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

Tuesday, August 27, 2013

Food Allergy in the Spotlight

9:09 AM Posted by Tiffany Taft , ,
Food allergies.  They seem to be everywhere, lately.  We hear most about peanut allergies, but we humans can be allergic to pretty much any food.   Some foods are more likely to cause allergies, which are often referred to as the "Top 8":  Dairy, Eggs, Soy, Wheat/Gluten, Peanuts, Tree Nuts, Fish, and Shellfish.  Food allergies are on the rise in the US, but the answer to the logical question "Why?" remains elusive.  One raging debate is about how we produce food in this country, en masse, to feed the masses quickly and cheaply.  Another, related debate, is the use of genetically modified crops (GMOs) that go along with the more potent pesticides, herbicides, and fungicides we use to minimize crop losses.  I'm not going to get into all of that today.  Rather, talk a bit about the social and psychological impact of food allergies.


But first, announcements!

The Discovery Channel will air a documentary, “An Emerging Epidemic: Food Allergies in America,” on Saturday September 7 at 8 a.m. ET/PT and September 21 at 8 a.m. ET/PT. The organization Food Allergy Research & Education (FARE) teamed up with the Discovery Channel to explore what it's like to live with food allergies, awareness campaigns, and current research into food allergy treatments.  Even if you don't have food allergies, or have a friend or family member with them, I think it'd be a good idea to check this out because the odds that you'll encounter someone with food allergies in your lifetime are pretty high.  According to FARE, 1 in 13 kids have a food allergy and an estimated 15 million people in the US are affected.

Several months ago, I wrote a guest post for a great blog It's an Itchy Little World where I touched on some of the struggles parents of kids with food allergies face.  For example, 41% report significant caregiver stress, 49% state that food allergy reduces the family’s social activities, and 34% report reduced school attendance. In my research on this topic, I came across Food Allergy Fun, a blog with cartoons that depict stigma and, well, some of the dumb things people say to people with food allergies.  Here are a few of my favorites, if favorites is the right term for something like this.

Wait, you still have this?  Many people have a hard time wrapping their brains around chronic illness, including food allergies.  There are many theories as to why this is the case, and individual differences exist, but I would say about 95.87% of people I see report something along the lines of this:


Blame, either from the self or others.  Patients, or parents of kid-patients, may ask what they did (or didn't do) to bring on food allergies.  It doesn't help that many people seem to be experts on the subject, especially with such easy access to Dr. Google:

Yeah, well I have this.  I believe that most people mean well, and try to relate to what people living with food allergies are going through.  But comparisons can make people feel unheard and that their situation is being minimized.  I call this empathy gone wrong:


These are just a few examples of what life with food allergies can be like. I'm looking forward to seeing how the Discovery documentary addresses some of these issues and helps turn our attention away from Miley.

Best,
Dr. T

Wednesday, August 21, 2013

Osto-drama

12:57 PM Posted by Stephanie Horgan , ,


Recently there was a big hub-bub about ostomies in the news. Not an everyday occurrence, right? So I figured I would educate our readers, just in case they hadn't heard about it. As someone currently with an ostomy, I am forever grateful to the life it allows me to live and the freedom it gives me to do all the things I love. Without it, I was miserable, and life is a 180 now. 


Now for the drama: July 5th, the Cincinnati news reported that the local police department was using pictures of people with ostomies to attempt to “scare” teens from gun violence. Their logic was that if we show kids a potential consequence from getting a gunshot wound,  that they might just “think about their lifestyle.”  The kicker was the statement by the Lieutenant office who stated about potential gun violence injuries: "You're not killed, but you're walking around with a colostomy bag and that's just not the way to get a girl's attention by limping down Warsaw Avenue with a colostomy bag." Outrage from the ostomy community ensued, and rightfully so, as the police department is contributing to the stigma and shame our culture has around bodily functions. In various social media outlets, people in the gastrointestinal community expressed their anger and disgust at the insensitivity of the Cincinnati initiative, and demanded an apology. One brave and beautiful Ostomate’s blog made it to the Huffington Post, reminding people that over 500,000 ostomates in the United States alone. Its something a lot of people are dealing with, but maybe not talking about. Another report on CNN, featured an opinion piece on how the inadvertent discrimination impacts ostomates and the chance for education to our culture as a whole.  


