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

Thursday, July 31, 2014

The Illusion of Control

5:50 AM Posted by Tiffany Taft , , , ,
I think almost everyone wants to feel in control of their life.  When we feel out of control it naturally can lead to an array of negative emotions - anxiety, irritability, sadness, panic, or depression to name a few.  Being diagnosed with a chronic medical illness throws the idea of "control" into a bit of a tailspin.  Our body has decided that it's going to do something against the status quo, and sets a new standard of operations, if you will, that doesn't jive with how things should be.  We do our best to reverse this tide, but it's like the disease does everything it can to get back to what it thinks is the new normal.  What I like to call the Dr. Ian Malcolm effect.

In the chronic illness world, the word "control" comes up a lot, doesn't it?

Take this medication to control your symptoms.
Is your disease under control, yet?
You've got to fight to control your [insert disease here].
Why can't I get this flare up under control?

This is a pretty complicated topic that can't be addressed in one blog entry.  So today I wanted to discuss how the need to control ones condition can become a problem in the context of chronic digestive illnesses and food.

Via The New Yorker
I've seen hundreds of people living with these conditions.  For some, there is a very clear relationship between food and their symptoms.  A person with Celiac disease gets very ill if they eat foods that contain gluten.  Someone with eosinophilic gastritis has an increase in inflammation in their stomach when they eat eggs or soy (if those are their triggers).  But for other conditions, like Irritable Bowel Syndrome or Inflammatory Bowel Disease, it's not so clear most of the time.

If I had to guess, 98% of the people I've worked with have reported that they've tried to use diet or food elimination to control their symptoms.  It makes sense, really.  My digestive system is giving me trouble so food must be part of the problem.  Now, which foods are the problem?  This is where it gets a little hairy, and unfortunately can really wear on people's mental well-being.  I've met people who've had IBS for decades and are still trying to figure out the right dietary combination to control their illness.  It doesn't help that the internet is loaded with diets for these conditions, some even claiming to be a miracle cure.

One of the first questions I ask someone who says they've cut a certain food or foods from their diet is if they noticed that every single time they ate that food that they had symptoms.  The answer is overwhelmingly something like this:

No, actually. There are times I can eat it and I feel fine.  It doesn't make any sense, but I still think it's best to avoid it.

When only 1 or 2 foods are eliminated, the impact of this choice on quality of life tends to be minimal.  Early on in my Crohn's Disease tenure, I couldn't eat popcorn without experiencing significant pain.  So I stopped eating it for about 4 years (that made going to the movies fun).  But if popcorn turned into 20 foods, especially common ones, or entire classes of foods like dairy or gluten, eating would become slightly more challenging.

A lot of the time challenging isn't really the way people describe it.  It's more like anxiety producing, socially limiting, and depressing.  If that were the case, I'd certainly want to be sure that the ratio of symptom flare up to the food I stopped eating was 1:1, not 25:1.

As I said, food makes sense when dealing with digestive symptoms.  It's something I can control.  Unfortunately, a lot of the time symptoms remain as a person's diet becomes more limited.  They become afraid to eat out at a restaurant, a friend's house, or a party so they stop going because they can't control what's in the food they may eat.  They feel embarrassed by special requests they may need to make, frustrated by their lack of food options, and resentful that they can't just eat like everyone else.  Yet their symptoms aren't under control.  Eating can even become disordered - we're not talking about anorexia nervosa or bulimia, but the need to find the right foods can become so severe that the person's quality of life is horrible and their nutritional status suffers.  A colleague of mine once had a client who only ate white foods but continued to experience chronic symptoms.  Think about that.

When I talk about this with clients, the theme is ultimately the need to feel in control of what feels like an uncontrollable situation.  Included in our treatment goals are to help them resume as normal of eating as possible by letting go of food as a means to be in control, without feeling anxious that they'll lose control over their illness.  As other triggers to symptoms are addressed, along with some acceptance that sometimes the disease's actions just aren't going to make sense, people are able to let go of controlling food more and more.  And eating a turkey sandwich becomes normal again.

Dr. Taft

Thursday, July 24, 2014

PTSD & Chronic Illness

4:14 PM Posted by Tiffany Taft , , ,
Most people know posttraumatic stress disorder (PTSD) as being commonly seen in war veterans, survivors of a natural disaster, sexual abuse survivors, motor vehicle accidents, etc. Little public attention however, is given to PTSD in chronic illness (CI) patients.  Our summer intern, Jessica Naftaly, writes about how experiencing a chronic illness can trigger PTSD in some people.

