When it comes to healthcare and wellness these days, which tool would you more likely associate with quality care and a positive experience – a stethoscope or an iPad? Well, if it were the 7-year old version of me talking, there’d be no doubt in my mind that “stethoscope” would be the answer.  Obviously, 7-year old me has never seen an iPad – he’s busy just trying to figure out how to beat Super Mario 3 for Nintendo.  Best of luck little dude!  Present day me picks up a stethoscope and sees a tool that does only one measly thing.  Bore snore.

It’s truly amazing just how far healthcare itself has come in terms of its adoption of certain technologies and their various impacts on the outcomes.  According to some research done in 2012 by pmlive, nearly 62% of physicians were using an iPad professionally and 85% using a smartphone, with those numbers expected to continue growing aggressively here in 2013.  And docs aren’t just using iPads or smart phones to update electronic health records (EHRs) or record prescription orders, they’re charting, taking vitals, recording images, communicating with team members, and gathering patient feedback.

Some hospitals, such as Mayo, have even been known to build their own apps internally and sell them to patients!  This is particularly interesting because it points out that the health IT evolution hasn’t just been limited to devices in the hospital setting – it’s expanded to consumer focused software and applications as well.

Map My Fitness and Fitbit have helped consumers get more excited about their fitness routines and cardio activities.  Wello has brought personal training into the home so people can train virtually with a professional.  Ginger.io is using smart phone and tablet data to help researchers better understand what the world is out there doing every day in terms of their health.  My company, Cariloop, is working to help people do better research about senior care and service providers and save time connecting with them.  Last, but certainly not least, this amazing concept of Treatment Diaries is working to connect people with certain illnesses or conditions and share information that might be valuable or comforting.  I can’t help but smile when I think of all the cool stuff that hasn’t even been launched yet!

Still, these exciting trends within the hospital as well as the wave of consumer applications have their fair share of skeptics.

Technology can crash. Humans can create typos. Data can get deleted or lost. Privacy may be breached. The internet could go down. Devices can break, malfunction, or heaven forbid – run outta batteries!

Clearly, I’m not the first person to bring up these concerns.  Do a search for “Health technology issues” and you’ll find plenty of statistics and cases that point out the weaknesses in letting technology storm the gates of the healthcare system.  But, I’m not going to quote any of them, because I want to hear from you instead.

Are you someone who is excited about the possibilities of what technology could do for our healthcare system, or are you someone that thinks all of these additional gadgets and do-dads are going to just lead to more confusion, mistakes, and potentially lives?

Join myself and others on 4/30 at 8 PM EST for an exciting TweetChat (#treatdiarieschat) about the big developments in Health Technology and just what it means for us as we go forward.

In my book,The Malformation of Health Care book (now available on Amazon.com, I detail several tips on how to navigate through our very complex and often times confusing health care system. Today I want to take you inside the book and give you some basics of where to begin. Although some of these topics may seem obvious, they are often things that are overlooked when we are thrown into stressful situations.

Checklist for Health-Care Rights and Service

• Know your benefits: Get a printout from your insurer and know your deductible and out-of- pocket maximum. This way, you can track what you are responsible for. Be an educated consumer.
• Ask for a case manager. This is a contact person within your insurance company who will know your case and be of real benefit to you if it is a complicated one. If your insurance company says you can’t have a case manager, keep asking. Once they see all the claims coming in, most likely the company will change its mind.
• Keep all of your insurance claims and bills/booklets, which you can usually do online. Keeping hard copies is probably a good idea, just in case your computer or backup drive dies.
• Appoint an organized family member/friend to help you with all of this because it can be overwhelming especially if you’re sick.
• Reach out to a hospital social worker or to local nonprofit organizations (such as the Cancer Legal Resource Center, the Leukemia & Lymphoma Society, etc.) for ongoing help or support. They will know of good resources to help you if you’re in trouble and can save you a lot of legwork.
• Write down the name of anyone you speak with at your insurance company every time you contact your provider or your provider contacts you. Make sure you record the full name, date, and a detailed synopsis of the conversation.
• Follow up!
• If you are denied coverage, do not be afraid to appeal. Jump through all the hoops the insurance company asks of you, and document everything. If, at the end of the appeals process, you need an attorney, you will have something to give him or her.
• Learn all you can about your condition. A lot of times, insurance company workers know little about your illness and you must become your own best advocate.
• Check with your insurance company about its fertility policies. I include this advice because many young adults are diagnosed with serious illnesses that may require heavy medications and treatments. At the point of diagnosis, someone who is in their late teens may not be thinking about future plans for a family.
• Have a relationship of open communication with your doctors, who can help to advocate for you. Know that there is creative coding for blood tests and other procedures you may require to facilitate your health. A test that might not be covered if coded in one particular way may pass muster with your insurance company if coded in another way.
• Know your out-of-network benefits. Sometimes you may be referred to specialists who may not be in your insurance company’s network␣ What is the percentage and how does your out-of- network benefit work with your deductible? Do any of the company’s in -network doctors offer the same care as the out-of-network specialist to whom you have been referred? If not, most policies have provisions to cover out-of-network providers when no in-network doctor has the same capability.
• Try to connect all of your doctors, so that each knows about your health in relation to the other physicians providing your care. If you can start a group dialogue among your doctors, your care will be better.The Malformation of Health Care (Chapter 25) Copyright Erin Havel 2012.

