Communicating about your Illness

I just read an article about programs at The Gathering Place in Cleveland, Ohio that help children cope when a family member has cancer.  The Gathering Place has a variety of good programs that help not only the person with cancer, but also the whole family.  When one person in a family becomes ill, it affects every member of the family, and changes the dynamics of the family as a whole.  This particular article was about cancer, but this is true for any illness or injury.
If you have chronic pain or illness, you have likely noticed that people treat you differently.  Maybe they tiptoe around you, or leave you out of the loop, or think you are faking.  There are many other possible ways that you may be treated by others who aren't sure how to relate to you now.  This article included helpful suggestions for  how to discuss your cancer with your children (and other people).  These suggestions, with a few minor changes, are good advice for any of us, in relating to our loved ones about our illness.  Here are nine suggestions from the article, the parentheses are my additions :
1.  Use the word "cancer" (or Fibromyalgia, or Sjogren's Syndrome, or whatever it is you have.  Their point is that cancer is a very emotion-laden word, using it will help to normalize it.  My point is that by using the name of whatever you have you will help to educate people about it.)
2.  Don't try to hide it. (If it affects you, it affects them.  Trying to hide what you are going through leaves them out of your loop.)
3.  Be specific about which body part(s) is (are) affected.
4.  Ask them what they think cancer (Fibromyalgia, etc.) is.  This gives you a chance to correct any misconceptions.)
5.  Explain what will happen next.
6.  Tell them there will be good days and bad days.
7.  Reinforce that you still love them.
8.  Don't make promises you may not be able to keep.
9.  Don't limit it to one conversation.
I would add a few other thoughts:  Keep the doors of communication open.  Let others express their thoughts and feelings about what is going on.  Let them know you recognize that your illness impacts their lives, not just your own.  Express your appreciation of their support and for all they do for you.  The key is not to dwell on your illness, but don't be secretive about it, either.
The article was titled 'Helping children cope with a loved one's cancer', published in the spring 2012 issue of Balanced Living magazine. 

   

Communicating With Loved (and Liked) Ones, part 2

This is a continuation of my previous blog on communicating with family and friends when you have chronic pain or illness.  Towards the end of this post I have included some basics about good communication and assertiveness in general.  I end with some basic facts of life.

1. Even when you and your partner seem to be on the same wavelength, don’t expect them to be psychic. Be clear about what you like or dislike, need, etc.
2. Build your support system so you have different people to help with different needs.
3. Participate in family activities as you can, but don't hold others back from what they want to do.
4. Family members need to know that they are more to you than just a paycheck, a bill payer, a dispenser of medical care etc. They are also people with wants, feelings, and limitations of their own. Thank them out loud and/or in writing from time to time.
5. If you are having a good day and are capable of doing more than usual, let your partner know. Also let them know when you are capable of doing less than usual. Do as much as your health permits to maintain independence.
6. If you don't feel well and end up yelling at your partner when they haven’t done anything wrong, apologize. Don't just hope it goes away. Let your partner know you are mad at your illness and not them.
7. Sometimes we may suffer guilt and fear of being too much of a burden, and we withdraw, leaving our partner to wonder if it was something they did. Talk about your fears and feelings of guilt. Encourage them to be open as well.
8. Some people may be so uncomfortable with your illness or pain that they are in denial. They don't want to talk about it or hear about it because it is too distressing. They may feel overwhelmed and cut off communication.
9. Or they may be very worried about you and not know how to express it other than nagging you or being overprotective.
10. Try to understand their perspective, and work with them from there.
11. If you disagree, be respectful and assertive. Tell the other person what the problem is, and how you suggest fixing it.
12. Use "I" messages when appropriate: "I feel angry when I try to tell you about my pain and you mock me. I would appreciate if you would try to understand how I feel.”
13. Try to keep your expectations of one another reasonable, and be willing to cut each other some slack on the things that aren’t deal breakers.

The key to most communication is assertiveness. The best definition of assertive is DIRECT WITH

RESPECT.

