If you're living with a chronic illness, you're in the right place.

Sunday, September 30, 2012

Tech News

3:36 PM Posted by Stephanie Horgan ,

Last week, an article came out featuring UCLA's medical center and a web-based program they use with their IBD patients. It is a state of the art program where patients can download an app for tablets and smartphones to help monitor their illness. They started the trial on IBD patients, but plan on expanding it to other chronic illnesses such as heart failure, diabetes, rheumatoid arthritis and chronic obstructive pulmonary disease (COPD). 

In a culture like ours, which is moving more and more towards embracing technology, it seems as if this medical center is ahead of the curve. Their program is called "Home Care" and "has several modules for patient support. It incorporates a tool called My Academy that enables patients to take tests to gauge their knowledge about their condition. The program also teaches the patients about medication that treats their ailments. Patients answer questions in an interactive app on the iPad about their disease activities, quality of life and work productivity. Doctors and nurses then receive the answers in real time. As educated patients take control of their conditions by using the mobile tool, they could use the health care system less, he suggested. After reviewing patients' answers, doctors may adjust patients' medication, schedule appointments or conduct remote counseling using the iPad's FaceTime application. The Home Care application also incorporates My Coach, a tool that provides help or support for anxiety, isolation and depression, which can result from having a chronic condition. Another module, called My Work, assesses work productivity." These are all exciting new directions health care may move in, and we are interested in being a part of that. One of the main reasons we have a blog and facebook page for our practice is to raise awareness as well as empower patients with knowledge about their illness and ways to cope with it. 

What about you? Has your doctor embraced technology? How easy it is to get ahold of your doctor? Are there any apps that you find helpful when trying to track your quality of life? 

Thursday, September 27, 2012

Who Needs Sleep?

11:24 AM Posted by Tiffany Taft ,

Insomnia is a common side effect to having a chronic illness.  Heck, insomnia is common in general.  Whether it's having trouble falling asleep, staying asleep, or waking up too early, if you're not getting the sleep you need it can have really detrimental effects on your health.  There is no ideal amount of time we should sleep as every person is different.  The question is how much sleep do you need to feel rested when you wake up?  If you've been dealing with insomnia, there are probably some behaviors you can change to help.

The technical term for sleep habits is "sleep hygiene," which sounds like something you should be doing in the shower versus in bed.  Here are some things to think about and evaluate if you're having a hard time sleeping:

  • No caffeine after 3 p.m.  That's right, none.  As a recovering caffeine junkie from my grad school days, I appreciate how hard this might be if you're a regular coffee/soda/tea/monster/red bull drinker.  And 90% of Americans are regular consumers of caffeine!  But the fact is, caffeine takes a while to get out of your system, and its half-life - or the amount of time for the levels of caffeine in  your body to reduce by 50% - varies widely depending on a host of factors from your age to what medications you take.
  • Your bed is for sleeping only.  No TV, no laptop, no reading, no working, no smartphone.  But you can have sex.  This is a hard one for people, but we know that doing other activities in bed other than sleeping and sex causes the bedroom to be conditioned in our brains for these more alert activities.  Rather than unwinding when your head hits the pillow, your brain remains or becomes activated making it harder to fall asleep.  If reading or watching TV makes you sleepy (and for me TV is about as good as Ambien), do this in the living room or somewhere other than in bed.  When you feel sufficiently drowsy, move to your bedroom.
  • Keep a consistent sleep schedule.  This is especially true for wake-up times.  You've probably read that you can't catch up on sleep by sleeping in on the weekends or your days off, but it sure feels nice to stay in bed late, doesn't it?  Unfortunately having an erratic sleep cycle can contribute to insomnia.  If you're having trouble sleeping, set a wake time for 2 weeks and stick to it.  So if you decide that 6:30 a.m. is when you'll get up, it doesn't matter if you go to bed at 10 p.m. or 2 a.m.  Wake up at 6:30.
  • Hide the clock.  One of the most frustrating things about insomnia is looking at the clock, expecting it to be much later than it is, and realizing you've been asleep for 7 minutes instead of 3 hours.  The frustration and worry we develop about not sleeping only adds to our insomnia.  Hiding our bedroom clocks can help with this.  Turn it around, put a shirt over it.  And don't look at it.
  • No laying in bed awake.  This is the most important rule of them all.  If you find yourself awake in bed for more than 15-20 minutes, get up and go do something that will make you sleepy.  The more mind-numbingly boring the better.  I've had people go read the instructions to their washing machine or the phone book (when they still made phone books).  Avoid activities that involve screens because light triggers the brain to wake up.  Only return to bed when you feel tired.  If you find yourself still laying in bed awake after 20 minutes, get up again.  This goes back to the conditioning I mentioned earlier.  We can actually condition our brains to think laying in bed = time to think about everything.