Join us on 3/19/13 at 8pm ET at www.tweetchat.com for our weekly #TreatDiariesChat with Erin Havel and learn more!

My name is Karen Vasquez.  I started a blog called Scleroderma, Sarcoidosis and Box Wine in 2009.  After meeting fellow patients on Facebook and Twitter, I realized not too many people were talking about scleroderma, but I found plenty of fellow patients. I hypothesized that the PR department for disease naming really messed it up for scleroderma patients.  So I changed the name of my blog to The Mighty Turtle.  It is easier to remember and spell; but I chose the turtle mascot because turtles are experts at adapting.  They did out-survive the dinosaurs.

My adventure with scleroderma began in 1992.  I was 22 years old.  My fingers would turn blue for what I perceived as for no reason.  In 1994, I was awarded the diagnosis of scleroderma.

My first question was: Will this kill me?

doctors’ answer:  We don’t know.

The only logical follow up question was, “Can I drink with these meds?”

And so began my adventures of blood tests, pulmonary function tests, echo cardio grams and a few I don’t care to remember.  With every introduction to a new test followed by, “ You are testing me for what?!!!  Yes, they were testing me for failure of organs and body parts that wouldn’t grow back like my heart, lungs, kidneys and my esophagus.

Meanwhile, I had to explain to friends and family, to whom I did not look sick, that I had a disease they had never heard of before.  I felt crazy telling them about it.

But I wasn’t crazy.   Scleroderma was considered a rare disease because not many people had ever heard of it.  At the time, there were very few people surviving scleroderma.  Every day is Rare Disease Day to a patient of a disease few have heard of.  The only other patients I had heard of in 1994 were over 40 or dead.

Since my diagnosis, life has been no picnic, but life isn’t supposed to be a picnic and anyone who says so is most likely hallucinating.

Through the years, I have used humor to cope with the progression of scleroderma throughout my body.  I have taught doctors about scleroderma.  I have dated medical students who were initially attracted to me because of my medical history.  Let me tell you, if you are attracted to a medical student and have a rare disease, it’s a great ice breaker.  Who am I kidding?  It’s like catnip! Well, before everything went digital.  I have an MRI film of my lungs I keep in my bedroom closet just for the right occasion, but I digress…

Fast forward to 2013.  I have a stable prognosis with medication.  I’m still here.  I write about my experiences to let other scleroderma patients know that they are not alone, and hopefully help them laugh at what scares them.  Sometimes, I talk about politics, religion and current events because I want to be involved in the world outside my illness.  There is more to me than my diagnoses and I love great conversation, political debates and the Green Bay Packers.

I hope that my writing can help others with chronic illnesses,  but I want to reach outside the chronic illness community because we need to fight for a cure.  Staying within the confines of the chronic illness community is like preaching to the converted.  We know about these diseases- every day is (disease name here) awareness day.  There are diseases with different names that share symptoms.  We have so much to learn from each other.  I strongly believe that progress in research of one disease provides clues to help solve the mystery of other diseases.  We truly are in this together, chronic illness or not.

