A day of pain

by Patrícia Soares.

Human Resources and Social ActivistMORHAN, UBM e Conselho Estadual de Saúde da Bahia

February 2017, I was on an ordinary day, with nothing unusual, taking care of my house, participating in my daily activities and as it was getting dark, I started to feel something strange. I felt that my body was hot, but not like a fever, it was as if I was really burning. I decided to take a cold shower to see if I felt better and when I took off my clothes I realized that my body was covered with reddish spots.

Although I have felt sick many times before, this time I found it different, but I wasn't too worried because, apparently, it could be just another allergic condition. I went to bed a little earlier, but sleep didn't come, I was sweating, I felt cold, I had a hard time sleeping, but, finally, I fell asleep. The next morning when I woke up, I didn't even have time to understand what happened. I couldn't move, everything in me was pain, but I had to get up, I had to ask for help.

When I finally managed to get up, I was in so much pain that I got a little dizzy. I dragged myself to the bathroom and what I saw when I looked in the mirror was not me. What I saw were purplish blisters and reddish spots all over, painful lumps and a mixture of pain and burning that I don't know how to put into words, I can only say it was scary, it was impossible not to panic.

I had been through many reaction episodes before, but never like this. I managed to talk to my doctor, but she was on vacation and I was panicking. I couldn't even explain what happened clearly, but because she had been with me for a long time, she immediately replied to me prescribing medication and seeing if her colleagues would admit me to the hospital.

I refused to be hospitalized, because I have had many bad experiences in hospitals. Many blisters in my body and face had ruptured, to my despair, they turned into wounds and I was afraid of contracting a hospital infection. I started to take care of myself at home, changing my dressings, keeping everything very clean and disinfected. Many home made ‘remedies’, to ease the inflammation.

However, nothing but patience and a lot of hydration had much effect, now it was just a matter of recovering little by little. A slow process, that seemed like it would never succeed, that was much more about self-acceptance than anything else. The hardest thing is not having anything to do, not knowing where to go, and that there is nothing that will make you forget those moments or remember them without getting emotional.

From the middle of February to the end of March, I could only see wounds, but not only wounds of the skin, but also of the soul. That pain and desire for death when our self-esteem is broken and possibly will never be fully restored, when we can't recognize ourselves, that pain that only those who have been through it can understand. That pain of prejudice, the evil jokes, the people distancing and powerlessness faced with the situation.

These were difficult times, almost without hope or high expectations, where I had to work hard not to fall apart, I had to believe in the impossible, I had to remake myself. Necrotizing erythema nodosum? Lucio’s phenomenon?* Maybe I will never know. Maybe I will never forget this moment, maybe I will never fully get over it, but if I made it this far, there is no reason to give up now.

I share one of the worst days of my personal life experiencing reactions, not to make you feel sorry, but so that those who have been or are going through the same situation know that you are not alone, that it is possible to come out of this phase of suffering and see that we are and can be much more than a label or a disease. The scars are part of our story, but they do not define who we are and today I can say that the worst is over, that it will remain only as a past memory. Today I can sleep peacefully, without fear of what awaits me at dawn.

*Necrotizing erythema nodusum and Lucio’s phenomenon are type 2 Hansen’s disease reaction (or leprosy reaction).

IH Editorial Board :

Álvaro Nunes Larangeira and Patrícia D. Deps .


Amanda Lima Mutz and Patrícia D. Deps.