Emotions

I am so pleased to see so many familiar faces and also so many new faces! The title of my talk is “The Emotions of Lupus: for the patient, the family and the doctor,” and as a subtitle: “Who Is Driving The Train?”

I.     Let’s recall the common psychological three A’s of lupus (or of any chronic disease)

           Anxiety
           Anger
           Apathy/depression to the illness

and a patient’s often:

           Unhealthy Responses

           Denial Regressive Behavior
           Projection (ex. angry feelings)
           Introjection (ex: depression)
           Overly-dependent behavior
           Non-compliance (with treatment)

Within the family we see two reactions:

           Healthy Response

           Family caring/sharing

           Unhealthy Response

           Family angry
           Lack of sensitivity
           Lack of interest
           Withdrawal

II.      The “Healing Process” involves:

           YOU, THE PATIENT,

           YOU AND THE FAMILY,

           YOU AND YOUR DOCTOR

Let’s take them one at a time:

A. As a patient, ‘DO’:

What do you need to do? First, you must recognize you have lupus and put yourself in the driver’s seat!

You must come to terms and realize that you have to be dependent once in a while and accept help, both physical and emotional at times. You, as a patient, must realize you will have good and bad days. Maintain a sense of interest in life around you and don’t let go of those interests. It is most vital that you gracefully let go things you can no longer manage, without giving up or giving in. Find ways to celebrate life, maintain hope and continue to have a relationship with family and friends. Have a sense of appreciation with yourself. Use your creativity and let yourself enjoy it.

    As a patient, ‘DON’T:

Don’t withdraw!
Don’t run away; be honest with yourself!

To your own extent, do something for others, in whatever way you can.

B. As a family:

We have to ask you how we can be of help to you, be sensitive to you, but also share our feelings with you. MOST OF ALL, WE HAVE TO KEEP TALKING WITH ONE ANOTHER!

C. As a doctor, I have to:

Be sensitive, honest and provide realistic hope. Take time with you and listen and respond to your questions. Try to help you to maximize your functioning. Find ways to help you increase your pain tolerance

As a patient, you have to help me with:

Remembering that it takes time to establish a good relationship with you doctor.

Letting me know if you think I don’t listen to you!

Being sure to put some variety and interests into your everyday life (as best you can!).

Remembering to keep a sense of purpose about life through your family, friends, a job, a cause or spiritual strength. Above all, LEARN TO DRIVE THE TRAIN!

QUESTION: How do you deal with the family who goes behind your back to check with the doctor?

ANSWER: You need to sit down together and talk this out, to relieve their anger, their guilt or whatever the feelings may be.

QUESTION: How do you handle Job Stress?

ANSWER: Start by being honest and tell your boss or immediate supervisor that you have lupus and that, once in a while, you may need his or her help with “an exception to the rule,” but in turn you promise good effort.