I also use humor to cope and raise awareness for a very serious reason.  I want a cure in my lifetime.  The damage is done to my body and there is no getting back what I have lost.  My goal is to maintain what I have and stop the scleroderma from progressing.  I am okay with that.  But I will tell you what I am not okay with:

My son is 9.  Some day in the distant future, he will be sitting at my memorial surrounded by friends and family.  The one thing I do not want him to  do at my memorial is talk about the big fundraiser he will have in my memory.  I want a cure for scleroderma  in this life.  And it may be a selfish reason but I don’t want my son fundraising for to cure a disease after he scatters my ashes into the sea.  I want him to follow his dream to walk on Mars.  And he can lay my ashes to rest there along with the knowledge that scleroderma was cured.

It’s my dream.  And when I dream, I go big or go home.

This Tuesday, March 5, Treatment Diaries has given me the honor to speak about scleroderma.  Please join us for a great #treatdiarieschat.   Most of all, help me raise awareness for my fellow scleroderma patients, researchers who work tirelessly for a cure and for my son, so he will not have the need to do a fundraiser to cure scleroderma in my memory.

Thank you.

Each year over a million women are diagnosed with a benign breast tumor or lump.  Many of these are fibroadenomas, the most common type of benign breast disease.  Although not cancerous, half of them are surgically removed at the request of the patient.  It’s a procedure covered by most insurance companies.

Of course, surgery is not something anyone looks forward to.  The risks include damaging breast ducts, loss of tissue, and false-positive mammograms in the future.  The other option is to simply wait.  “Watchful waiting,” as it’s called, isn’t the same as doing nothing.  Every 6-12 months women have their fibroadenomas checked for growth, pain, or other changes.  When watchful waiting gets tiresome or stressful, quite often, women will have surgery anyways.

Today, there is another option.  Cryoablation or cryo is an established technique for many diseases using extreme cold to freeze and destroy tissue.  Over time, the body absorbs the cells and the tumor disappears.  Dozens of top breast surgeons nationwide now use cryo to treat fibroadenomas. Unlike surgery, no tissue is removed from the breast with cryo.  It’s also less expensive and less invasive. Even better, it is an in-office procedure that takes less than 15 minutes, saving days off of work.  Patients, employers, and insurers all win with cryoablation.

Breast Health Options was inspired by women concerned about their fibroadenoma treatment options.  They counseled with their doctors.  They talked to the manufacturer.  They started writing letters.  To support them, we built a platform for them to advocate.  While some insurers still won’t cover cryo, we hope to change that.  We encourage you to visit breasthealthoptions.com where your story matters when it goes live in the next couple weeks.  In the meantime, connect with us on Facebook atfacebook.com/breasthealthoptions.

Join us February 26th, 2013 for an hour long tweet chat at www.tweetchat.com #treatdiarieschat. We’ll be tweeting about this topic and answering your questions.  In the meantime, log on towww.treatmentdiaries.com and scribble with us – Your Diary…Shared Healing!

According to The National Association For Continence (NAFC), over 25 million people deal with a type of incontinence, and it’s important to note that incontinence itself is not a disease, but a symptom. A symptom that, for many, brings on feelings of embarrassment, humiliation and can progressively keep them from living their daily lives as they normally would. The first few dribbles might be written off as the result of having a good laugh or strong sneeze, but as incontinence progresses, the haunting fear of an “accident” can interfere with activities from going to the grocery store, on vacation or even work. More on how to “avoid avoiding” to come.

Since you’re already here at the Treatment Diaries mecca, you know how hard it is to manage any medical condition without some type of support. Because incontinence is still riddled with stigma, reaching out to others can be difficult, even in an anonymous forum such as this. Try to remember that millions share the same challenges as you, including embarrassment, which should help diminish your own embarrassment. The education, inspiration and encouragement available from support groups help in ways that only become tangible once you reach out. The simple act of being able to talk openly about what you’re facing frees you from built up stress and can provide new insight into coping mechanisms.

Let’s start with incontinence basics: What are the different types of incontinence and why do they occur?

