As psoriasis patients we are often asked our opinion on a range of issues concerning our disease. From things such as what it is like living with a chronic disease and its impact on our lives to treatment options and support.
Some of us have taken part in focus groups or patient advisory boards in the hope our voice and experience will not just be heard but actually listened to. In other words take what we say and apply it.
My question is this.
How would you react/relate to a spokesperson advising you on issues about your psoriasis who do not have the disease themselves, no medical background nor any first hand connection to its struggles, treatments and effect on everyday life?
I confess I am out to prove a point and the only way I can prove it is with your help. Please post a reply.
I always had a problem with that. I think that a spokesperson should be either someone who has the desease first hand or someone who is working closely with more than one person who has the desease cause there are all different symptoms and i mean does extensive research on people who themselves dont want to be the speaker. But a person who does want to speak should be the first to do so.
ReplyDeleteOur message, are they getting it? Not when someone represents us who don't have it. Sure they can tell what it is and explain to someone scientifically but they don't really understand it. When they talk about it, their hearts are not into it. It makes me so angry when I see people on TV talking about Psoriasis. I wish I could come through the television and give my own statements about living with it. I could put the emotion into it like it deserves. They represent us but still approach it like it's no big deal. And I absolutely hate it when they say there's no cure but it can be controlled, like it's that easy. Pisses me right off!
ReplyDeleteIt's not logical to have someone advising or speaking on behalf of those with psoriasis who do not have the diseases or medical knowledge about the disease. With that said, there are doctors and dermatologists WITH knowledge that shouldn't be advising or speaking on behalf of those with this disease.
ReplyDeleteI agree with jakob, sometimes some specialists are the worst advocate, mainly (in my opinion) because for some, the disease is just one entry in their school book. They may hear about it in their practice but overall, it's all over after a hard day at work.
ReplyDeleteAs a patient I still had, some times ago, those huge painful rashes on my body after 5 pm.
I found out, after a presentation I did last Thursday, that dermatology nurses are much more compassionate toward the disease. Mostly because they spend more time with the patients in opposition of a 5 minutes consultation. Also, patients are most likely to feel more free to speak to nurses about the burden of psoriasis.
Too often we forget the nurses that play a big role in patients treatments.
As a spokesperson raising awareness about psoriasis and consoler of afflicted patients, I feel honoured to hear back from them: "oh, it feels so good to talk to someone that know exactly what is to live day by day with psoriasis."
@ Travis: I understand that it can be frustrating to hear that there's no cure but it can be controlled. On the other hand I feel that it's the truth that need to be communicate to patients. But the fact that it requires a tight dedicated follow up which too often falls between the cracks. This is why I never romance psoriasis treatments to patients. Letting them know it can be frustrating, long and painful, physically and psychologically but at the end there is a great treatment for everyone even if the path that leads to it may seems overwhelming.
Therefore I also try to become a motivator as well to psoriasis patients. Helping them humanly going thru the process.
So in my opinion, as time goes by, more and more patients will play the roles of spokespersons and will reach out to others with psoriasis and in the most effective ways.
I think we need both. I hate a doctor telling me about the feeling and emotions I might go through when they do not have it. Yet we need a doctor to keep the research going and funding.
ReplyDeleteTo get the point out about how it effect our lives we need a person who has P or PA and talk about how it effected them and how they carry on and support.
I'd have to say I'd have little regard for the spokesperson trying to advise me who has no MEDICAL experience and no PERSONAL experience with psoriasis. I've found some of the most eloquent and effective remarks and testimonials come not from doctors OR psoriatics, but from the spouses and family members of psoriatics. Here's one terrific example:
ReplyDeletehttp://www.flakehq.com/archives/spots.htm
FlakeHQ.com has countless emails archived from family members who could describe the agonies of psoriasis accurately. I counsel flakers to make sure their friends and family understand their disease.