Good communication involves:

Making eye contact.

Giving others the chance to have their say without interruption.

Listening - Focus on what the other person is saying, not on what you want to say next.

Asking questions when you don't understand or need more information.

Repeating back to the person what you understood, to make sure you did understand correctly.

Recognizing and communicating how you feel, as well as what you think and want and need.

Accepting that others have a right to their opinion as much as you do to yours.

Remember- Each of us is the center of our own universe. You can't change someone else; you can change how you interact with them. Each of us is responsible for the consequences of our actions.

How to Communicate With Your Doctor

This is part 2 of 2 in my 'How to Communicate With Your Doctor' series, started in my previous post, 'How Doctors Think'.  This is a list of ideas and strategies to get the most out of your relationship with and your visits to your doctors.

1. In the weeks leading up to the appointment, keep a list of symptoms, questions and issues you want to discuss. Be specific. Organize and prioritize your list before the appointment. Plan to discuss 2-5 issues, depending on the complexity and time available.
2. Keep a list of all medications, supplements, vitamins, etc. including dosages and frequency. Include past medications, why you stopped them, and allergies and adverse reactions to medications. Also list any medications you need refilled.
3. If it is a new doctor, bring a summary of your medical history, and have any relevant test results and info sent from your previous or referring doctor.
4. Be open with your doctor. He can't help you if you aren't honest. Help your doctor help you by giving all the information he needs to give you the best treatment. If you don't plan to follow his instructions, say so, there may be alternatives more to your liking (less expensive, less time consuming, more convenient, etc.)
5. If you are uncomfortable talking about an issue, write it down. Give it to the doctor to read. Remember that your doctor is trained about all body parts and how to treat them.
6. Give your doctor a copy of your list of questions, issues, etc., and keep a copy for yourself.
7. Look for a doctor whose 'bed side manner' is compatible with you. Some people like a doctor who takes charge, others prefer more of a team approach.
8. Ask questions if you don't understand. Speak up if you don't like what the doctor suggests. Ask for alternatives, and take time if you need to make a decision. Ask for a referral for a second opinion before agreeing to surgery or other intrusive or expensive procedures.
9. Repeat back what the doctor has told you to make sure you got it right. Write down instructions. If you have difficulty with thinking clearly, take someone with you who can help make sure you get what you need.
10. Make sure you fully understand your diagnosis and treatment before you leave, as well as what the next step is. If the doctor has left, ask the nurse.
11. Always get copies of test results for your own file, and to share with your other doctors.
12. Find out if your doctor offers email communication between visits.
13. When describing pain, tell: where, how intense (on a scale of 1-10), if it is constant, occasional, intermittent, etc., what it feels like (tingling, throbbing, stabbing, achy, etc.), what makes it better or worse, and how it affects your life.
14. If tests are suggested or ordered, ask what the test will show, method, preparation, what is involved, when to expect results, whether they will call with the results or if you need to call, and insurance coverage. When you get the results, ask for an easy to understand explanation.
15. For a new medication, ask the name, purpose, how, when and for how long to take it, possible side effects, which ones to be concerned about, and what to do if they occur. Is there anything to avoid while you’re on it, such as certain foods, drinks, or other medications or driving? When should it take effect and the cost. Have one doctor take charge of all your meds to minimize chance of interactions. If a medication is not working for you, or you can't tolerate the side effects, talk to your doctor. Don't stop it or change the dosage on your own.
16. If you want to try complementary or alternative treatments, talk to your doctor about it. Present articles and information, discuss pros and cons and possible interactions with current treatments. If you get a doctor's prescription, your insurance may cover it.
17. Educate yourself about your illness. Though your doctor is the expert, he should not be expected to know absolutely everything about every ailment. Keep up with the latest research on treatments, bring in literature to educate your doctor. Some doctors don't like this, find one who does. They are more likely to treat you as a partner rather than just a patient.
18. You have limited time with the doctor. Focus on medical related issues. Other questions, such as directions to a testing center, or the time of your next appointment, or where you should park your car, can be asked of others on the doctor's staff.