Stress Incontinence: Though the namesake seems to imply a state of mind, being stressed is at most a symptom of the symptom. But take a deep, relaxing breath. Following these descriptions will be a multitude of ways to help reduce incontinence and its most stressful components. The “stress” in stress incontinence refers to stress that occurs to the pelvic floor in both men and women when they sneeze, cough or lift something heavy, thus putting pressure on the bladder causing leakage. For women, for whom urinary incontinence is more common than men, this can be due to vaginal childbirth, menopause or hormonal imbalances. Male stress incontinence can be caused by a benign tumor on the prostate, prostate surgery or from treatment of prostate surgery. Some causes span the sexes and include weakening of the bladder or its surrounding muscles, weakened or damaged pelvic floor and damage to the nerves that control bladders due to stroke, Parkinson’s, multiple sclerosis (MS) and pelvic cancers.

Urge Incontinence: Other names for this type are reflex incontinence or overactive bladder (OAB); however, keep in mind that you can have OAB and not incontinence. In either case, the urge to urinate comes on strong, suddenly and frequently. It is most common in the elderly population, but can affect anyone at any age when the nerves between brain and bladder have been damaged. The damage can be due to MS, Alzheimer’s, stroke and other neurological disorders that cause the bladder to suddenly contract. The need to vacate the bladder may be uncontrollable when this happens. Other urge incontinence stimuli can be an inflamed bladder wall, inflamed prostate, prostate removal or hysterectomy.

Mixed Incontinence: Though there are other types of incontinence, mixed incontinence is usually a combination of stress and urge incontinence. Its reasons can stem from any mixture of the aforementioned causes for both stress and urge and the cause of each type may very well be unrelated.

Functional Incontinence: This is the most common type of incontinence in older adults. Due to lack of mobility or neurological function (Alzheimer’s, Parkinson’s and arthritis are the biggest culprits) the person is not able to make it to the bathroom on time or can’t undo their clothing before the urine is released.

Many people have temporary incontinence caused by recent surgery or childbirth, certain medications and urinary tract infections.

Because of the social and individual stigmas, there is an unspoken epidemic of adults who wait years before talking to their doctors about incontinence, if they ever have the conversation at all. This is dangerous, as incontinence can be a symptom and indicator of something much more serious. The NAFC website (www.nafc.org) has wonderful resources that help make talking to your primary care physician much easier, including the “UroLog,” basically an easy to use dietary and bladder diary to be filled out 2-4 days before your doctor’s appointment—or to simply monitor how your food and liquid intakes are effecting incontinent episodes. The UroLog is just one of the free brochures NAFC provides about incontinence, how your diet may affect your bladder and the basics of pelvic muscle exercises. Pelvic muscular atrophy happens as we age if we don’t keep the muscles in shape. An extra benefit of pelvic exercising is an enhanced sex life.

Speaking of pelvic muscle exercises: do your Kegels! This free, first line of defense against incontinence is as simple as flexing the muscles around the bladder, uterus and sphincter. You can do them while watching TV, while at work or anytime they cross your mind, just be sure your bladder is empty before you begin. Simply squeeze up as if trying to cease a flow of urine, hold for 5-10 seconds and gently release. Repeat ten times up to five times a day. The strengthening of these muscles should make it easier for you to contain urine. Here are some more helpful tips for enhanced daily living:

• The greatest fear of incontinent persons usually is being found out, either by odor or visible stain. There are many very effective products these days to take care of both of those issues.

• Adult diapers and briefs need not be bulky or noticeable anymore, even with heavy incontinence. Super absorbent core technology has given rise to a number of options that are discreet, comfortable and keep odors at bay. Measure your waist before purchasing, as the right fit goes a long way in both protection and comfort. Also be sure to choose products with the right amount of absorbency for your personal situation.
• Incontinence pads, liners and male guards can be used with regular underwear for light leaks or as supplemental protection in a diaper or adult brief. Flow through pads fill to capacity and then flow through to the next pad (stackable variety) then into the core of the protective diaper. You may be able to simply change the liner if the brief is still dry.
• There are a variety of cleansers on the market made especially to dissolve bodily waste and eliminate odor. If bedridden or with impaired mobility, perineal cleansers are gentle to the most fragile of skin and make maintaining personal hygiene easy for patient and caregiver alike.
• The disposal of diapers and other disposable incontinence products doesn’t require room spray anymore. The innovative Akrod Incontinence Disposal Pail is hands-free and seals off the continuous liner refill with every deposit.
• If you don’t have a high tech disposal system, not to worry. A number of room deodorizers, like this one from Medi-aire®, nicely rejuvenate the air.