As a way to raise awareness after these articles came out, people started posting pictures of themselves with their ostomy on social media and used hashtags such as #AnOstomyIsNotATragedy and #YouHaveTheRightToRemainSexy. It was a beautiful statement to the world about how people with ostomies can live full, vibrant lives and maintain their attractiveness. 

A Change.org petition was started to demand an apology from the police department as well. And what do you know, with all the attention that it drew, produced action from the police department. A formal apology letter was sent out to ensure that the public knew the Cincinnati police department was truly sorry and would not do it again. 


So what do we have to gain from this? Well, in my opinion, this was a great opportunity to “come out of the closet” to you all, and to a few friends who I don’t talk to about my ostomy. An ostomy can be an unusual conversational topic, but the media coverage was a real help. I hope that we can continue to use these opportunities for educational purposes, in both the online and real worlds we all live in.

Monday, August 19, 2013

Bucket Lists

5:59 AM Posted by Tiffany Taft , , , ,
Ever since Morgan Freeman and Jack Nicholson got together and made that movie The Bucket List it seems like most everyone has used the phrase when talking about things to get done in life before we die.  I know I'm guilty of doing so, and because I'm kind of OCD-ish I speak of things on my bucket list categorically.  Like, I have a restaurant bucket list, a travel bucket list, and a professional bucket list.  I'm sure there are others, but you get the point. There's even a website, www.bucketlist.org, to help you track the 10,000 things you should do before you die.  Really.

Morgan, can you believe how our movie title has become a bit cliche?
This summer I ventured into a new professional territory when I took a part-time consulting job with a company that contracts psychologists with skilled nursing and assisted living facilities.  They were looking for someone to cover for another psychologist going on maternity leave.  Prior to taking on this new role of geropsychologist, I'd only worked with a handful of people over the age of 65 and none were in need of assisted living, let alone skilled care.  My training was minimal and more of an orientation to the 5 sites I'd be traveling to.  I received a crash course in Medicare rules and went on my way.  Now, 3 months have passed and this week is my last and I've been mulling over my experience.


First, there's a wide range of quality in terms of the facilities out there.  Nobody thinks that a nursing home is a happy place, but some are really, really nice (and have the price tags to prove it) with private rooms and dining rooms that rival a cruise ship.  Some are old, with crowded rooms of 3 or 4 residents, with food you wouldn't feed your cat, and cater more to the seriously mentally ill than the elderly.  The staff is primarily non-White, caring for primarily white residents, at least in the Chicago suburbs where I was going.  Hours are long and difficult, salaries are offensively low, thus turnover is high and the residents notice when their favorite aide is no longer there.  There's actually an academic article published in 1994 in the journal Gerontologist called "Nursing Home Aides:  Saints or Monsters?"  Like all things in life, it's not that dichotomous and most operated somewhere in the middle.

Many places put the residents with greater needs on different floors, so being moved to that floor becomes a fear for those who live in the more independent areas. One of the nicer places I covered was run by nuns, one of which gets around on a motorized scooter.  Psychological services are valued differently, and most of the residents who I met had never seen a therapist in their younger years. I'm a good 40-50 years younger than them, so what the hell do I know compared to them?

I've met so many people in the past 3 months.  The vast majority were somebody's grandparent, often great-grandparent.  I saw a WWII veteran who survived Pearl Harbor; a 90 year old woman who could yodel; a former marine who ran marathons until he was 80; an endearing, tiny 92 year old woman who contracted pneumonia in July - and beat it.  Issues ranged from the existential to almost high school-like with cliques and interpersonal fighting.  Some residents were almost too far into their dementia to help, so my role was more supportive and perhaps helped pass the time and gave them someone to talk to, even though they wouldn't remember who I was at the next visit.  Others were dealing with substance abuse, domestic violence, or being in the caregiver role to their spouse of 60 years.


Interacting with the residents of these facilities brings about such a mix of emotions.  It's hard to see them sitting along the hallways in their wheelchairs, staring off into space, unable to move until a staff member comes by to push them back to their room.  Some are incredibly lonely, either having very little family or family who visits very little.  One image that makes my  heart sink is that of women with baby dolls who they hold in their laps and coddle like it was their own child. Other residents have wonderful stories to tell about their lives, and are able to maintain a positive outlook.  The staff tries to keep up with the demands of basic care while offering activities to keep residents busy.  A whole lot of bingo goes on, here.  One place had a residential government, complete with an election for each position from President to Secretary where residents made posters and hung them from the walls.  Some really get into the activities, while others scoffed at the idea of arts and crafts.

