2 posts tagged “newly diagnosed”

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.


PatientsLikeMe Facing World AIDS Day 2009

Posted December 1st, 2009 by

Join AIDS.gov in Facing AIDS for World AIDS Day. December 1, 2009Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day.

The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community.  These leaders have chosen to share their health data and their personal stories of living with HIV, not only to manage their own disease, but also to help better the lives of others with HIV.

For 27 years, HIV/AIDS has been a global epidemic.  Today, our online community has a few thousand patients whose experiences of living with HIV run the gamut – from the newly diagnosed to those who were infected long ago.  Approximately  334 patients (or 12% of our community) indicate they were infected with HIV more than 20 years ago (such as BrightonBear, an early member who shared his story with us in this interview).  Similarly, 84 patients indicate on their profiles that they have been living with AIDS for more than 15 years.  All of these members have a lot to share – both through data and conversation – about how they continue to face the symptoms, treatments and side effects, and stigma of living HIV-positive.  There are also members who are new to HIV, with 162 patients in our HIV Community indicating they were diagnosed less than 2 years ago.  Our patients, both newly diagnosed and veterans in the HIV community, are true leaders – openly sharing their real-world health data and personal stories about living with HIV.  Here are some interesting tidbits the community is sharing:

  • How are patients like you evaluating the most popular treatments used for HIV? See what they say in our treatment reports about Atripla, Ritonavir, and Truvada.
  • Ever heard of Coconut Macaroon Cookies used to “treat” HIV? A handful of PatientsLikeMe members cite it as a great way for patients to curb their diarrhea, a common side effect of their cocktails.
  • That numbness in your hands and feet could be peripheral neuropathy, a common symptom in HIV. Patients are discussing treatments ranging from prescription drugs to lifestyle modifications to lessen the effects.
  • Some of the most discussed topics patients in our forum include specific treatments (i.e., Atripla and Truvada) and side effects, common symptoms (like fatigue) and other quality of life issues like depression, relationships, dealing with a new diagnosis, and coping.

For the past two years, PatientsLikeMe has worked in cooperation with AIDS.gov, a government media program committed to improving the lives of patients with HIV.  Check out their “Facing AIDS” photo campaign in honor of World AIDS Day.

Thank you to all of our members who continue to share and learn. It’s you who are leading the way.

PatientsLikeMe member mcotter