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How to Ask for Help

Patient Experiences / By

Everyone needs it, but sometimes the hardest thing to do is to ask for help. Opening yourself up to feeling vulnerable, especially when you are already feeling compromised by your condition, can be challenging. It is important to remember; you do not have to shoulder it alone. Your chronic health condition may force your hand in making some adjustments to your everyday life, not only for you but those around you. Depending on where you are on your health journey, you may need to think about asking your loved ones for a bit more support. It can be hard to admit that your condition is taking away yet another piece of who you used to be, but reaching out for help is necessary for managing your stress and comfort levels. You don’t have to feel ashamed for needing a helping hand (or two!) The National Alliance on Mental Illness reminds us that there is no right or wrong way to ask for help, but if you are looking for some motivation for starting these kinds of conversations, try these tips our members have recommended: Be clear and specific about where you need help or support When you ask for help, …

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9 mental health podcasts worth listening to

2 Comments / Bipolar disorder, Depression, Mental Health, Patient Experiences, PTSD / By

Podcasts are an easy (and usually free) way to stay on top of what’s new across a wide variety of topics — they’re kind of like internet radio on demand, and usually broken up into episodes that you can download on your computer, device or phone. Below, we rounded up 9 podcasts focused on mental health that are worth checking out. While podcasts can act as complements to your mental health care plan, they’re not intended to be a substitute for therapy or medication.   Mental Illness Happy Hour   The New York Times described this podcast as a “a safe place in which he [the host] and his guests talk about their fears, addictions and traumatic childhoods.” This is a weekly podcast that features interviews with people from all walks of life and explores mental illness, trauma, addiction and negative thinking.   The Psych Central Show   This weekly podcast takes an in-depth look at topics related to psychology and mental health. Hosts Gabe Howard and Vincent M. Wales discuss everything from online counseling and the toll of texting to dealing with narcissistic coworkers and more.   The Hilarious World of Depression   This podcast aims to tackle the …

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Finding answers from the community: Members helping members

Patient Experiences / By

Offering words of encouragement. Sharing advice. Just being there to listen. Over the years, we’ve seen countless examples of members supporting each other (did you know there’s more than a 100K posts that mention the word “thank you”?). Check out some of the ways members are stepping up and lending a hand. Life-changing advice: Get a second opinion PatientsLikeMe member Theresa (Pipersun) was diagnosed with idiopathic pulmonary fibrosis (IPF) in June 2017. While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. After sharing her concerns in the forum, fellow IPF members stepped in and recommended getting a second opinion. Here’s what happened: “My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.” When her doctor …

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Creating communities, on and off PatientsLikeMe

1 Comment / Patient Experiences / By

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community. From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum. Taking it offline What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together. In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.   Connecting …

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75k [virtual] hugs on PatientsLikeMe – and how social connections are good for your health

Conditions, Patient Experiences / By

Newsflash: “Social Interaction Is Critical for Mental and Physical Health,” as The New York Times recently reported. Decades of research support the theory that social connections can have a positive effect on your health. Having social ties may help prevent illness and is still a boon to your health when you’re sick or living with a health condition. Check out some of the research and see how members are supporting each other socially on PatientsLikeMe. What’s the science behind social connections? As the Times reports, a 2001 study found that people with coronary artery disease who’ve had a heart attack have a lower risk of another cardiac arrest if they’re more socially connected. Other studies have shown that social interactions and support may help with everything from wound healing and physical pain to mood and psychological symptoms. Researchers who’ve studied the benefits of social interactions for women with breast cancer have found that receiving social-emotional support may reduce stress and affect the body’s “HPA” axis (or hypothalamic-pituitary-adrenal axis – that’s a mouthful). Basically, the HPA axis uses glands, hormones and nerves to help regulate several processes in the body: stress response, immune and digestive systems, mood and emotions, sexuality and …

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“Everyone needs a “Me too!” moment” – Member Shannon on exposing her truth

Conditions, Multiple Sclerosis, Patient Experiences / By

“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.” Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS. Check out her story about exposing her truth and helping others who feel misunderstood. Searching for answers While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have. A few months into trying to solve the mystery …

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Going global for World MS Day

Conditions, Multiple Sclerosis, Patient Experiences / By

It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say:     “MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as paradise on earth. For me living with MS is like dying every second in my crippled life. Imbalanced walk in MS really sucks. Shaking of arms or very poor pen grip in my hands makes me feel pity on myself. I don’t think that staying positive works. I had to leave my engineering studies and a government job because of it. Unfortunately, I can’t let others feel what I or my body feels for myself. I can’t afford the life-long treatment for an incurable disease like MS as I’m an idle cripple.”   “I am 50 years old and live alone with severely advanced SPMS. While my MS has progressed very quickly, since I have accepted I need care 22 months ago, the government has been EXTREMELY slow to catch on how desperately in need of care I am. I have [had] to fund most …

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“There were so many people asking the things that I was too afraid to ask”

Multiple Sclerosis, Patient Experiences / By

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness. A jarring diagnosis “Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.” The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help. A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI. “This all took place within a …

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Meeting PF patients where they are

2 Comments / Conditions, Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. “I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.” John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community. Life after transplant John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle. “The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and …

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#NotAlone Recap: On PatientsLikeMe, no one is alone…

Patient Experiences / By

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site. We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!  “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS “…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia “I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have …

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