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

Monday, June 24, 2013

Support Groups

5:25 AM Posted by Tiffany Taft , ,
Sup·port  [suh-pawrt, -pohrt]  
verb (used with object)
  • to bear or hold up (a load, mass, structure, part, etc.); serve as a foundation for.
  • to sustain (a person, the mind, spirits, courage, etc.) under trial or affliction.
Group  [groop]  
noun
  • any collection or assemblage of persons or things; cluster; aggregation.
  • a number of persons or things ranged or considered together as being related in some way.
I....state your name...
Early on in my Crohn's diagnosis, I went to a support group.  I remember that it was run by a nice, older couple and the turnout was relatively small.  There were a few regulars and a few of us newbies in attendance and we shared our stories.  I remember hearing some pretty abysmal, and quite frankly scary, things about failed treatments, surgeries, and an overall pretty lousy quality of life  I left a bit disconcerted but decided I'd go back the following month to see if any new faces showed up, and if the first meeting was just a fluke in its negativity.  It was roughly the same crowd, except another woman around my age (mid 20s at the time) also came as someone new to the IBD world.  The vibe in the room was similar to the previous meeting, so I sought out the other woman after it was over to chat.  She shared in my feelings of unease about what we'd heard, and we both wondered without actually saying it if this was going to be our fate.  I went a third month and the woman I'd spoken to wasn't there; I never went back.

I've heard similar stories from clients who have sought out support groups to help them cope with their illness.  This is not to say that support groups can't be wonderful places where friendships are forged and people who would otherwise feel completely isolated and misunderstood are able to find some camaraderie. When clients ask me about whether they should seek out a support group, my answer is always yes with the caveat that it may take some time to find the right group, the best fit for them.  

Here are some things we know about support groups from our friends in the research world.  People who utilize chronic illness support groups:
  • Report a more positive outlook on life, greater satisfaction with the medical care, an increased sense of mastery, increased self-esteem, and reduced feelings of shame and isolation.
  • Experience less anxiety and depression, have fewer doctors visits, and the impact of their disease on work and social relationships is reduced.
  • State that they get positive benefits including discussing their illness with others, increasing their knowledge, adapting to life with their condition, learning about and seeking alternative coping strategies, increasing motivation, having a sense of belonging, establishing new friendships, and helping others.
  • Report less stress, greater family involvement, and better symptom control.
Well that all sounds awesome.  So what about my (and others') experience that wasn't so positive?  Can there be negative  effects from using a support group?  The answer is yes, there can.
  • Talking about your illness, or hearing about group members' experiences can stir up uncomfortable feelings.  Depending on who the group leader is (a patient, medical professional, or mental health professional), he or she may not be skilled enough to manage difficult situations. 
  • Being exposed to people who are worse-off that you are may increase anxiety or worry about your own condition.  Hearing from those who are in remission or are feeling better than you are may increase feelings of depression.
  • Sometimes 1 or 2 people in the support group may not respect boundaries or follow rules. This can especially be a problem in online formats that aren't moderated.  We've all come across a troll in our online lifetime.
  • There is risk of over-dependence on the group, especially for online formats.  If you're spending so much time online in a group forum that your outside contacts and responsibilities are suffering, there may be a problem.
  • Information that is shared in some groups may not be reliable.
The takeaway point of this?  Support groups have the potential to be great resources for you.  It's a matter of finding the right one, in the right format, and integrating it into your life in a healthy way.  

Have you tried a support group since being diagnosed with a chronic illness?  What has your experience been like?

Best,
Dr. T

Wednesday, June 19, 2013

Obesity as a Disease

7:00 AM Posted by Tiffany Taft , ,
I read in the news today that the American Medical Association has classified obesity as a disease, which has several public health ramifications.  The first being that physicians are now required to treat obesity like any other illness a patient may walk in with.  Historically, many doctors have avoided the conversation about a person's weight for a variety of reasons, including stigma toward people who are obese.


I've seen a lot of people struggling with weight issues.  While on internship at Jesse Brown VA Medical Center in Chicago, I helped teach the VA system's weight loss classes.  I learned quite a bit about why many people have a problem with maintaining a healthy weight by hearing the stories and seeing the struggles of the veterans I worked with.  Now, in our practice, I have clients who are considering bariatric surgery or who have gone under the knife and are now struggling with weight gain usually a few years post-op.  The themes of their stories are similar and highlight the complex biopsychosocial relationships that fuel obesity.  Here are some of the most common ones:

Membership to the Clean Plate Club.  Did you mom, dad, grandma, or all of the above tell you you had to clean your plate before you could get up from the table?  No matter how full you were, you were going to eat every last lima bean on your plate.  Many people carry this core value into adulthood.

Emotional eating.  I tend to eat when I'm bored.  It doesn't matter what the emotion is - joy, sadness, frustration - if you're eating when you're not really hungry, then it's probably emotions driving the ship to the kitchen.

