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

Wednesday, March 27, 2013

Caregiving: Caring for the Caregiver

8:17 PM Posted by Stephanie Horgan ,

Caregiving is no easy job. People often say that motherhood is the hardest job on earth, and I have to believe that teachers, and caregivers are right up there in the ranks. Like the saying goes on an airplane, "if you’re travelling with passengers who need assistance, put your own mask on first before assisting other passengers.” That statement could not be more true when caring for a loved one, but often caregivers forgo taking care of themselves as they don't want to feel guilty or feel selfish. 

What is the reasoning for this? Well, if the caregiver doesn't take care of his/herself, there will be no one to take care of the patient! You will be unconscious, or even dead, from the fumes and burn out. There is a big difference between being selfish and self-care. Selfishness is acting only in your best interest and not others' interests. But self-care ultimately is in others' interests as you are the best version of yourself and able to give to others once you respect yourself enough to slow down and care for yourself. And let's face it, you cannot give of yourself if you have an empty tank. 

What are some basic tips for caregivers? Well, lets get b-a-s-i-c. How is your sleeping? How is your eating? When was the last time you went for a walk or exercised?  When do you have time scheduled for self-care? Do you have a self-care plan? Make a list of things that are comforting to you and post it where you can see it. Choose one of these things a day and be intentional about caring for yourself. A few examples include: pets, massage, a hobby, cooking, listening to music, your favorite TV show...All of the above questions are great places to start when you are faced with caregiving. To end, I am going to list some great caregiving resources from the web, and encourage you to comment on this post if you have other resources to add. We have these uploaded to our website which we continue to update as we hear of other valuable sites. 

Family Caregiver Alliance: Dedicated to those who care for a loved one with a chronic, disabling condition. Website includes multiple resources for information, education, services, research, and advocacy.
Family Caregiving 101: Resource for those caring for a loved one with a chronic condition Includes a message board.
Today's Caregiver: Website for Today's Caregiver magazine. Links to local resources, care tips, newsletters and more.
Well Spouse Association: The Well Spouse Association advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.

Friday, March 22, 2013

Emotion Focused Coping

5:17 AM Posted by Tiffany Taft , , , , ,
A couple weeks ago I wrote about To Treat or Not to Treat...a question that many people living with a chronic illness face when the effects of the treatment begin to outweigh its benefits.  In that post I mentioned something called Emotion-Focused Coping, which is one of many psychobabbly terms floating around in my brain.  So what the heck is that?

I think it's best to start with a different concept that I talk about a lot with my clients, something we all do every day of our lives:  problem solving.
Actual Church on Chicago's West Side.  Sadly, it closed.
Some problems are incredibly simple to find a solution for.  I had the problem of what type of K-cup to make for my coffee this morning: the Donut House regular or the Green Mountain English Toffee.  It (thankfully?) didn't take much mental energy or time for me to solve that problem.  Some problems are incredibly complex, with many sub-parts/problems, and several possible solutions.  Deciding where to move, buying a house, picking a college, handling an overly-demanding boss, removing friends from our lives who turn out to be toxic, etc.

Back to the psychobabble.

There are 3 main types of coping strategies that everyone uses:  Problem-focused coping, Emotion-focused coping, and Meaning-focused coping.  Today I'll talk about the first 2.

Problem-focused coping involves trying to take control of the situation (i.e. problem) and attempting to find a viable solution.  This type of coping involves gathering information, brainstorming possible solutions, evaluating your options, implementing your decision, and evaluating the results once you've done it.  The ultimate goal of problem-focused coping is to remove or change what is causing us stress.

Climbing the Bavarian Alps with a small child on his back and still looking good.
Applied to the chronic illness world, most people use problem-focused coping when they first get sick.  Here's a simple example:

  • Problem:  I wake up feeling like the Tin Man from Oz most mornings and my joints really hurt.
  • Gather information:  Check reputable online sources. Talk to friends, family.  
  • Possible solutions:  Ignore it.  Take some OTC pain killers. Try hot yoga. Call the doctor. Get a massage.
  • Pick one:  Call the doctor.
  • Implement:  Actually go to the doctor
  • Evaluate:  He gave me some orders for some tests to see what's going on.  At least I'll get some answers.
So what happens when a problem, or part of a problem, doesn't have a solution?  For many of us, it often feels like there has to be a solution, somewhere.  If I just keep trying, eventually I'm going to fix this problem.  Unfortunately that isn't always the case, and trying to solve problems without solutions only leads to more stress, frustration, anxiety, and depression.

Also known to cause frustration and depression.
Once we decide that a problem isn't solvable, we then turn to Emotion-Focused Coping.  This involves acceptance, seeking support from our friends and loved ones, seeing a therapist, using spirituality if that suits you, or using distraction techniques to put the source of your stress out of your mind.  The goal of this type of coping is to try to reduce negative feelings like anger, fear, worry, sadness, or embarrassment. 

Emotion-focused coping is generally thought of as being the less desirable coping strategy because it can look a lot like denial or that the person is just throwing in the towel.  