• Keeping skin healthy is a big contributor to quality of life. Aside from using the proper cleansers, barrier creams moisturize and protect skin from incontinence while preventing irritations like diaper rash and chafing.
• If struggling with excess weight issues along with stress incontinence, losing weight can have asignificant positive impact on bladder control, not to mention the other health benefits of maintaining a healthy weight, nutritious diet and exercise (if able).
• Develop a restroom routine with increment goals. Try to hold off a little if you can to retrain your body how to wait. Keep a journal of how frequently you use the restroom and how often you don’t make it on time, this will help to make realistic schedules and goals. Be sure to have a protective pad or diaper in place while implementing, just in case.
• Protect furniture and bedding to reduce personal aggravation and your material investments. Underpads or bed pads come in lots of sizes and levels of absorbency and can be used discretely. For chairs and wheelchairs, pick an underpad with a pattern to hide stains while also enhancing the decor. Fitted protective bed sheets and zippered mattress covers come in all mattress sizes, including hospital beds, and will hold up through a multitude of washings. If using a bed pad between the sheets and mattress cover, remember that you’ll need to launder the sheets if a nighttime accident occurs, but your bed will be safe. Multi-layer strategies like these protect not just your bedding, but also enhance sleep quality and reduce the amount of attention needed by you or your caregiver in the morning.
• If you are a caregiver, be sensitive to your caree’s needs and feelings. Always make eye contact with and ask before putting your hands in their most personal of areas, whether changing a diaper or applying barrier cream.

Living with incontinence does not mean you can’t have a meaningful work life or take vacations!

Work/Volunteering: Incontinence affects many workers and volunteers around the world. It can detract from self-confidence and be distracting, especially if you’re spending a lot of time worrying that you’re in the bathroom too much or that someone will find out about your medical condition. First off, remember that you are not alone, you are still you–not your condition or its symptoms, and that having a medical problem does not take away from your worth as a person. Retraining yourself with the aforementioned bathroom schedule may take a little time, but it should eventually have a positive impact on your personal work environment. Use of the right products is also of utmost importance. Prevail Boxers make many men feel more comfortable, and they have a maximum absorbency core that is body close. Lady Dignity makes a “Feel Pretty” washable pink lace panty with flower accents that also features a moisture-resistant pouch in which to insert absorbent liners. If you’re still not comfortable, but you are comfortable with one of your managers or supervisors at work, you may find relief in talking to them openly; you’re likely to gain an ally who understands why you might need to use the restroom more often and who may be able to make accommodations in your work schedule.

Travel/Social Life: Whether going cross country, jetting off to another country or–very important–maintaining an active social life, plan ahead before leaving home. Isolation and incontinence have both been linked (together and on their own) to feelings of depression. Map out routes and find out where public bathrooms are along the way. Have extra briefs or pads on hand, as well as a change of clothes for peace of mind. Use the toilet before going out–double vacating is also a good idea. This is when you empty your bladder, stand up, then sit back down and vacate a second time. Often there are at least a few dribbles left, and the fewer dribbles the better, right? If taking a flight, choose an aisle seat near the facilities. Again, map out public toilets along your itinerary: shopping malls, restaurants, museums and other public attractions almost always provide an available bathroom.

Mary Otte is a staff writer for Parentgiving.com, a comprehensive website serving adults, seniors and their caregivers via thousands of products, hundreds of informative articles, timely news flashes and a wealth of practical tools that help allow persons to age well at home and maintain independence.

Join us for our weekly #treatdiarieschat on 2/12/13 for a detailed chat around this amazing resource and if you want to share your personal experience in a private diary, you are always welcome to join us atwww.treatmentdiaries.com.  Your diary…Shared healing!

Has there ever been a moment when you are talking with someone and you are focusing on what are going to say next rather than on what that person is saying?

Have you ever been nervous reaching out to make a connection with another human being or around clarifying your motives and intentions surrounding the connection?