Signs of PTSD 
Unexpected, sudden, traumatic events related to a CI can be scary. According to the Diagnostic & Statistical Manual of Mental Disorders, 5th Edition (DSM-V), a few of these events include waking up while being under anesthesia; traumatic experience in the ICU; anaphylactic shock; and traumatic surgery. Not everyone who experiences these events has PTSD, however it is important to keep the signs of PTSD in mind after a traumatic event.

These signs after a traumatic event include:

• Unwanted memories/dreams/flashbacks involving the event
• Psychological/physical reactions to stimuli that remind you of the event
• Avoidance of things that remind you of the event
• Change in thinking patterns or mood after the event
• Change in behavior after the event such as impulsivity.

These symptoms have to last more than 1 month and affect your level of functioning. If this is the case for you, please seek professional help and talk to your doctor.

Do CI Patients Really Get PTSD?
Yes. Not only have I heard stories from my CI friends who have PTSD, but also a study that looked at PTSD prevalence in multiple cases (stroke, heart surgery, gynecology procedures, etc) found the highest PTSD rates in patients with HIV (30-35%) and patients in the intensive care unit (ICU) (14-59%). Interestingly, the majority of symptoms presented varied based in the CI.

Another research study that involved cancer patients found that a majority of the subjects in the study showed PTSD symptoms but were not severe enough to receive a PTSD diagnosis. There is also research on PTSD in multiple sclerosis patients. The final study stated that 50% of chronically ill college students showed symptoms of PTSD; but again the symptoms were not frequent or severe enough for a PTSD diagnosis.

Why do Some CI patients have PTSD but others don’t?
Factors that exist BEFORE the event occurs can predispose someone to PTSD. These factors may include:

• Personality
• Mental health diagnoses
• Stressful life events
• Medical diagnoses

Factors AFTER the event can also predispose someone to PTSD. These may include:

• Quality of social support
Coping skills
• Lack of relationship with medical staff

The researchers also found that these risk factors for PTSD varied depending on the CI. Across the board, the seriousness/severity of the medical illness was not predictive of PTSD. The seriousness/severity of treatments and medical care however, were correlated with PTSD.

Why is awareness of PTSD in CI patients important?
CI patients who also have PTSD are less likely to be compliant to medical treatment. Research shows that heart attack patients who have PTSD were less likely to take their medications because taking the medication reminded the patients of their heart attack, which triggered the PTSD. These patients may also not want to return for follow up appointments with the same medical team.

There are also physical symptoms surrounding a CI patient with PTSD. PTSD patients have more physical symptoms after the traumatic event. The research suggests that this may be due to an increased awareness of one’s pain. HIV PTSD patients had lower immune function ability. PTSD can also increase mortality. Finally, the increase in physical pain leads to a patient using healthcare more often, which then increase the cost of medical care.

Doctors may not always pay attention to the signs of PTSD after a medically related traumatic event. It is important for medical professionals to watch out for the signs of PTSD and to inform patients of those signs in case PTSD develops. If you are experiencing PTSD or PTSD symptoms please talk to your doctor or contact a mental health professional.

Has your doctor ever talked about PTSD in relation to chronic illness?

Monday, July 21, 2014

In the Spotlight: Myasthenia Gravis

1:50 PM Posted by Stephanie Horgan , ,
I'm proud to say that this is the 160th blog post for Oak Park Behavioral Medicine. This post is also the next part of our "Rare Disease of the Month" blogathon for 2014. This month, we highlight Myasthenia Gravis. This disease is not easy to pronounce (the pronunciation is "my-us-THEE-nee-uh GRAY-vis"). The disease is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control and is caused by a breakdown in the communication between nerves and muscles.

Myasthemia Gravis (MG) has a Latin and Greek origin and literally means "grave muscle weakness." MG is an autoimmune neuromuscular disease that can affect any voluntary muscle. It most frequently affects muscles that control eye and eyelid movement, facial expression, and swallowing. The onset of the disorder may be sudden and symptoms often are not immediately recognized as myasthenia gravis. Without getting too technical, the immune system of a person with MG makes abnormal antibodies against the receptor sites of the neuromuscular junction. These sites require a chemical called acetylcholine to activate them, but with MG patients, this does not happen and thus muscle weakness occurs.

How Common is It?
It is estimated that about 20 out of every 100,000 people in the United States have MG. It most commonly affects women under 40 and men over 60 years old, but it can occur at any age.  MG is not directly inherited nor is it contagious.