When I tell people these rules, most people want to inflict some sort of bodily harm on me.  It's not to say that you can never watch TV in bed again, or you'll always have to wake up at 6:30 on a Saturday, but if you're dealing with insomnia these rules apply.  Try them for 2 weeks, which is about as long as it usually takes to reset our sleep habits.  If the insomnia continues, there are more advanced strategies that you can try with the help of a professional.

Wednesday, September 26, 2012

Research Hits from the Interwebz

1:07 PM Posted by Tiffany Taft , ,
Here are some of our favorite stories from the research world this week:

  • Researchers in the UK have identified a potential link between overuse of antibiotics in childhood and later development of inflammatory bowel disease.  Published in the journal PediatricsRead more...
  • Understanding the psychology behind portion sizes, which are a leading contributor to America's obesity epidemic.  How much we expect a certain food to fill us up can influence how much we eat - or overeat.  Read more...
  • A 2005 theory about the causes of Alzheimer's Disease, which some are calling "Type 3 Diabetes," is gaining momentum as new evidence becomes available linking poor diet and this debilitating disease.  Read more... 
  • The American Psychological Association (APA) discusses the importance of psychotherapy as a first line treatment for depression rather than going straight to anti-depressant medications.  Read more...
  • Keeping with the Alzheimer's-and-healthy-habits theme, researchers have found that a combination of regular exercise and melatonin may slow the development of the disease in mice.  Read more...
  • The obesity rate in African Americans is 50% higher than in Whites in the U.S.  One reason may be the role chronic stress plays.  Read more...
  • And from the oddities file, remember kids - hydrate or die.  Teen hospitalized for dehydration after playing XBOX for 4 straight days. Read more...

Monday, September 24, 2012

Monday Metacognition #2

10:36 AM Posted by Tiffany Taft ,

Today's term is Dichotomous Thinking.  The tendency to see things from an "all or none," "black or white" perspective.  It's either this or it's that, there's nothing really in between.

I think we can all see this on the grand stage of politics or other hot-topic issues that we'll refrain from bringing here.  I'm right, you're wrong, there's no room for discussion.  Period.  We can also see how this way of thinking can cause a lot of problems, especially when we use it to evaluate ourselves.

Here's an example:

Shannon was diagnosed with Ulcerative Colitis this past summer.  Her doctor told her that her case was relatively mild and that by following the treatment plan of daily medications, stress reduction and watching her diet she would be able to keep her symptoms under control.  Shannon is highly motivated to stay well so she made sure to follow her doctor's recommendations to the T.  She took her medication, began exercising to reduce her stress and cut high fat foods from her diet since these triggered her UC symptoms.  The treatment worked and her UC seemed to be in remission.  One weekend she went out of town with some friends and forgot to pack her medication.  Since she was feeling well, she didn't think it was that big of a deal.  She also "cheated" on her diet and had hot wings and beer for dinner on Saturday.  When she got home she experienced some abdominal pain and had to use the bathroom several times.  This lasted for a few days, even though she started taking her medication again and went back to a healthy diet.

