for a meeting or such, I cannot eat for hours before. Eating is closely followed by cramps, and short thereafter I am forced to seek a bathroom, which as previously stated is incompatible with my emetophobia. This means that I have to refrain from food intake, although my sickness requires that I should eat small meals close together, preferably every third hour. If I were to be in a situation where I would have to be at work eight hours a day, that would result in me not being able to eat during that time. In addition to the malnutrition and lacking energy, this would also mean that my pains would worsen upon me finally getting home and being able to eat, because I would have gone too long without eating. This could also possibly lead to my health to deteriorate over time, because of my need for regulated food timing. In conclusion, my daily life is affected both by my mental and my physical health.

It has been 21 years since I became sick, and my life today is limited in every possible way. I am scared to leave my flat, since leaving my safe zone is associated with a risk of getting the stomach flu. Touching the door handle to the street door, or opening the door to the trash room is associated with intense anxiety, and is something I cannot do without using gloves, or frantically wash my hands straight after. All contact with other people, direct or indirect, is extremely tough and causes panic attacks because of the fear of getting sick. A task as small as getting groceries, a vital task, often ends in panic attacks and having to go home. Everything I touch is potential infection, because the things I touch could have been in contact with someone sick, this requires constant analysis of risk. Everytime I find myself in an environment with other people, anxiety puts me out. I analyse everyone around me, trying to identify any possible sickness. Does someone look pale, is anyone holding their stomach, or their mouth? I listen for gags, or eavesdrop on conversations to try and hear if someone mentions stomach ache or nausea. I keep my distance from children, as they are more prone to throw up without warning. If I detect any kind of danger, I flee. Someone coughing a bit too intensely or a child being a bit too whiny is enough for me to panic.

So then what happens when someone close to me gets sick? I get hysteric. I grew up in a big family, with two parents and four younger siblings, stomach flu unfortunately is inevitable. As a child myself I couldn’t phrase my fear, but every night I screamed in agony, for the fear of throwing up. Once someone in the house got sick, chaos erupted. I screamed, fought, refused to sleep, eat, and so forth. When I was in my teens, up until I moved out, I gained understanding of how the sickness spreads, and from there I developed a behaviour of flight. I have countless memories of me climbing through my window, wearing only a t-shirt and underwear despite it being freezing and deep snow outside. I would run through the snow, cutting up wounds on my bare legs. I would then move into the 4 square meter big storehouse in our yard. I lived in that storehouse for weeks, despite not being able to tend to my hygiene or sleep straight. My fear was intense up to the point where I would rather fulfill my needs outside, behind a bush, or knock on the door to one of my neighbours. I could barely eat, nor sleep.

When I moved out, I was convinced that I would get better, but I didn’t. As soon as someone as much as mentions stomach ache or nausea I flee again. I then stay at home with tormenting anxiety for 48 hours so wait out the incubation time. I dare not to eat, not to sleep. All I can do is to lie apathetic in bed, counting down time until I get sick. If it is someone I haven’t met, but need to meet, like if my psychologist were to get sick I would refuse to meet that person for two weeks, given that that is how long the virus can survive on surfaces. I am indifferent to if the person claims to be affected by food poisoning or hangover, in my world it is all the stomach flu, and I will be gone. Now imagine the scenario of this happening in a workplace, that a coworker gets sick, or even just has a sick child. I wouldn’t be able to come to work for the next couple of weeks.

Other things in my day to day life being affected is food; I can’t buy groceries that are not pre-packaged, such as vegetables or candy. For me this is associated with stomach flu in the sense that people could have thrown up close to the goods, meaning drips of the virus would have coated the food. The fear of getting sick is too extreme. I can’t eat food that someone else has prepared, and when I cook it myself there are several types of food that I avoid; meat, chicken, reheated rice, or vegetables.

Additional parts of my life being affected is me not being able to have people visiting in my flat, because they would risk bringing the virus in. I also have great difficulty visiting others, because of the fear of them having the virus there, but also the fear of me getting sick somewhere but my home. Meeting someone in public is difficult because of the fear of catching the virus but also me throwing up there. Riding public transport is impossible for me as well, also because of the risk of catching the virus, but also the possibility of me throwing up, or getting diarrhea on the bus or the train. I can neither go longer distances with my car, because what if I get sick being far away from home? This means situations like vacations are ruled out. An additional problem is sleeping away from home, which is something I have not been able to do for years. In this context it is once again related to the fear of getting sick away from home, but I also can’t manage having someone sleep in my home, given the risk of the guest becoming sick. This has put a toll on my relationship, because my boyfriend and I can’t sleep together. Being that we are in a long-distance relationship, this is clearly problematic. I would be lying if I said that this didn’t affect our relationship, cause it would have affected anyone.

A factor that makes my wellbeing so terribly complex, is the closeness of my panic disorder and my phobia. As previously mentioned, my anxiety is triggered when I am in an environment where other people are, but it is not limited to external factors. Panic attacks usually occur out of the blue, and for me personally my symptoms closely resemble stomach flu. I suppose all of you know how the stomach flu feels? I get nauseous, cold sweats, and dizziness. I start to gag, and I have to rush to a toilet where I will either throw up or poop in pure panic. Because I also am absolutely terrified of throwing up away from home, I immediately want to separate myself from the situation and or place. This means that I am constantly forced to disrupt activities that I am trying to see through; going food shopping, working out, meeting friends, or attending medical appointments.

The extent of my limitations in life are severe enough that I struggle seeing how I could possibly maintain a job. I am unable to work 100% regardless of tasks or adjustments, as a direct result of my limitations covering all aspects of my life. If I am unable to see through a doctor's appointment, or go to the store five minutes away from my home to buy milk, how am I expected to go to work eight hours a day and perform adequately?

For me, It is first and foremost about achieving a functioning everyday, with help from psychiatry and medication. My goal is to succeed with simpler tasks, such as seeing my therapist once a week, or attend an important meeting. I would like to go from there, and build my work ability at a work training, where I am expected to show up once a week, for a few hours, to then move forward.

But here I am, discharged from the Swedish social insurance agency, without my lifeline, because I have been deemed as healthy. Deemed healthy despite me not being able to complete the 6 hours a week I have been appointed to try this fall, despite me according to the employment center as well as medical professionals being completely unable to have a job of any kind.

For 21 years, I have been in therapy for my phobia, and for 21 years I have fought till the last drop of blood. I have never been able to maintain school as a healthy individual, nor have I ever been able to work as a healthy individual. Despite this, I am from the first of January bound to show my availability for the work market, meaning that I have to apply for every and any job to support myself.

Is this how it is supposed to be? Should an individual, whom has been sick for their entire life, that can’t do 6 hours of work per week, suddenly be expected to manage 40 hours a week? No build no, no room for recovery. All of a sudden I am deemed healthy, after 8 years of sickness compensation, although every authority in my life says otherwise. But sure, he Swedish social insurance agency knows best? I am ashamed for the way our society treats sick people, and I am ashamed that this is the way that things go.