What about Diagnosis and Treatment?
Just like other chronic illnesses, the symptoms of MG can vary greatly. Common symptoms include drooping of one or both eyelids, blurred or double vision, an unstable or waddling gait, a change in facial expression, difficulty swallowing, shortness of breath, impaired speech, and weakness is the arms, hands, fingers, legs, and neck.

Muscle weakness is a characteristic of many other disorders. Thus, diagnois includes a review of medical history and a full neurological exam. Blood tests can identify if there are abnormal levels of two antibodies (acetylcholine and anti-MuSK) which MG patients can sometimes experience. EMG (electromyography) studies also can provide support for the diagnosis.

The good news is that, in general, MG can be controlled with medicine. Medications include anticholinesterase agents, which help improve neuromuscular transmission and increase muscle strength. Corticosteroids and immunosuppressive drugs are also used to improve muscle strength by suppressing the production of abnormal antibodies.

Surgery is another option for some patients with MG. A thymectomy (surgical removal of the thymus gland) is needed when there is a tumor of the thymus gland. This occurs in 10-15% of patients with MG. This surgery frequently lessens the severity of the MG weakness after some months. In some people, the weakness may completely disappear and be in remission. The degree to which the thymectomy helps varies with each patient.

Finally, plasma exchange may be useful in the treatment of MG also. This procedure removes the abnormal antibodies from the plasma of the blood. The improvement in muscle strength may be striking, but is usually short-lived, since production of the abnormal antibodies continues. When this treatment is used, it may require repeated exchanges.

What About the Social and Emotional Impact?

Many emotions may arise when dealing with an illness like MG. Feelings of anger and frustration are typical, since as the body can't do what the patient wants it to do. Anxiety about when the next crisis or flare will arise is common as well. Self-esteem can be affected due to the visibility of symptoms of MG (such as drooping eye lids, weight gain, weak facial muscles, and slurred speech). These symptoms can cause patients to avoid social situations and sometimes cause significant life style changes as activities must be limited. A person may feel that his or her identity is changing because they may not be able to do the things that once gave them purpose. It is important to acknowledge the emotions of chronic illness, but also identify thoughts the patient is having about their body that may be unhelpful. Therapy can be a helpful place to do this, as well as meeting with another patient who has MG and who has been on a similar journey.

The Mayo Clinic suggests doing several things to help improve your quality of life if you have MG. Simple things like adjusting your eating routine to when you have good muscle strength or eating smaller meals throughout the day may help. It can be helpful to wear an eye patch if you have double vision, although this can mpact on the person with MG socially and emotionally.

The illness does not only affects the patient. Family members at home may need to help out when MG symptoms are flaring up. A support group can be a place where the patient can process the frustrations of living with MG and the family can gain support from meeting others who are supporting MG patients. It is also important to find ways to relax; stress is thought to worsen the condition. Find ways to slow down and build in time to rest. Continue to do the activities that bring you joy, within your limitations, and remember to listen to your body. Consider finding a walk in your area to raise awareness and funds for those affected by MG.

Helpful Resources:
Myasthenia Gravis Foundation of America, Inc.
National Institute of Neurological Disorders and Stroke
American Autoimmune Related Diseases Association 

Monday, July 14, 2014

Humor and Chronic Illness

12:30 PM Posted by Stephanie Horgan , , ,
Anyone remember the show Candid Camera? I was an avid viewer as a kid, and once I was diagnosed with a chronic illness, I took advantage of their "Laughter Therapy" program. They send four videotapes of Candid Camera shows (hopefully DVDs now) one-by-one to patients with illnesses who can use a laugh. Now-a-days, there are so many options to watch comedy on-demand, whether it is on your DVR or streaming from a source like Netflix. Regardless of where you get your comedy, there is something therapeutic about laughing.

Recently I came across an article about how patients and doctors are drawing upon their experiences and writing comics about what they have been through. One artist who works in graphic medicine, Emily Haworth-Booth described her work eloquently. She said, "You can also manipulate and change something on the page, more easily than something that’s inside your own body. You can draw the pain, as a big black cloud perhaps, and then you can draw it again, but smaller, and smaller again, until it’s gone." Comic strips can be a way to name what has happened to you, and to bring healing through creating, reading, and sharing through art. There was also a recent conference at Johns Hopkins where the increasing and varied use of graphic arts was the focus. The power of laughter and comics in reaching patients is getting more and more attention for good reason.