I never asked any of them about their bucket lists and how many items had been crossed off.  And if you asked me before this summer if I'd ever thought working with the elderly was on my bucket list, I'd honestly have to say no, it wasn't.  But now that I'm reaching for my pen to check it off, I'm happy to say it was.

Best,
Dr. T

Friday, August 9, 2013

Acceptance: Part 2

In my last post, I wrote about Acceptance as it relates to life with a chronic illness.  I apologize for the delayed follow-up, Steph and I moved our Oak Park office at the end of July and, well, you all know how moving goes.


I talk a lot about acceptance with my clients, and it can be a tricky topic to broach.  Think about it.  Here I am, captain psychology, suggesting to people with sometimes horrible illnesses to accept their situation rather than try to fix it.  I should clarify that acceptance doesn't mean not seeking the best care and treatments, but being able to determine when you've done all that you can to regain as much health as possible versus continuing to fight.

Fight.  We hear that word a lot in the chronic illness world.  It's a pretty strong theme in our culture in the United States, and when we're diagnosed with something like cancer, lupus, or rheumatoid arthritis we're automatically transformed into Rocky Balboa.

Yo, medicaaaatttioooon!

We do know that acceptance can be helpful, but there are some caveats.  Acceptance of your illness can lead to better and more informed decisions about treatments, greater adherence to those treatments, and improved outcomes like symptom control and quality of life.  People who accept their condition tend to be more open about it with others, even educating others or advocating for themselves and their peers.  

Acceptance isn't always a good thing, and can actually have some pretty negative experiences in the wrong context.  It can lead to depression, demoralization, and even suicidal thinking.  We obviously don't want that to happen, which is why when I talk to people about acceptance I tread lightly.

For acceptance to be a positive experience, we need adequate resources and support to assist us with all the problems that come with having an illness.  If we feel like we have family members who understand, friends we can vent to, and a good doctor-patient relationship acceptance is much more likely to be a good thing.  Our experience with stigma, or negative attitudes of others about our illness, also plays a role.  What really matters here isn't if we hear people say crappy things about us or our illness, but rather how much we internalize or believe these statements to be true.  People who internalize stigmatizing attitudes toward their own illness generally don't do well with acceptance.  If you feel like you don't have adequate support or think pretty negatively about your illness, you'll want to make changes here before trying the exercise below.

Ok, enough talking Dr. Taft - how do I work on accepting my illness?  Grab a pen and some paper to write these things down and get started:

Evaluate your  thoughts about your illness.  What memories, worries, fears, self-criticisms, or other unhelpful thoughts do you dwell on, or get “caught up” in? What thoughts do you allow to hold you back, push you around or bring you down?

Evaluate your behaviors related to being sick.  What are you currently doing that keeps you stuck; wastes your time or money; drains your energy; restricts your life; impacts negatively on your health, work or relationships; or worsens your problems?

Evaluate your feelings about your condition.  What emotions, feelings, urges, impulses, or sensations do you fight with, avoid, suppress, try to get rid of, get overwhelmed or pushed around by, or otherwise struggle with?

Evaluate your challenges.   What important situations, activities, people or places are you avoiding or staying away from? What have you quit, withdrawn from, dropped out of? What do you keep “putting off” until later?

The key word in each of those points above is Evaluate.  This isn't simply the act of writing these things down, but thinking about each one critically.  I like to call this playing scientist, or lawyer - whichever you prefer.

  • Are there alternative explanations or viewpoints for your thoughts?  
  • Would your argument hold up in court?  Or to peer review?
  • Are there other behaviors that you can be doing that will help you get un-stuck?  These don't have to be pie-in-the-sky, but rather should be small, attainable things you can do every day.
  • Instead of fighting off negative emotions, let them happen for a little while then try to change them by evaluating your thoughts and behaviors and making changes.
  • Stay present.  Thinking too much about the past and the "should haves" can lead to sadness and depression.  Thinking too much about the future and the "what ifs" makes us anxious.  Focus on today.
  • Go easy on yourself.  On paper, these things may seem like common sense, but they're really pretty hard to implement.  
I'll leave you with some words from Marty McFly, I mean Michael J. Fox

“My happiness grows in direct proportion to my acceptance,
and in inverse proportion to my expectations.” 

Best,
Dr. T