Shannon thought to herself, "I really screwed up and now my UC is flaring.  I've completely blown my treatment."

The dichotomous trap here is Shannon either follows her treatment plan perfectly or she's failing.  Rather than place herself somewhere in between, she has chosen an extreme view of her situation.

There are several follow-up thoughts that she could have that take her down very different emotional paths.

"I'm never going to get my UC under control." (Catastrophic thinking)

versus

"I just screwed up, it'll be fine once I get back into my routine." (Alternative, "Grey area" explanation)

So how do we identify when we're doing this to ourselves?  Look for use of exaggerated words in your thinking. Is there a less-extreme way to interpret the situation, like in Shannon's case?  Jot these down and evaluate them against your original thought.

Next week:  Personalization

Wednesday, September 19, 2012

Top 5 Things We Wish Every MD Said

2:25 PM Posted by Tiffany Taft , ,

Physicians are busy people.  They're often constrained by practice rules outlined by insurance companies to keep appointments short and patients moving.  So many times there isn't time to cover everything, and patients leave the exam room with unanswered questions or concerns.  It's an unfortunate fact of life of today's medical world.  But there are some things that I, as a health psychologist, wish physicians would say to their patients.  Here are my top 5, from the home office in Oak Park Illinois:

  1. What do you do to de-stress?
    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?
  2. How's your support from family and friends?
    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?"
  3. What do you think of your current medications?
    Recently we've shifted from using the term "compliance" when it comes to patients taking their medications to "adherence."  It has less of a dictatorship ring to it.  Unfortunately medication adherence is an ongoing issue, and as C. Everett Koop wisely stated "Medications don't work in patients who don't take them."  The World Health Organization (WHO) estimates that up to 50% of patients are non-adherent at some point and this equates to over $290 billion a year in costs in the U.S. alone.  There are many reasons why this happens, and we'll dedicate another blog entry to this topic.  But one key discussion point to have with your MD is how much do you buy into the treatment?  Do the benefits outweigh the costs (like side effects, actual costs, etc.)?
  4. How are you doing emotionally?
    Seems like a no-brainer question, but it's one that MDs may shy away from because of concerns of opening the floodgates and then not having the time, or skills, to address it.  Nevertheless, it's an important area to discuss if you're feeling overwhelmed.  We know that people who have anxiety or depression on top of a chronic illness have poorer outcomes, and that treating anxiety or depression symptoms can reverse these negative impacts.
  5. I think seeing a therapist might help you - and no, I don't think you're "crazy."
    There's a movement to integrate psychology into medicine that's slowly catching steam.  A barrier to this is the stigma that mental illness carries in our society, and the notion that if my MD is referring me to a shrink, he/she must think I'm crazy.  More often than not, this isn't the case at all.  Rather your doctor understands the role that mental-health plays in physical health and appreciates what seeing a specially trained therapist can do.  

Tuesday, September 18, 2012

Monday Metacognition #1

8:03 AM Posted by Tiffany Taft ,
Metacognition:  The act of thinking about ones own thinking.  Sounds pretty simple, doesn't it?  But how often are we truly aware of our thought processes versus setting ourselves on autopilot and going along for the ride?  The human brain is only quiet for a few seconds at a time.  It is always processing information, moving memories into long-term storage, scanning the environment for threats, and testing what we see or hear against our own experiences and biases.


It's usually during periods of down time, like when we're trying to fall asleep, when we become very aware of the thoughts that are streaming through our head, often just beyond our awareness.  Our thinking becomes automatic, which is a good thing most of the time.  But sometimes automatic thinking can be negative and wreak havoc on your life.

Today marks our first entry into our soon-to-be-award-winning series about Metacognition, where we'll discuss why we think the way we do, common thinking traps that most people fall into from time to time, and how we think affects how we feel and how we behave.