When working with cancer patients, the topics in therapy can get pretty intense. I have found that being able to balance the intensity with laughter lets me build tremendous rapport with patients. Even the American Cancer Society website suggests laughter can ease symptoms. They say, "Available scientific evidence does not support humor as an effective treatment for cancer or any other disease; however, laughter has many benefits, including positive physical changes and an overall sense of well-being. One study found the use of humor led to an increase in pain tolerance. It is thought laughter causes the release of special neurotransmitter substances in the brain called endorphins that help control pain. Another study found that neuroendocrine and stress-related hormones decreased during episodes of laughter. These findings provide support for the claim that humor can relieve stress. More studies are needed to clarify the impact of laughter on health."

Here at Oak Park Behavioral Medicine, we enjoy a good laugh, so please feel free to send along any chronic illness stories, comics, or quotes, that we can add to our collections. And now go get laughing!

Thursday, July 3, 2014

Let's Chat About Being "Eclectic"

5:43 AM Posted by Tiffany Taft , , , ,
One of the projects our summer intern is working on for us is compiling a list therapists who we can refer people to who aren't a good fit for our practice, whether it's the type of therapy they need (i.e. couples) or distance/scheduling issues.  Our goal is to have a nice list of therapists in our area as well as outside of Chicago that we can reference and give a few names of potential providers.  You may be thinking, can't they just get that from their insurance company?  Or a website like Psychology Today?

The short answer is yes, they can.

But who am I to write about short answers?

I gave our intern a few criteria to screen out therapists to contact: 1) they must specifically state they work with patients with chronic medical illness and/or chronic pain; 2) they cannot describe their therapy style as "eclectic."  I cannot stand the use of that word to describe an approach to psychotherapy, and I think when you're shopping around for a therapist you should pause when you see that in their profile.

Let's just start with a simple definition of the word Eclectic:  deriving ideas, style, or taste from a broad and diverse range of sources.  There were some ancient philosophers who described themselves this way, picking and choosing from several schools of thought rather than adhering to one.  Sounds like a good idea, doesn't it?  In many ways, being eclectic is a good idea.  To a point.  But to define your approach to the science of psychology in this way is a problem.

In my graduate school program, we were required to learn the 4 major theories to psychotherapy, each in its own dedicated semester-long course.  These included Family Systems theory, Psychodynamic theory, Cognitive Behavioral theory, and Existential/Humanisitc theory.  After these introductory courses, we then chose which one fit our fledgling professional style best.  I chose Cognitive Behavioral and went on to complete additional coursework, while those who chose Family Systems went along a different path.  Our 3rd year we had to present a case as part of our passing the program, and we had to conceptualize the case from our chosen psychological theory.  Eclecticism wasn't an option.

If you ask me today, I say I'm a cognitive-behavioral therapist.  Do I sometimes borrow from the other 3 theoretical orientations in my day-to-day practice?  Sure.  To ignore family systems theory when working with a teenager or existential issues when someone is facing end-of-life decisions would be incredibly short sighted.  But I would never describe myself as eclectic as some of my peers do.

Wondering if psychology is unique to the use of this term, I poked around the Google to see if it's used in similar fields such as medicine or physical therapy, or in any profession.  I did find that in the late 1800s to early 1900s, "eclectic medicine" was a thing where herbal remedies and other practices borrowed from Native Americans were used.  The last eclectic medical school closed in 1939.  Other than a practice with eclectic in the name, I couldn't find much in physical therapy; same for veterinary medicine.  It does show up in fields like music, architecture, and art.

So why do many of my colleagues describe themselves this way?  And how many of them truly have expertise in all 4 major areas of psychological theory?  I'd never work with a client who was interested in psychodynamic therapy because I'm not good at it.  Sure, I took 1 semester-long course on it but I spent the remaining 6.5 years of training doing therapy from a CBT approach.  My supervisors were all CBT therapists.  It'd be unethical, in my opinion, to take on someone looking to explore their unconscious processes that derive from their childhood experiences.  Technically, I could do it.  My training is sufficient, on paper anyway; but I would refer them to someone who was an expert on that treatment.

There's a saying an old boss of mine, a physician, used to use - "Jack of all trades, master of none."

Perhaps that resonated with me.  When I looked for a gastroenterologist for myself, I sought one with expertise in Crohn's disease.  Most people prefer a physician who is confident in their understanding of, and is up to date on, the disease they're going to the doctor to treat.  Can they be eclectic in their approach to treatment in that they're open to trying medications, dietary treatments, and stress management?  I'd prefer it.  But I expect them to also have a solid foundation from which they operate, based on the latest evidence-based treatment and theory of inflammatory bowel disease.

As a therapist, I think it's only right to be able to say the same thing to people who trust me with the care of their mental well-being.  Defining myself as an eclectic therapist doesn't impart that.

Dr. T.