Your Invisible Illness Is Valid
Sam Escobar

Sickness has always been around. At the age of 3 my whole body, except my face, got burned in an accident with boiling water. Subsequently, I had to see a doctor on a daily base during some weeks in order for him to take off my skin again and again. All this did not leave any visible marks on my body later. An invisible mark, probably, is that I keep forgetting about my first “illness”. Since I was 4 years old my skin suffered from a kind of neurodermitis for several years. I had to move twice, leaving my beloved grandparents. It took me a while to get over it but at the age of 7 I found some friends to play with. Yet I could not share all their activities due to shortness of breath.

Around that time my mum got bad asthma, she could neither breath, nor play with me, she could not go out for activities, and depended on loads of medicine. When my dad was away for work (which happend quite often) she would come to my room at night, holding a phone and an ambulance number in her hand. So I called and we drove to hospital. As she could not speak at this moments due to shortage of breath, I remember myself tinkering a paper she only needed to point on in case she wanted me to get her medicine, or to call a doctor or the ambulance. Myself, I started to suffer from heavy head ache attacks for which I was given strong painkillers, only available on prescription. I learned to always take two of them. Whenever I went swimming –the only sporting activity I liked and could do in spite of shortage of respiratory distress– I suffered from ear infections. Antibiotics were administered to me an innumerable amount of times. Later a doctor told me this might have led to asthma. Repeated appendix problems ended with it being removed in hospital under general anesthesia which caused heavy vomiting attacks that lasted 2 days. Nobody could see how my stomach was suffering, and that I did not malinger.

We moved again because of my mum’s asthma, that is to say I lost school friends I did not want to leave behind. That also meant to live alone with my mum in a small middle-class village, a strange thing when you are used to move around autonomously in town. Being dissed in new school, as I could not do much sports, I tried to reach the image of a beautiful woman and stopped to eat more then dry bread and apples for 4 month. I quit this practice when noticing that I would never achieve this image of being thin. I went back to the place of my childhood once, and experienced my first sexual encounter — as an assault. I was seriously affected by being assaulted and abandoned by a person I had have confidence in when looking for love. I was 14 years old. I, for my part, felt guilty. Two years later I was finally diagnosed with asthma after years of blood taste in my mouth and massive breathlessness in sport’s class. I followed the doctors’ advices and took medicine for 3 years, before I started to question all this. I stopped. I felt quite ok. However, during the following 6 years I had annual vomiting attacks that would not stop until they injected my completely dried out body with water and medicine at the hospital.

In the meantime, at the age of 17, I did not know where to go to with all my anger at not being seen, as well as with the anger at rich people ignoring everyones pain in favor of their own happiness. At that moment everybody around me was dealing with too much shit. I turned anger into pain, drank way too much alcohol, cut myself, confronted more sexual assaults. Then, one day, a friend suffering from bulimia and alcoholism died of heart attack. I was 19 years old. Now I saw me and all of my friends around me compensating pain caused by external circumstances with different kinds of self-destructive behavior (such as 2 bottles of rum a day, deep skin cuts, unwanted pregnancies, heroin consumption, maintining physically, emotionally, and sexually abusive relationships, not being good friends but tough punks…), and I decided: stop this now or you will get lost forever. I stopped to drink alcohol for more than 4 years. “Craziness” turned from one kind (self-destruction) into another (anxiety in both crowded and silent places) into the next (re-appearing traumata)… I attended a lot of punk shows during that time. It was super smoky everywhere but my asthma did not bother me. I found access to anarchist projects, started my own with a group of people. I was the only woman for a long time, until I could not bear an emerging citywide debate on sexual assault in midst this all men space. I lived through situations such as one where a guy came with a beer bottle in his hand, wanting to force me to discuss this topic with him. I collapsed. The following 2 years I was haunted by those memories of sexual assault that I had long tucked away. Back then, not one single man of my so beloved political project looked after me.

Through these experiences of sickness, as well as of assaults and traumas, I learned that there is nobody treading your path with you. You need to make it on your own. And I made it. In a way my last years were mainly dominated by physical suffering, rather than by the pain of trauma. It has been differently exhausting, the temporal distinction between being well and being sick is clearer. Anyway, I feel more surrendered, as if I had lost control, my rationalizing capacity does no longer seem to be that great and helpful resource. My so far undiagnosed pain started in my mid 20s. It began with a kind of tendinitis in my hands and elbows. Pain then moved to my shoulders, my back, and finally to my chest. I had to give up typing, cycling, carrying things, using my force (which I had just learned to do, and which made me feel strong and alive). As my body looks quite strong and this horrible pain was invisible, people would not believe that I could not assist with carrying crates, chairs, a tray with cups, or even just a one liter coffeepot when we organized whatever event. Nor did they believe that there was a serious reason for which I could not help out when people moved house. Sometimes I could not even wash my hair, I needed to ask somebody to cut a slice of bread, or to open the espresso maker for me. I cannot wear any bra or bikini (as I love water in summer I do wear it but it causes pain). I had to give up traveling like before: hitchhiking and carrying a backpack. The most likely diagnose is a connective tissue disease.

All the more I learn about my body I notice that pain gets worse when it is cold (in the region I live it is cold for more than 4–5 months a year), and that it is connected to stress. I somehow learned to deal with it. Last summer I was nearly free of pain, and traveled with my backpack again for the first time! Nevertheless, my immune system seems to be destroyed. The last years I have been sick nearly all winter. Visible and quite conventional illnesses, such as a simple cold, tie me up on my sofa for at least one week, and then it takes me 3–6 weeks to wholly recover. As outwards it seems to be “just a normal cold”, people around me do not recognize that I am really unable to move, cook or care for myself. This is so isolating. What makes things worse is the fact that I cannot often go to bars or parties anymore, as nearly all rooms in town are smoking rooms (and people –even close friends– are not willing to organize our own events as non-smoking events). I was diagnosed with a cadmium allergy — main ingredient in tobacco. Unfortunately, my body’s capacity to stand cigaret smoke has changed during the last years, rendering the possibility to be in a smoking room impossible for me. If I do so, going out one night is connected to heavy pain which sometimes lasts for up to 2 weeks. This is also really isolating. And this is the only thing I cannot handle of bearing all this sickness and trauma: anarchist places resisting to make (at least some more) smoke-free events. And yet you can always find signs like “This event should be for everyone. No sexism tolerated. We want everyone to feel comfortable“ all over the place, as well as all places have been easily transformed into vegan places. I get sarcastic, heart-broken but all this won’t help. I can fight for so much but power is not endless.

This winter my pain got worse in November. It was accompanied by vomiting from which it took me 2 weeks to recover. After 9 days marked “only” by pain, and me leaving smoky places, I got a heavy cold which made my asthma worse. Thus, I could not do much for 3 ½ weeks. Pain just got better 2 ½ weeks ago. Now I am stretched down by another cold including even stronger asthma, sinus infections, fever and massive weakness since 3 weeks. But my experience is: everything happens in phases. So I know that during summertime it is going to be better. And I hope that will be soon. I am looking forward to get new energy, to meet friends, to cycle, to do projects, thereby collecting resources for another exhausting time to come.

In the and I always come to the point: Sure I can deal with shit on my own. But I don’t want to! I want to feel part of collective, communal living. Of bearing things together. Of taking care for each other. Of sitting next to each other on the couch if one can’t get up. Of finding solutions together, trying ways out, becoming better in process.

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