The Yo-Yos.  The number of fad diets in this country is astounding.  A-stound-ing.  All promising to be the missing link to your weight loss goals.  Usually getting you to those goals in record time, even though the recommended pace for weight loss is 1-2 lbs per week.  People try one of these diets, have rapid results, feel AWESOME about it, then hit that inevitable plateau or have those inevitable cravings for the foods they've had to cut from their diet (more on that in the next point).  The weight comes back and usually 5-10 lbs are added on top of the original weight for good measure.  Thanks, hypothalamus.

A Case of the "Oh Screw Its."  Many diets fail when there's a special event, the holidays come around, or it's just been too long since you've had a bacon double cheeseburger or a plate of fettucine alfredo.  People on strict diets do so well at sticking at it that when something like this happens, a setback if you will, they decide that they might as well keep eating how they want for a while.

These things support the argument that being obese is the result of "lifestyle choices."  But that's not the whole picture.

Underneath these things is biology.  Thanks to our fancy technology, we know that the reward circuit in our brains is affected by things that make us feel good, including yummy food.  Structural changes happen when our brains are repeatedly exposed to substances that kick this reward circuit into high gear.  We typically think of this with people who are addicted to drugs, alcohol, or even gambling.


Recently scientists have found that the same structural changes occur in people who are obese, and that people who overeat may have a weaker circuit than those who eat less.  Unfortunately these changes in the brain remain in place even after a person loses weight, making it a constant struggle against anatomy to fight off cravings and maintain healthy eating habits.  So someone can have the best intentions to change their "lifestyle choices" but experience something similar to a heroin addict trying to come off the skag.  And I tell my clients with obesity that their fight is harder than the heroin addict because you can't abstain from food.  Not only do we need it to live, but it's such an enormous part of our social experience.

Like everything in life, obesity isn't dichotomous in its underpinnings (i.e. you either eat too much or you don't).  Yes, lifestyle choices, behavior, knowledge, and our upbringing influence what and how we eat.  But our bodies and brains react to these in a way that makes it harder to change, even with the best intentions.  Fad diets and reality shows (don't even get me started on The Biggest Loser) throw an added wrench into what is needed to reverse the obesity epidemic by setting unrealistic expectations, even pressures, on people to be successful.

Best,
Dr. T

Saturday, June 15, 2013

We're Moving!

6:19 AM Posted by Tiffany Taft ,
Wednesday I wrote about chronic illness anniversaries.  Well, Steph and I are approaching another anniversary.  On August 1st, 2012 we opened the doors of Oak Park Behavioral Medicine in a 1-room office in a historic walk-up building in Oak Park, Illinois.  Hence the name.  See how clever we are?
We're (almost) 1 !!
It's kind of hard to believe a year has gone by already.  It's even more of a surprise that we've outgrown our space need to relocate.  We've found a great new location in downtown Oak Park on a cozy brick street named Marion.  Starting August 1st, we will see clients at our new location and say farewell to our current office on Harrison street.



Other than all that is great about being located above a bakery with a view of the Chicago skyline, we're across the street from the CTA Green Line (Harlem Ave stop) and Metra Union Pacific West Line (Oak Park stop).  For those who drive, we're about 1 mile north of I-290, and a municipal parking lot is located across the street with a second lot 1 block west.  

I'll stop with the marketing schtick and leave you with some fun facts about our new location:
  • Originally called the Dunlop Brothers Bank Building, our new home was built in 1887, just 2 years before Frank Lloyd Wright constructed his house about 1/2 a mile north.  There are 25 FLW structures, including the Unity Temple, nearby.
  • Ernest Hemingway was born in 1899 and raised in an Oak Park home not far from our new office.
  • Edgar Rice Burroughs, creator of Tarzan and several science fiction series, wrote 22 of his Tarzan books between 1912 and 1919 in Oak Park.
  • Dan Castellaneta, aka Homer Simpson, graduated from Oak Park River Forest High School.
We'll keep everyone posted as we get closer to our move-in date.  Thanks for your continued support!

Best,
Dr. T

Wednesday, June 12, 2013

Anniversaries

6:26 AM Posted by Tiffany Taft , ,
Recently I passed my 11 year anniversary with Crohn's disease, which is some time around the end of May. Early on, I knew the exact date.  I want to say it's May 15th, 2002 but I can't be sure any more.  Is this a sign of my continued cognitive decline as I approach my 40s?  Or has the disease become less salient to my identity?  I'd like to think the latter since I don't feel 37, but who knows.

Proof that I'm 37. And if you recognize this, you also may be old.
We follow a lot of people with chronic illness in the socialmediaverse, and I often see people posting about the anniversary of their diagnosis.  If you think about it, getting a diagnosis of something that will never go completely away for the rest of your life is kind of a big deal.  I might even venture to say on  par with a birthday or a marriage.