Be a thinker, not a stinker.
That's not the point at all, and the acceptance of a problem as being beyond our control to change can be quite freeing.  When used appropriately, emotion-focused coping can relieve the stress that problem-focused coping applied to an unsolvable problem can cause.

Back to applying this to the chronic illness world and the treatment issue.

A person living with Parkinson's disease has sought out all of the possible treatments available and continues to have symptoms, albeit less severe than before starting treatment. Some of the treatments she tried had horrible side effects which she couldn't handle, even though her symptoms were better than they are now.  She has received more than 1 opinion that there really aren't any other treatments available and this is the best she's going to feel.  To cope, she reaches out to her close friend who has been there for her the whole time to vent her frustrations, decides to take a vacation with her family, and devote her energy to raising money for the Michael J. Fox Foundation.  With all of this, she begins to accept that she cannot change her situation and acknowledges that she's done everything she can to get better.  She vows to enjoy her good days and take it easy during her not so good days.  I'll stop there as I'm getting into Meaning-focused coping territory.

To summarize, remember the 5 As of Emotion-Focused Coping:
  1. Acknowledge that the problem is not solvable
  2. Accept that you've done all you can
  3. Assess your feelings about the situation
  4. Ask others for emotional support
  5. Avert your attention from the problem to other outlets

Dr. T

Thursday, March 14, 2013

The Marketing of Hope

6:45 AM Posted by Tiffany Taft , ,
You may have heard the news report about Cancer Treatment Centers of America (CTCA) which exposes the organization's "cooking its statistical books" and reporting positive outcome data that far exceeds national averages.  In essence, CTCA may turn a person away if they have a poor prognosis which includes the elderly and the poor.  Those they do accept have better insurance coverage and the financial means to travel frequently to the center, which depending on geography may entail traveling great distances on a regular basis.  Of these patients, CTCA uses biased sampling in their practice reporting so that their outcomes look stellar, some say misleading patients, many of whom feel desperate for a cure.

Hope Marketing in action.
CTCA does a lot of things that we like, including integrated care that includes psychological support, spiritual support, and other complementary treatments such as acupuncture.  They take a holistic approach to care that may not be readily available in other medical settings, or if it is, covered by insurance.  Patients at CTCA report feeling extremely satisfied with treatment, that they are well cared for and aren't "just a number."  So they do good work, but all is not what it seems.

This is just one example of the marketing of hope.  It's been going on forever; at the turn of the 20th century cocaine was used for everything from colic to a "nervous disposition."  Heck, the father of psychology, Sigmund Freud, was a heavy cocaine user until he was 40.  

Sometimes cocaine is just cocaine.
We like to think we've evolved since those days, and of course in many ways we have.  But spurious claims still abound to cure the currently incurable, or provide relief where most other treatments have failed.  And with the advent of the internet, my goodness they're everywhere.  Then you have Aunt Joan, over Thanksgiving dinner, asking if you've seen that eating switchgrass clears up rheumatoid arthritis.  Or, as in my case, your  boss buying you a container of macaroons because he'd read that coconut is good for Crohn's disease.  

Side effects may include deliciousness and weight gain.
So what can you do to navigate all of this?  Here are a few suggestions.

Do a gut check.  The old adage "listen to your gut" does hold true most of the time.  If you've read about a miracle cure, whether it's in the form of a supplement, a diet, or an entire treatment institution and something doesn't feel right about it, there's probably a reason.

Do an emotions check.  What's driving your information-seeking?  Are you feeling pretty anxious or depressed about your diagnosis?  Do you feel kind of desperate?  We know when we're in these more emotionally vulnerable states, our ability to make sound decisions is reduced.  We're more likely to believe false information and fall for something called confirmation bias, which is seeking out only information that supports our current belief or perspective on a situation.  In other words, we're less likely to seek alternative explanations and information when we're operating under this bias.  We all do it to varying degrees, but when we're emotionally distressed this phenomenon can really take over.

Do the "advice to a friend" trick.  One way to evaluate a decision or thought process is to ask "If my good friend [insert name here] came to me with this idea, what would I say?"  Often times we have a better perspective on things when it comes to others than ourselves.  This simple exercise can help generate some alternative perspectives.

Talk to your physician.  Yes, some MDs are much more open to "alternative" treatments than others.  Depending on who your doctor is, he or she may not be very receptive to this conversation.  Regardless, it's important to keep your MD informed to any treatments that you decide to try, especially on your own.  Doctors rely on good data from patients to make decisions, and regardless of if he or she agrees about the use of a supplement or diet, not knowing all of the variables keeps them from having the full picture.  

Be mindful of the marketing of hope.  There are many people out there who have genuinely positive motives and, well, those who don't.  If it sounds too good to be true, it probably is.