I should add a caveat that we are much more likely to remember the times when we were accurate in our thinking that when we were wrong.  This is what keeps the thinking traps going.  I'm going to remember the 1 or 2 times I was right, gosh darn it, and ignore the 87 times I was inaccurate.  It's normal and self-preserving to do so.  This is why Metacognition is harder than it sounds!

Disclaimer - Yes, today is Tuesday.  I can only blame myself and an old laptop that was almost victim to being thrown out of a 2nd story window for the delay. 

First up:  Mind Reading

People often joke with me about my training and my ability to read people's minds because I'm a psychologist.  Could you imagine?  All I can think about is Mel Gibson in "What Women Want" and, well, I'd rather not think about that.  However, one of the common thinking traps people fall into is Mind Reading.  

How might this play out for people with a chronic illness?  I often hear from clients that they are concerned about what another person thinks about their condition or its symptoms.  I remember a client with IBS who was so afraid to go to parties at her friends' apartments because of the chance that she may have to use the bathroom, which would lead to a series of events that would cause people at the party to think badly about her.  They would KNOW she was in the bathroom, going #2, and they would think she was a freak because it took her so long.  Or gross.  Or unattractive.  Her use of Mind Reading (along with other traps that we'll get into later on) led her to turn down invitations over and over again, which led to social isolation and depression.  Even though she couldn't tell me one time that someone actually said something negative to her, she was convinced that they thought it.

Think about times you were convinced that someone in your life was thinking a certain way about you.  Were your thoughts accurate?  What problems did Mind Reading cause?

Next Week: Dichotomous Thinking

Wednesday, September 12, 2012

Invisible Chronic Illness Awareness- Part 2: FMLA

8:28 AM Posted by Stephanie Horgan , ,
Invisible Chronic Illness Awareness Week- Part 2: FMLA

Hello everyone! This is my first entry on our blog, and I figured it was a great week to begin my blogging adventure, as we are promoting awareness of invisible chronic illnesses. I wanted to start by saying that I hope this blog serves as a place for people to come and find encouragement and wisdom as they travel the journey with chronic illness. It is not an easy road, nor one that many talk about, as so many patients suffer silently. We hope that our practice can provide a safe place for people to be able to talk freely about their experience- the hope, the grief, the ups, the downs...all of it.

To add to what Tiffany was saying about disclosure, I have noticed that it is helpful for patients to have a specific plan when talking to their employers about their illness. In a work setting, there may sometimes be no choice but to disclose something about your illness, as there are often continued, numerous absences that need explanation. There are various ways of explaining your illness, but I often suggest pursuing FMLA (Family and Medical Leave Act) protection before doing so. FMLA is a law that applies to businesses with over 50 employees in Illinois, and gives you a right to a medical leave if you are an eligible employee with a serious health condition that makes you unable to perform the functions of your job. A medical leave is also granted to an eligible employee who must care for a parent, spouse, or child with a serious health condition. Employees are given rights to return to work after the leave period. This can be for a set amount of time, or also on an intermittent basis, which is what I have found most helpful for patients with chronic illness. Often there are periods of flares and remissions which are unpredictable, and require days off here and there. If you think that FMLA would be helpful to you, check with your company's Human Resources department and see what the protocol is for filing for FMLA. Most likely it will require a signature from your medical physician which treats your chronic illness, as well as a signature from your boss at work, confirming that this was approved. When asking for your boss' signature, feel free to share as little or as much as you feel comfortable doing. As it says on the Illinois Legal Aid website, "As more people find out about your health condition, the chance for job discrimination increases." As a clinician, I recommend not sharing excessively with your boss, but instead telling more details (as you feel appropriate) with your coworkers who may be affected by your absences, and letting them know how much you appreciate their understanding and support. Please feel free to add any other tips to this column, as we want to help people with chronic illnesses keep their job secure in this tough economy. 