Your nervous feelings are often times fueled by neediness:  A need for a certain response or outcome.  The actual anxiety around your rapport in situations like this often flows from fear…fear that you won’t get what you want from the rapport.

Neediness shuts down forward progress in rapport situations very quickly because the person communicating can pick up on this subconsciously which kicks in the fight, flight or freeze mode.

The next time you feel anxiety around a connection try this:

Pause and pray: Dear God grant me the grace to release my grip on all motives that do not serve the ultimate good for all concerned.  Help me to remember that I am OK with or without my desired outcome.  I am here to love first and foremost, then lead.

When you approach each person with an authentic desire for their ultimate good along with being unattached to the outcome you will create open communication & instant positive rapport.

Stress Solutions:

Here is a quick look into behind the scenes of your brain and your mental ship.

Basically, 90 % of your actions and responses in life flow from what is referred to in NLP as your SHIP: Strategies/Habits/Impulses/Programs (I will give you more insight into your SHIP in the near future).

10% of your conscious mind is driven by your WAR: Willpower/Analytics/Reason AND FOUR physical conditions/emotions that quickly paralyze your ability to use your WAR for your highest good and the good of those concerned:

• Hunger
• Anger
• Lonely
• Tired

Perhaps you are all too familiar with your HALT?

When you forget to give the appropriate attention and care to these four areas, you will notice that your mental SHIP begins to sink quickly: your ability to come up with creative solutions and maintain inner confidence and calm.

These weeks commit to the following tips to help keep your SHIP sailing in a positive direction:

• Pause when you feel angry and ask yourself a simple question: What fear is behind this anger?  Anger’s main fuel is fear: fear of not measuring up/fear of failure/fear of losing status, not gaining desired recognition, acknowledgment, approval, not being understood…once you identify what is fueling your anger you can apply EFT (SSU members check out the interview with the founder of EFT, Gary Craig, on the Coaching with the Coaches Program) and release the anger in your body.
• Feed your body small, healthy meals 5 times a day.  Cut back on gluten, sugar, dairy.
• Create positive social connections throughout your day.  Increase your quiet time before God and allow yourself to experience the presence of God’s love for you each day.
• It is essential to fuel your mitochondria with at least 7-8 hours of sleep each night.  This is the fuel behind each cell of your body…don’t skimp on this one.

Join us for our #treatdiarieschat 1/29/13 @8pm ET with Lauren Miller.

Lauren E Miller:

Google’s #1 stress relief expert receiving national recognition in Redbook, Ladies Home Journal, Family Circle, CNBC, MSNBC, Lifetime and Discovery along with the International Journal of Healing and Care. Lauren works with men and women worldwide empowering them with techniques and skills to live life without stress using one on one coaching, teleseminars, seminars and workshops.  Lauren is a Certified Master NLP (Neuro Linguistic Programming) Practitioner and holds her Advanced Training Certificate in EFT (Emotional Freedom Technique) two energy psychology modalities that lead to profound inner transformation. As an international motivational speaker, Lauren has shared the stage with some of today’s most inspirational speakers.  She has survived two of life’s top stressors at the same time: advanced cancer and divorce.  Her first book is an Amazon Best Seller and Indie Book Award Winner: Hearing His Whisper.  Her third book, an award winning International Best Seller: 99 Things You Wish You Knew Before Stressing Out!  Her fourth book will be released April 2013 by Career Press/New Page books.  She is the Founder of Stress Solutions University, an online stress relief video site equipping people with the mindset skills and physiological techniques needed to de-stress quickly.

www.laurenemiller.com

www.StressSolutionsUniversity.com

www.BeforeStressingOut.com

On January 15^th we’ll be participating in a “Tweet Chat” hosted by Treatment Diaries and we’re thrilled to have such an opportunity. The topic includes the emotional and social aspects of life with chronic illness, as well as exploring experiences with stigma or discrimination.  It’s a lot to cover, but these are areas that often don’t receive as much attention as people would like.  Here we try to shed some light on them:

Emotions

Last fall, we published a blog entry “Top 5 Things We Wish Every MD said” and these include regularly asking about stress and emotional well-being as these are integral to how we feel physically.  Most MDs acknowledge that while stress doesn’t cause most illnesses, it certainly isn’t going to help once you have a chronic condition.  It’s probably safe to say everyone experiences stress, and not all stress is bad.  It can be a great motivator.  But there is a tipping point where stress begins to deplete our mental and physical resources, which in turn can cause spikes in symptoms.  Now that we’ve covered that, the more important discussion point is what are you doing about your stress, and is it helping?

