When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

• Using attractive scarves or hats to cover thinning hair or bald spots
• Experimenting with different cosmetics to see what works best
• Treating yourself to a spa manicure and pedicure as a pick-me-up
• Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
• Soaking in a scented Epsom salt bath to ease pain and relax
• Consulting with a hair stylist about better styles for thinning hair
• Using gentle, non-drying facial cleansers and lotions
• Switching to an electric razor to improve ease and safety
• Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.

You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.

From everyone at PatientsLikeMe, Happy New Year!

The beginning of a new year is always a time for reflection.  You look back, you look ahead and you try to find the big picture.   For patients living with chronic health conditions, a new year can be an opportunity to implement and share lessons learned along the way – about how to cope, manage symptoms, find support, maintain perspective and much more.

Here are a few pieces of advice from members of our Mental Health and Behavior Community in response to the thought-provoking question, “What do you wish you could tell yourself 10 years ago?”

• Guilt drains your energy and doesn’t accomplish anything. Let it go.
• Take your meds as prescribed for your sake – and your family’s.
• Don’t like your provider? Trust your instincts and find a good one.
• Just taking a shower or going on a walk can make you feel better.
• Pick up the phone. Only you can break the cycle of self-isolating.
• Things can get better with the right treatments and care team.
• Get help if you’re self-medicating with alcohol, drugs or self-harm.
• Remember, you’re not crazy or lazy – you have a chronic disease.
• If you’re unable to keep working, apply for disability right away.
• Be kind and patient with yourself because life is hard enough as is.

Is there something you wish you’d known earlier? Chime in on the discussion or share your thoughts in the comments section. Here’s to getting a little wiser in 2013!

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 170,000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.

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.

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.

From our Fibromyalgia Community, some of the unexpected benefits include:

• Getting to spend more time with children or grandchildren
• Taking advantage of “good days” with a little extra gusto
• Appreciating what you have…and knowing it could be worse
• Refocusing on new hobbies like gardening and meditation

From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:

• Letting go of the pressurized feeling that you have to do it all
• A deeper understanding of how many people face major challenges
• Discovering new artistic talents, such as painting or needle work
• Slowing down the pace of life and prioritizing sleep – without guilt

From our Epilepsy Community, some of the unexpected benefits include:

• Learning to never judge a person by only what you see
• Becoming more patient and not taking anything for granted
• Filtering out fair-weather friends and uncaring partners
• Having extra motivation to live the healthiest lifestyle possible

What about you?  Have you noticed some positive takeaways from your illness?  Share them in our comments section in honor of Thanksgiving.  And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.

Have you ever wondered how best to interact with someone who is living with depression, bipolar disorder or another mental health condition?  Have you worried that you’re saying or doing the wrong things?

Last week we recognized Mental Illness Awareness Week on the blog, and to continue our coverage, today we thought we’d share with you some of the tips suggested by our members in a ongoing forum discussion entitled “What NOT to Do with the Mentally Unwell.”

What our members say not to do…

1. Don’t suggest activities that interrupt their regular sleep schedule.
2. Don’t imply they are faking just because they “look okay” to you.
3. Don’t ask if they are taking their meds every time something happens.
4. Don’t get upset because you can’t fix it – or make it better.
5. Don’t act like they are “made of glass” and avoid dealing with them.
6. Don’t push the latest cure-all you saw on TV or read about.
7. Don’t suggest that they should “snap out of it” because “it could be worse.”
8. Don’t talk down/louder/slower as if they are a child or have low IQ.
9. Don’t buy into the stigmas or stereotypes and forget who they really are.
10. Don’t abandon them just because they are depressed or unwell.

What they suggest you do instead…

1. Do give them a hug for no reason but because you love them.
2. Do be gentle with your words and be an anchor amidst the storm.
3. Do make chicken soup and keep the fridge stocked with favorites.
4. Do listen and ask questions, and don’t feel like you have to relate.
5. Do remember that it’s okay if you don’t know what to do or how to help.
6. Do call or email just to let them know that you are there for them.
7. Do offer to go on an evening stroll or a walk in the park.
8. Do allow them to be alone if desired and come to you when ready.
9. Do know that you don’t have to cheer them up – only help keep them safe.
10. Do remember they are the same person they always were, just with a diagnosis.

