Psoriasis always strikes me as a very unique disease. It is a chronic lifelong illness with no cure, yet is not life threatening - although it has been known to lead to suicide. Despite this, the support network seems almost non-existent to most patients. Psoriasis does not get the press and media coverage that most other chronic illnesses do. It leaves patients feeling alone and neglected.
Does your doctor understand?
I feel that it is a condition that is crying out for a clinic and help group approach where healthcare professionals and patients contribute. Why have patient involvement? Well it’s easy, really. There are things that the doctors cannot tell you or relate to unless they have psoriasis. Whilst the doctor can tell you what psoriasis is, how it can be treated and how the medications work, they cannot tell you what living with psoriasis is like.
Your doctor cannot tell you that you will have endless sleepless nights where you might scratch until you bleed. Your doctor can’t tell you about the itch that just won’t go away or the feeling of waking up and feeling like you are in a crisp packet.
Then there is the anxiety and distress caused by your body looking disfigured, how you may start to hate yourself and not want to go out in public. There can be moments you want to hide away, such as when you are talking to someone and a piece of skin blows out of your nose or falls off your scalp.
Your doctor can't explain the torture you may go through when your skin is weeping and sore or the embarrassment of seeing a pile of skin form on your friend’s carpet when you go round for a cup of tea. Your doctor can't tell you about the deep mental anguish you can suffer or prepare you fully for the fight you are about to start.
Embarrassment and shame
I make this sound like the end of the world and the worst illness you could have. For many psoriasis sufferers it is. We feel like we have it worse than anyone else, and this brings with it a feeling of selfishness and shame as you remember that there are actually people out there with life-threatening conditions who are much worse off than you. When you are diagnosed, no one tells you these are the feelings you can go through.
There are people who can help you through the battle. You could see a psychologist who will help you release your feelings in a healthy way and help you to manage your psoriasis. This is a big step forward in the treatment of psoriasis and talking is one of the best things you can do. If you need to talk to someone who really understands what you are going through, find another patient. There are millions of us out there and a growing number are willing to help others.
I am not saying to ignore your doctors, you still need them. Treating psoriasis is a team effort, believe me you cannot do it on your own. This year especially has seen increased efforts to get patients involved in not only the treatment, but also in research and development of new treatments. Many people I have spoken to in the healthcare and pharmaceutical industries have said the same thing: "The patients are the key." We need each other.
So if you are a psoriasis patient, I have this to tell you:
Everyone who has psoriasis understands what you are going through. The internet is the perfect tool for us lonely souls to reach out, talk to each other, and inform the pharmaceutical companies and researchers. Together we will kick psoriasis’ backside.
MyPsoriasisTeam.com is the social network for people living with psoriasis. You can meet others, tell your story, ask questions and share your experience. This is a great support network.
This post was written by Simon Jury. It originally appeared here and is reposted with permission. Simon loves food (cooking and going out), his cat Bob, and music (BB King, Sinatra, Elvis, Buddy Holiday and Jersey Boys). He blogs about psoriasis on My Skin and I.
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