12 posts from December, 2012

Not Recognizing the “New Me”

Posted December 10th, 2012 by

Are You Resistant to the Idea of a Wheelchair?

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

  • Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
  • Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
  • Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.


Psoriasis in Fall: What We’ve Learned

Posted December 7th, 2012 by

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Check Out the Fall Psoriasis Survey Results

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

How Our Survey Respondents Cope With Drier Air

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score). Also, discover how many of our respondents get annual flu shots.

The Cover of Our Latest Patient Voice Report on "Uncovering Psoriasis"

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

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