For Ana Nunes, the 36-year-old from Lisbon who works in Information Technology, it has not always been easy to share her experience with psoriasis. After 23 years of struggling with this chronic disease, she decided that it is time to talk about her psoriasis, which is why she created a blog reporting different episodes about the impact of psoriasis on her life, as well as to offer advice to better deal with this condition, Diário de uma guerreira – uma vida com psoríase.
When I was 13, I began to have spots and scaling on my elbows, navel and ears and at that time I was diagnosed with eczema by my family doctor. However, even with topical treatment, the spots never disappeared.
At the age of 22, when I entered the job market and felt under pressure, the spots multiplied all over my body, covering about 90% of my body, from my scalp to arms and legs.
I was on the waiting list for a dermatology appointment for over a year, and when I finally went to my first appointment I was soon diagnosed with psoriasis. The only feedback I received at the time was: “You have psoriasis, I’m really sorry …”. I felt so confused and I believed doctors must have the solution but unfortunately that was not the case. One of the things that shocked me the most – the total ignorance regarding my condition, especially from the doctors.
After this appointment, I felt that I was sentenced to live with psoriasis for the rest of my life, with no expectations for a cure or improvement of my condition. For 12 years I’ve been only receiving prescriptions for shampoos and topical products, which did nothing to improve my condition or the quality of life.
At age of 33, I finally managed to change to another doctor, and for the first time I started a systemic treatment for psoriasis. Considering the significant improvement in the state of my skin and quality of life, the doctor suggested reducing the dose in the treatment. Unfortunately, it wasn’t a happy ending. A small plaque turned into a whirlwind of emotions, and my psoriasis eventually came back in full-force. Despite always trying to be as positive as possible, I could not see a light at the end of the tunnel.
Most people around us, whether family, friends or co-workers, do not understand the impact and how much we suffer from living with this chronic condition. They underestimate the effects and symptoms associated with this disease, and do not understand the extreme fatigue we feel, the pain throbbing all over our bodies when we try to wear a garment, and do not even consider that it may even interfere with our productivity in the workplace and our well-being. I have been very lucky with my family, where I have always received support. However I know that some families do not speak openly about psoriasis and that ends up creating a negative impact on one’s emotional health. At work and elsewhere, people around us quickly make judgments by thinking that difference is something unacceptable, and we end up being discriminated against and only being judged by our looks, not by our competence. But we cannot give up, there are institutions and people, who value us for what we are and see our potential – and we can really make a difference.
The day I went to the pool and they didn’t let me in
One of my favourite physical activities has always been swimming, however since I was diagnosed with psoriasis, I avoided swimming for a long time, since chlorine increased the burning sensation in my skin and intensified the pain throughout my body.
When I started the systemic treatment and my skin improved considerably, I asked my doctor if I could start swimming again. When it comes to physical exercise he is the first to encourage me but advised me to pay special attention to chlorine. By the time I was finishing my membership application, the site manager approached me and said that he could not accept my application because I might bother the other clients. I was puzzled by this situation and immediately demanded the complaints book. Upon realizing that I was even going to file a complaint, they changed their reasoning, saying that they could not be held responsible if I eventually had an allergic reaction to chlorine. At that point I questioned them because they had not been honest with me from the start, instead of taking a discriminatory stance.
Although I tried to reassure them that I had medical approval and even signed a term of responsibility in case I suffered a worsening state of health, they maintained the same position and denied me the possibility of a membership. Despite of this, I haven’t given up doing physical exercise. Whenever I can, I still go swimming and when I cannot, I exercise at home or outdoors.
After my last major psoriasis crisis, doctors thought it would be good to start a treatment with biologicals. My skin, after 14 years, is now completely clear.
It has been a very winding road, full of mishaps and conquests. I do not know where I’m going to get my strength, but I try to be always optimistic. I ended up adopting humour as a defense mechanism in many situations. It may seem impossible to erase negative comments from our memory, or to feel comfortable whenever we feel the stares of other people. But when we allow ourselves to relax, we also draw relaxed people into our lives.
It takes a lot of strength and courage to face psoriasis but never give up being happy and feeling good.
There are many people who feel alone. For those, I have a special word of strength and encouragement: you are not alone.
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