If anyone has other ideas to add to this list, please post a comment at the end of this blog post by clicking on the word 'comments'.

How Doctors Think

My most recent chronic illness/chronic pain support group meeting was on the topic of communication with your doctor.  In today's post and the next one, I will share some highlights of that session. I started with a review of the book HOW DOCTORS THINK, by Dr. Jerome Groopman. 

Dr Groopman stated that medical students these days are taught to diagnose by using decision trees. The trunk of the clinical decision tree is a patient's major symptom or laboratory result, contained within a box. Arrows branch from the first box to other boxes. For example, a common symptom like "sore throat" would begin the tree, followed by a series of branches with "yes" or "no" questions about associated symptoms.

This can be useful for run-of-the-mill diagnosis and treatment — distinguishing strep throat from viral pharyngitis, for example. But they don’t work when a doctor needs to think outside the box. This method of diagnosing ignores the fact that each person is different, shows symptoms differently and reacts differently to treatment.

Dr Groopman concluded that the next generation of doctors was being conditioned to function like well-programmed computers that operate within a strict binary framework.

Doctors are supposed to be emotionally neutral, but this isn’t always the case. The sickest patients are often the least liked by some doctors. The doctor may feel frustrated, and feel a sense of failure with disease that resists treatment. People with chronic pain and chronic illnesses tend to fit this category. It’s important to find doctors who can work with us.

On average doctors tend to interrupt patients within 18 seconds of when they begin telling their story. Doctors end up making thinking errors, by stereotyping, or jumping to conclusions based on assumption. They fail to consider possibilities that contradict their mental templates of a disease, and thus attribute symptoms to the wrong cause. Once there is a label, they stop looking, ignoring details that don’t fit.

After surveying the significance of a doctor's words and feelings, the book looks at how different types of doctors think. An ER doctor needs to use a different thinking style than a primary care doctor. For either one, though, sound medical judgments meld together first impressions and deliberate analysis. This requires time, perhaps the rarest commodity in a healthcare system that clocks appointments in minutes. There is a factory mentality w/ managed care.

This book is worth the time to read it.  It will give you insight into how your doctor may be thinking, and that insight can guide how you interact with him/her.  Dr. Groopman gives some suggestions of what we, as patients, can do to help our doctors give us the best care:

• Offer to retell your story-how you felt, when and how it happened/. This can remind the doctor of a clue he had overlooked or forgotten, or prompt him to think in another direction.
• There is a 20-30% error rate in radiology- esp. w/ more sophisticated scans, where there are thousands of images. Ask that scans be re-examined, or even redone.  Radiologists do best if they know why the scan was ordered. If the doctor didn’t specify, you tell them. If other tests were inconclusive, they may also need to be redone.
• Patients can ask questions to guide the doctor off the automatic expected path. “What else could it be?” “Is there anything that doesn’t fit?” “Is it possible I have more than one problem?” “What is the worst thing this could be?” “What body parts are near where I am having symptoms?” If treatment isn’t working or if the doctor suggests something that didn’t work in the past, or you had a bad reaction to, tell him, and ask “What else can I try?”
• Tell your Dr how you feel, what you think, what you fear. Ask questions if you don’t understand. Take notes. Take someone with you if you want, to be an extra set of ears.
• Sometimes a doctor does not want to be asked questions. It is your body; you have a right to be informed, and to get the best care possible.
• If you feel you and your doctor are not communicating well, you can find a new doctor, or bring up the issue with the doctor. Sometimes clarifying expectations can help.
• Dr Groopman concludes that doctors are learning to partner with the patient and family. Patients need to be more educated and informed. Look on the internet (but be picky about what sources you believe.) Talk to other people. Give your doctor info about your illness, etc. The more they understand, the better they will be able to help you.

In my next post I will share a list of other ideas to help you communicate better with your doctor.