Side note:  just think how nice it would be if the chronic illness cure rate was as high as the divorce rate in the United States.

So how do you recognize the anniversary of your diagnosis?

For me, it's been an evolution of my thoughts and feelings.  My first year was wrought with questions of if the diagnosis was even accurate and what seemed like endless testing and retesting.  The next few years the anniversary brought about a lot of anger and sadness because I had to have surgery and was blowing through medications to the point I was teetering on having nothing left to try.  For those with IBD, I was in one of the original Humira clinical trials at the University of Chicago after I had an infusion reaction to Remicade.  Once my disease was better controlled, my emotions faded and it became more of something in the back of my mind rather than the front.  I think this is when the meaning of the anniversary began to change from something negative to something more neutral and less emotionally charged.  In the past 2.5 years I've been in complete remission and med free, thanks to a pregnancy and whatever other forces are at play, and I find myself unable to remember when the anniversary even is.  I think that's a good thing.

What I've done to Crohn's.  In my mind.
A few weeks ago I wrote about one of my psychology heroes, Viktor Frankl, and his book about the search for meaning in life.  I often ask my clients this question when there's something bothering them, whether it's a comment someone made, a situation with a friend or family member, or simply a nagging thought that keeps them up at 2 a.m.

"What does that mean to you?"  

I ask people the same question when they want me to interpret a dream.  I'm not trying to be an a%#hole, or pull some psychologist-as-brain-ninja move on them.  Rather, what I think bears little relevance; it's all about the meaning to that person.  So something to think about if your illness anniversary is approaching is what does this day mean to me?   If you've had it for a while, how has that meaning changed over time?  You might be surprised by what you discover.  Other than the number 42.

Best,
Dr. T

Wednesday, June 5, 2013

Doc In the Box

4:16 PM Posted by Tiffany Taft , ,
I came across an April 2013 article about Walgreens drug store clinics starting to see patients with common chronic illnesses, such as diabetes or asthma.  I don't know about where you live, but around here Walgreens seem to be sprouting up everywhere, and many of them offer Take Care clinic services.  I've used the one down the street from my house to get a flu shot, but beyond that I have no personal experience with their medical practice.

Typically staffed by nurse practitioners (or advanced practice nurses), walk-in clinics - or doc-in-the-box as one of my former physician colleagues liked to call them - are becoming much more readily accessible in recent years.  There are many arguments for and against this medical paradigm, and the inclusion of chronic illness in addition to the typical acute conditions these clinics cater to opens up a whole new debate.

Or an advanced practice nurse.

Is it a good idea to manage a chronic illness at Walgreens? (Or any other walk-in clinic?)

In the article, family physicians argue against this primarily because of the relationship that is formed between the primary care doc and his/her patients.  I had to pause there for a second and think about my relationship with my PCP, who I've been going to since I was about 23 years old and came down with a nasty case of mono.  I don't see him too regularly, I'd say less than once a year.  I like him and he knows me, but do we have an actual relationship?  Our visits are usually pretty quick, definitely under 15 minutes.  If I added up all of the face-to-face time I've spent with him over the past decade and a half, it may equate to 3 hours.  There is a lot of research evidence to support the importance of this relationship, especially in managing chronic conditions. Do I have a relationship with him?  Not really.

Would switching to the Walgreens clinic down the street compromise my care for things I go to my PCP for?  I'm guessing it wouldn't.  Plus, it'd be orders more convenient as my physician is downtown, or a 45 minute train ride away.  But would I go to Walgreens for my Crohn's disease management?

I doubt they include Crohn's on their current list of chronic conditions they manage, but what if they did in the future?  Assuming my symptoms were well controlled, what would be wrong with going to that clinic for a vitamin B12 shot or to have my blood work checked?  I definitely feel like I have a relationship with my gastroenterologist, much more so than my PCP.  So I think going to the doc-in-the-box for Crohn's would be a little weird.  Part of me doesn't think it's a terrible idea, either.

I should also note that I have health insurance so I can afford to go to see the top-notch specialists in Chicago.  For those not as fortunate, maybe these clinics can offer a more reasonably priced alternative especially if the other option is to not go at all because you can't afford it; or to wait until you need to go to the emergency room because things are so out of control.  For people in Chicago without insurance, that means going to Cook County hospital (remember the TV show "ER"?) and waiting up to 12 hours, or going to a private hospital and hoping you can get the bills waived.  They've rebuilt Cook County since I went to the ER with a friend back in the late 1990s, but back then you literally took a number and waited for it to be called.  Like at the bakery.


What do you think about the use of walk in clinics for managing chronic illness?  Is this a good idea that fills in gaps in health care and offers convenient, lower-cost options or something that should be discouraged for more traditional models of care?  Would you use one for your illness?

Best,
Dr. T