Ever since I was 11, I have been in and out of hospitals. The last time I was admitted to a hospital was back in February. I was there for eight days and no one, not even my children, came to visit me. It has always been this way since I was a teenager, and I have gotten used to it.
When I was younger, I used to take the public bus after school to go for my doctor’s appointment. Even back then, no one accompanied me, and I had to go all by myself.
My mother was a factory worker who spent most her life working to put food on the table. She was a single mum raising three children ever since my dad passed away when I was 12.
Growing up with psoriasis has always been challenging. I was always absent from school and it really affected my studies. I was actually a very good student, but my condition made it difficult for me to keep up. I was in the hospital so much that I had to sit for my exam in the hospital this one time. After completing my secondary school, I decided to start working, as I did not have anyone to support me to further my studies.
When I started my first job, I decided to enroll in night school. I had a packed schedule: working as an administrative clerk in the morning, studying in the afternoon, and attending classes at night. That was my life for three years. After I got my diploma in accounting, I went on to work at a company and my boss does not mind me having this medical condition.
All of these happened while I was dealing with my condition of erythrodermic psoriasis. It’s a very aggressive inflammatory form of psoriasis. Besides having severe skin redness and excessive skin shedding, I had generalized pustular psoriasis. The blisters all over my body caused severe pain, and the flare ups caused my body temperature to fluctuate uncontrollably. Erythrodermic psoriasis also occasionally causes joint pain and swelling, especially around my ankles.
At the height of all it, I developed lesions on both of my calves, that grew to the size of a tennis ball and a golf ball. The lesions would bleed without warning, and it would produce a discharge that had a really strong and unpleasant smell. This lasted for about a decade, where I couldn’t walk properly, and I was often bedridden for up to two weeks at the hospital whenever my skin acted up.
After years of medication, treatments and hospital visits, the specialists managed to remove the nasty lumps on my legs and was able to keep my condition under control. I had to undergo countless sessions of cryosurgery, which were unbearably painful.
My ankles still swell now and then, and it affects my mobility. My fingers are also deformed due to psoriasis, and I cannot write as well anymore.
Currently, I still go for my regular doctor visits, while working and raising my two children. My condition has definitely affected the relationship with my family as well. My husband and I don’t sleep in the same bed anymore. I guess it’s hard to be intimate with someone when the bedsheet is always covered with dead skin.
My children and I have a complicated relationship. My son does not like me sending him to school, and he always tells me to show up late for parents-teachers day after all the other children have gone home. My daughter does not like it when I go into her room because my skin sheds everywhere.
It’s hard, but what can I do? They are embarrassed of me because I’m not like the other mums - I have obvious abnormalities and my skin looks red like a lobster. I wish I could change things, but I can’t. I can only do my best and hope that it’s enough for everyone.
Sometimes my colleagues would realize that I am not doing so well and ask me what’s wrong. But I choose not to talk too much about it as I don’t like using psoriasis as an excuse for my performance at work. That’s why I always force it upon myself to work hard, unless there are times where I am so sick that I can’t get out of my bed.
Life has always been an uphill battle ever since I know it. Sometimes, I wonder how I managed to get through it all these years. There are always people telling me that I’m very strong, but I guess I didn’t have a choice, I had to be strong in order to stay alive. You just have to keep going and live your life to the fullest, continue seeking the right treatments and do everything that you can in order to stay sane and healthy.
CTX.PsO.02/ MY2011038499
Jane