Do you have other suggestions to add?  Or perhaps a different perspective?  Share your insights in the comments section, and if you’re not already a member of PatientsLikeMe, connect with thousands of others like you in our active mental health community.

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Watch the Bloomberg TV profile below:

Visit our Press page for other recent PatientsLikeMe media highlights.

Did you know that one in four adults – or approximately 57.7 million Americans – experiences a mental health problem in any given year?  Or that one in 17 lives with a serious, chronic mental illness?

Since 1990, National Mental Illness Awareness Week has been recognized by the U.S. Congress as a time for mental health advocates and patients to join together for various awareness-raising activities. Sponsored by National Alliance on Mental Illness (NAMI), the goal of this week is to transform the way we think about mental illness, which is defined by NAMI as “a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning.”

Like any other medical condition affecting a particular organ, mental illness is not caused by personal weakness or character defects, and it can affect individuals of any age, race, religion or income.  As an example, some famous people who are known to have lived with mental illness include Abraham Lincoln, Winston Churchill, Gandhi, Tennessee Williams and Mike Wallace (who was eulogized by one of our members last June).  Below is a new PSA ad for National Mental Illness Awareness Week 2012 that focuses on some of these legendary icons, stressing that “you are not alone in this fight.”

But what about feeling like no one understands what you’re going through?  That’s where finding others like you – such as those with the same diagnosis (or diagnoses), symptoms or treatment side effects – comes in.  At PatientsLikeMe, we have tens of thousands of patients sharing their experiences with more than 60 mental health conditions, including:

• Bipolar disorder
• Eating disorder
• Generalized anxiety disorder (GAD)
• Major depressive disorder
• Obsessive compulsive disorder (OCD)
• Phobic disorder
• Postpartum depression
• Post traumatic stress disorder (PTSD)

In addition to exchanging in-depth treatment evaluations about the effectiveness and side effects of commonly prescribed medications such as Cymbalta, Klonopin or Wellbutrin, our members are connecting and supporting each other daily in our Mental Health and Behavior Forum.  Currently, there are more than 39,000 participants and more than 333,000 posts in this highly active forum, where you can find answers, empathy, humor and thought-provoking conversations day or night.

Get to know our mental health community – including what depression feels like to them or how PatientsLikeMe has helped them be more open about their condition – today.  Also, stay tuned for some tips from our community about what to do and not do when interacting with someone who is living with a mental health condition.

Are you in recovery from an addiction or mental health disorder – or do you know someone who is?  The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!”

There are several different ways to participate in this annual event, which promotes the societal benefits of prevention and treatment for mental and substance use disorders:

• You can find or sponsor a community event
• Add an awareness widget to your website
• Enter pictures in the Flickr challenge
• Order a customizable PSA for local TV

Now in its 23rd year, National Recovery Month was founded on the belief that we should celebrate the gains made by those in recovery, just as we would with those who are managing other health conditions.  The goal is to spread the positive message you can live a healthy and rewarding life with the aid of treatment and mental health services.

Are you looking to start on the road to recovery?  Reclaim your life by calling SAMHSA’s National Helpline (1-800-662-HELP), where you can be assisted in both English and Spanish.  If you’re already in recovery, find solidarity and support by connecting with others like you at PatientsLikeMe.  We have thousands of patients sharing their experiences with numerous disorders, including:

• Alcohol addiction
• Bipolar disorder
• Drug addiction
• Generalized anxiety disorder (GAD)
• Major depressive disorder
• Phobic disorder
• Post traumatic stress disorder (PTSD)

Exchange stories and tips – as well as in-depth treatment evaluations – with those who can truly relate today.

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness.

Here are some of the small and large contributions our members have made, helping them to feel good about themselves:

• Going to the hospice to sit and talk with the residents
• Sending handwritten letters via snail mail to loved ones
• Participating in educational events about the role of service dogs
• Getting good friends together for a gathering to reconnect
• Volunteering in a food bank to appreciate having food to eat
• Calling an isolated grandparent or friend regularly on the phone
• Allowing the cat from down the road to come inside and snuggle
• Fostering or adopting medically fragile children in the system

Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check out two books recommended by our members for inspiration:  Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.