Psoriasis - The Silent Disease
What does this really mean to me? It means this disease can be quiet and does not speak, there is nothing letting me know that it would show up and show out whenever it felt like it. How can you show up and not let me know? Just one day out of the blue, you were there. You were so silent and I never heard a thing, not even a whisper. You had me feeling ashamed and embarrassed at how you had taken control over my body with flakes and scales everywhere, but I continued to stay silent.
We know more about the disease now
Many are affected by this silent autoimmune disease. It's been around for decades and has no geographic prejudice. It came in silence with its level of frustration and misunderstanding. Doctors fifty years ago didn’t know much about this disease. They smeared me in smelly tar, jells, wraps and creams. There was no TV ads, actors, lobbying, or research for psoriasis as it is today. They were no advanced medical technology back in the day on psoriasis. People weren’t as educated about psoriasis and psoriatic diseases as they are today, and we felt self-conscious knowing it could flare when we got stressed about anything our life.
My journey has been lots of onlookers standing on the sidelines looking at every symptom that I had. I've experience spectators at my workplace, school, in the grocery store, church, neighborhood; people just staring and pointing. People don’t see a sick person, they see someone who should be well and able enough to complete everyday tasks. They only see someone who is lazy. They only see the scaly skin that would flake and peel. If they could just see the burning and itching that I was suffering from.
Speaking up and speaking out
This is why when I'm around like minded people with this disease I've shut the door to spectators. We have triumphantly marched through the earth and now many of us are living with psoriasis. Yes, we made our day view in silence, but now we are speaking up. No more silence. You had your day and now it's our time.
I've made up mind and I'm telling it all. I’m speaking up about psoriasis origin and its causes and its effects. I'm speaking about how it thought it had my mouth shut. I had to literally break free. It was very hard yet I managed to run from the silent psoriasis. Psoriasis didn't want me to speak about how long it's been on the scene.
All my experiences will guarantee that no one will face this silence of living in that dark and lonely place. If you have psoriasis then we must not allow the silence of this disease to keep your mouth shut.
Freeing myself with words
I think of many other diseases that don't come so silent such as psoriatic arthritis, it just spoke up one day loud and clear. It spoke to my legs, feet, hands, shoulders and knees. PsA spoke to the joints in my body that causes chronic fatigue, pain and discomfort and limits my mobility.
It doesn’t want me to tell you that your own body is attacking itself then becoming inflamed in order to heal itself. However, the problem lies in the fact that there were no wounds to heal in the first place.
My hearing ears have given me freedom. I am now free to live life with this silent autoimmune disease and be free. This is so awesome and has powerfully given me a new freedom I never knew. I decided years ago to step-up and speak out. I speak on Capitol Hill, Town Hall Meetings, conferences and I blog. You will not silence me anymore.
I have understanding now more than ever, and I can share about my skin and not cover up anymore. People take things for granted, like wearing shorts or short sleeves. There are many people who still cover up. We need to talk about this more. This is something I wish I could change. Don’t suffer in silence. Psoriasis may be silent; but I, the patient advocate have the last word.
How often do you experience brain fog?