Best,
Stephanie 

Monday, September 10, 2012

Invisible Chronic Illness Awareness Week

1:13 PM Posted by Tiffany Taft , ,

For the millions of people affected by an invisible illness, there comes the time where they must decide how to disclose that they are sick, to whom, and in what level of detail.  It seems like it should be a relatively straight forward task:  open mouth, speak words "I have [insert illness name here]."  But often, disclosing your chronic illness status feels like navigating a minefield.  What we do know from the research is that people who disclose their illness to others report significantly less psychological distress and have better illness outcomes than people who choose to keep their illness identity completely hidden.  Easier said than done, Dr. Taft.  

I think the mantra of disclosure is "Easy Does It."  Think about the people in your life and who you trust to share this information with; this will likely be on a continuum of "Absolutely" to "No Way."  This can be tricky with people like your boss, teachers, professors, co-workers, or other people who are in positions of authority (or position to influence those of authority) over you.  Before you disclose here, read up on your particular illness and its protections under the Americans with Disabilities Act (ADA).

Think about what you're going to say and your answers to possible questions that you may get asked once you do disclose.  Less is more when starting the disclosure process.  Tell them why you want them to know about your illness. Only you know your audience and how much detail they may be open to knowing about your experiences.  For those you're closest with, it's likely safer to go into more detail than an acquaintance that may have noticed that you're not feeling well very much the past few months.

Then think about how you're going to say it.  Generally, speaking in a calm rather than overly-dramatic way will lead the other person to be more receptive to what you're telling them.  However, don't hide your feelings or feel that you cannot express how important of an issue this is for you. 

Think about how you're going to respond to their reactions.  You may find yourself having to educate the person about your condition.  You may need to provide them with emotional support as they process your news.  Much of this will depend on your relationship with the person before you disclosed.  

Finally, ask them to be there for you.  Ask them to keep what you've told them in confidence.  Tell them that their listening so you can talk about your illness is the biggest help they can offer you (this is especially important for people who go into advice overdrive).  

Remember, we can plan until the cows come home about how a particular scenario is going to play out, but so often the scene in our minds differs, sometimes dramatically, from reality.  Some people will handle your news well, others may not.  You cannot control this, but you can prepare yourself mentally and emotionally.  

If you have some disclosure stories or tips to share, please do so in the comments section below.  We'd love to learn from you!

Thursday, September 6, 2012

The Social Media of Chronic Illness

11:42 AM Posted by Tiffany Taft , ,
Many of my clients have said they either currently use or have used an online support community for their condition.  And there is certainly no shortage of chronic illness support groups, message boards, or  (ahem) blogs.  A quick Google search brings back 2.2 million hits for blogs alone, each one documenting the personal experiences and opinions of its owner.  For a little levity, there is even a Facebook page dedicated to a "Chronic Illness Cat" meme.

So how does one sift through this mountain of information and determine which sites are helpful and which may be not so helpful?  Here are 5 questions to ask yourself when using social media as a support mechanism:

  1. Who is the source of this information?  There is a common saying about opinions and everyone having one.  Even within the medical community, there are debates about what is the best course of action in managing a particular illness.  This is a good thing as it advances the science and leads to new discoveries.  If we all agreed, nobody would see the need to change anything.  With that being said, the internet is rife with misinformation - sometimes with malicious intent to exploit those who are vulnerable, sometimes by well-meaning people who are simply not informed.  When taking in information, do your homework on its legitimacy via reputable websites such as webmd, the mayo clinic, the NIH, or emedicine.  If it sounds too good to be true (e.g. simply eating strawberries every day will cure your ulcerative colitis), it probably is.

  2. How much time am I spending on here?  Did you just look at the clock, it's 2:30 in the morning and you forgot to eat dinner because you've been logged in since you walked in the door after work?  It's not uncommon to spend a lot of time on a site when you find a group of people who you can relate to and feel safe sharing your experiences.  You may not have talked to anyone else outside of your computer screen about your condition, or at least in any real detail.  So it feels good to get it out, to feel understood and not alone.  That being said, pay attention to how much time you are spending online as your source of support.  If it is interfering with your life so that you're not getting things done or are withdrawing socially, it may be time to cut back.  Allow yourself an hour or two each day and stick to this.  Set a timer that will go off, and when it does log off, get up and find another enjoyable activity to engage in.