Dr. T

Friday, March 8, 2013

Money Matters

7:37 PM Posted by Stephanie Horgan , ,
Anyone with a chronic illness knows what a toll the disease can take on a person going through treatment. The impact is widespread and far-reaching, touching every part of a patient, including their emotions, body, mind, loved ones, and finances. Today I decided to focus on the financial piece of dealing with a chronic illness and encourage those with one to do a little research (aka click the links below) and see if they qualify for some help. There are many non-profit organizations who are doing great work to try and help those managing chronic illness. Like the old McDonald’s jingle says, “you deserve a break today.” Why not see if there is one out there?

Help with medication bills, copays, and travel expenses. This non-profit organization helps people with various chronic illnesses. Check this link to see which diseases this fund are currently open to accepting. Examples include multiple sclerosis, lupus, pancreatic cancer, liver cancer, multiple myeloma, and more.

Partnership for Prescription Assistance
This is a website that lists 475 programs (public and private) that help with medication assistance, copay assistance, and free/low-cost clinics. The website is very comprehensive, and have direct links to each program. 

This is a non-profit organization that works directly with each pharmaceutical company's patient assistance program to assist you in the administrative process which the pharmaceutical companies require to receive their medication. They charge an $18 per prescription per month service fee as well as a yearly enrollment fee of $20. They manage all your applications and communicate with your doctors to make sure you get your meds on time. They offer assistance with 1500 brand name medications. Qualifications: You cannot be on Medicaid, and need to make less than $30,000 as a single person or $50,000 as a couple.

This is a non-profit organization that is a database with information for people who cannot afford their medication and health care costs. You can search by medication to see if there are any patient assistance programs through the pharmaceutical companies, and what the qualifications are to apply. They also list any college scholarships that are available by diagnosis.
This is only for US citizens or permanent residents who meet financial criteria and have one of the chronic or acute illnesses they have funding for. As of today, they are accepting patients with cystic fibrosis and multiple sclerosis. 
This database allows you to search by age, state, diagnosis, and the type of assistance needed (housing, transportation, meds, food, insurance premiums, academic scholarships, etc). They include currently: Autoimmune diseases, cancer, diabetes, digestive system disorders, kidney diseases, lung disease, mental health, pain, pediatric conditions and more! They provide potential scholarships for higher education, up to $3000 for those under the age of 25. Patient must have been in treatment within the last 5 years for a chronic or life-threatening illness and also enrolled full-time and maintain a 3.0 GPA.

Wednesday, March 6, 2013

To Treat or Not to Treat...

2:48 PM Posted by Tiffany Taft ,
I'm a big fan of memes, and I came across this one the other day via chronic illness cat:

Side effects may include...poignancy.
I'm going to guess that almost everyone who lives with a chronic medical illness has dealt with this problem at one point or another; the treatment feels worse than the symptoms.  I've certainly heard this from many of my clients over the years, and it leads to an internal struggle over the question "To treat or not to treat?"  This can be for a specific treatment option, or the use of pharmaceutical medications altogether versus a more "natural" route with diet, exercise, stress management, herbal supplements, or all of the above.

And then there's this conundrum:  maybe there's another medication you can take to help with treatment A's side effects?

Behold! The power of memes to get a point across.
Much of my research focuses on something called health related quality of life, and it is what it sounds like.  How much does your illness and its treatment affect your day-to-day activities?  Does your illness and/or treatment keep you from getting things done as you normally would?  Add to feelings of sadness or worry?  Limit your social interactions?  Are there potential serious side effects that keep you from taking a certain medication? It can feel pretty overwhelming to have to make these types of decisions. So what do you do?

[That drug has a black box] Warning, Will Robinson!
Unfortunately there is no easy, one-size-fits-all answer.  But there are a few things I can recommend.
  1. Evaluate your relationship with your physician.  Do you feel like a part of the treatment team or is he/she driving the ship?  We know that patients who are on board with their treatments are more likely to adhere to them, and this is related to open communication and a collaborative approach between you and your doctor.  If you don't feel good about your treatments, talk to your doctor.  If he/she isn't open to your concerns, consider getting another opinion.
  2. Weigh the pros and cons to each treatment option.  It's cliche, but it works.  Write them down and look over each column.  Then rate each pro and each con on a scale of 1 to 5 - 1 being very minor to 5 being very major.  Is one list longer than the other?  Does one contain more 5s than 1s?
  3. Purposefully Problem Solve.  If you're unhappy with your treatment, write down all the possible alternatives without judging any of your ideas.  Just brainstorm, putting everything on the table.  After you come up with your list, then evaluate each option in terms of how feasible it is and how acceptable you find it.  Remove items from the list that don't meet these criteria.  Once you've reduced your list, pick one and go with it.  Then, after some time, evaluate the results.  
This is a really tricky problem for people and what's best for one person may be very different from the next, even if they share the same medical diagnosis.  You can feel in control of your medical decisions and not captive to side effects or other worries that come from your treatments.  It may be a case of finding the lesser of the evils, so to speak.  If that's the case, and problem solving strategies are no longer needed, we shift to something we shrinks call "emotion focused coping" which basically means finding ways to weather the storm and acceptance of the situation.

More on that in a future blog post.

Dr. T