If you’re experiencing anxiety or depression symptoms, we know from the research that this leads to poorer health outcomes in people living with a medical condition.  When we’re diagnosed with a chronic illness, the focus is on fixing the physical body.  Western medicine is (finally) moving away from “Dualism,” or the idea that the mind and body are separate entities, and toward a more comprehensive bio-psycho-social-spiritual model.  Pay attention to how you’re doing mentally.  Feelings of sadness, worry, anger, frustration, and even helplessness are common and normal.  Keep tabs on your emotions by keeping a mood journal.  If you notice that negative is becoming the norm and you’re having a hard time overcoming it on your own, there are people out there to help.

If you’re looking for some help with negative emotions but aren’t quite ready to meet with a therapist, we have several “self-help” blog entries, including “Self-Talk and the Mean Lady” and “The What-Ifs?”

If you are thinking about it, we have “8 Questions to Ask Your Potential Therapist.”

Social Life

Illness can have an enormous impact on our social life.  One of the number one things we work with clients on is social isolation and withdrawal, and “getting back out there” so to speak.  How an illness impacts your social life has to do with a lot of things – its symptoms, its severity, and how people in your life deal with your condition.  How are your loved-ones reacting to your illness or current symptoms?  We know that people with good support systems do better overall.  Good doesn’t necessarily equal large, so the goal is quality first, quantity second.  Are there people in your network who aren’t helpful?  We also know that chronic illnesses are often stigmatized, and stigma comes in many forms.  From outright discrimination to more subtle, sometimes even well-meaning, comments like “what did you do this time to get sick?”

Some great sources of support are found online and there is an entire Healthcare Social Media movement taking place as we type.  Treatment Diaries is one of these places.   But we’ve also heard from some of our clients that what was once a positive influence in their lives has become a source of stress or worry.  We offer some tips on evaluating your online support system to make sure you’re getting the most out of it on our “Social Media and Chronic Illness” post.

Stigma

Stigma, or the devaluation of another person because of a perceived flaw, is a common issue for people living with chronic medical conditions.  It’s not just reserved for people with outwardly appearing, or visible, illnesses either.  Living with an invisible chronic illness also can come with stigma, and that can cause stress or worry about who to tell and who not to tell about your illness.  Dr. Taft’s doctoral dissertation was on stigma perceptions in people living with Inflammatory Bowel Disease, and how that related to their physical symptoms and emotional well-being.  We’ll spare you from having to read the whole thing, but the more stigma the person experienced the worse their IBD symptoms were and the more likely they were to be anxious or depressed.  These results are similar to the hundreds of other studies that have been done on other chronic conditions – both visible and invisible.

Telling people about your condition comes with risks, but the research shows that it’s better for you to disclose than to try to keep your condition hidden from everyone.  Treatment Diaries is such a great concept in that it allows you to anonymously post about your condition and may help you prepare to tell someone in your life if you haven’t already.  We also offer some advice on disclosure in our “Invisible Chronic Illness Awareness Week” post.

We would like to thank Treatment Diaries for the opportunity to connect with its members and discuss the psychological and social aspects of life with chronic medical illness.  We hope that we provided some useful information and gave some attention to some somewhat neglected areas in health care. If you have any questions or concerns, please contact us:  info@opbmed.com.

Bio:  Dr. Tiffany Taft and Stephanie Horgan, LCSW are 2 therapists who specialize in working with children and adults with chronic medical conditions.  We have dedicated our professional lives to helping those with chronic illnesses cope and lead as full and productive of lives as possible.  We also understand what it’s like to navigate life as a person with a chronic condition as we both live with Crohn’s disease.  Our practice is located in Oak Park, Illinois which is a near suburb of Chicago.  Please follow us on Facebook (facebook.com/opbmed) and Twitter (@OPBMed) as well as our blog (opbmed.blogspot.com).  Best of health to everyone!