The Value of Openness: The PatientsLikeMe Blog

As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in.

You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people - here’s what they have to say.

Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site.

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“It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and that’s why I was ‘different’. The more information we can share with each other, the better.”
- Epilepsy community member

“I feel like a breath of fresh air of hope; just knowing I’m not alone and there are others who experience side effects, have good and bad days even experience combination seizures.”
- Epilepsy community member

“[It] really puts my mind at ease and sounds like my [treatment] dosage is not that unusual this soon after my transplant. I look forward to eventually taking it down.”
- Transplant community member

“I am so thankful [to have] found this site…where I can, after a fashion, talk and identify with others on the PD bus. We understand. We are similarly bound.”
- Parkinson’s community member

“…just being able to see so many people that are going through the same thing I am (literally sorted by [treatment] and [diagnosis]) - makes it feel just a little bit more in control for me.”
- Fibromyalgia community member

This entry was posted on December 3, 2010 at 3:27 pm and is filed under ALS, Chronic Fatigue Syndrome/ME, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases, Share and Compare, Viral Series. Tagged: epilepsy community, fibromyalgia community, Parkinson's Community, patient voice, share and compare, transplants community. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.