  3. How do I feel after I've logged off?  The internet is a unique place where you're surrounded by strangers yet you're sharing private details about your health.  On top of that, traditional communication cues, such as tone of voice or body language, simply don't exist.  Take a quick minute to screen your body and mind after you've been online to see how you feel, making note of any negative feelings you may be having.  If you find more often than not that you're feeling tense, angry, or frightened after visiting a community you may want to consider another source of support.

  4. What are the people in the group like?  Research has shown that while online support groups are valuable in helping people cope with their illness, we have also found that people who are more distressed tend to spend more time using online support.  Is there a balance of experiences in the group of people who may be managing their condition rather well or are even in remission versus those who are really ill or struggling emotionally to cope?  And where do you fall on this continuum?  It is always good to have a range of experiences to learn from to keep everything in perspective.

  5. Is Dr. Google trumping my regular doctor?  Physicians today have had to adjust to working with well-informed patients who often come to their visits with the latest research or recommendations about a particular treatment.  This has led to an evolution in the doctor-patient relationship that I think is quite important and a positive step in fostering a collaboration rather than the more traditional expert-subordinate roles of medicine's past.  However, when the opinions of those on the internet begins to trump that of your doctor and you find yourself modifying your disease management without first discussing it with your physician, it's time to reassess the role the group is playing in how you think about your condition.

Wednesday, September 5, 2012

Another Day, Another Blog

12:09 PM Posted by Tiffany Taft
So...we've started a blog.  It's funny how I've written a dissertation and several peer-reviewed publications yet I'm feeling a bit daunted by this task.  Then again, blogs need to be interesting...candid...and contain information that you, our reader, can take in, process, and deem valuable in a matter of seconds.  No pressure.

I should first introduce myself and my colleague, Stephanie, and what we're trying to do.  We both recently completed our graduate studies, she in Social Work and I in Clinical Psychology, and decided to start a private practice dedicated to helping people affected by a chronic physical illness.  Our specific focus is on those diagnosed with chronic gastrointestinal (GI) illness, such as inflammatory bowel disease, irritable bowel syndrome, or eosinophilic GI diseases.  But we welcome all people with all chronic conditions, as well as those who may be struggling with their weight or considering bariatric surgery.

Both Stephanie and I have been active volunteers with the Crohn's & Colitis Foundation of America via their outreach programs such as Camp Oasis for kids with IBD.  It was here, at a week-long camp that we both love in Waupaca, Wisconsin that we crafted our plans to start our practice.  This finally came to fruition this summer and we couldn't be more excited to get working.  Unfortunately, there aren't many mental health providers who can say they are experts in these conditions and this leaves a gap in care for so many struggling every day.  We are proud to say we are helping to close this gap by extending our services to the Chicagoland area.

Stephanie and I work with all ages of patients.  We also work with the patients' parents and families because as you well know, the person with the illness touches the lives of everyone in the household.

Before starting our practice, I spent the past 8 years researching the psychological and social effects of life with a chronic illness at Northwestern University Feinberg School of Medicine and am a leading expert in GI psychology.  If you're interested, you can read a summary of my research here.  While I truly enjoy the science of psychology, it is the individual relationships with my clients that makes this job so fulfilling.  Stephanie continues to work with patients affected by cancer at a local hospital on the north shore while conducting research.  We share our commitment to guiding our client's treatment by the most up-to-date, scientifically backed methods available.

Our plan is to use this space to share important information about life with a chronic illness and resources that help navigating the healthcare landscape a bit easier.  So thank you for reading; even more thanks if you've subscribed to us.  If you have questions about anything on our blog or about our practice, do not hesitate to email us.

Best,

Dr. Taft