Living With Lupus - A Parent's Message

I will never forget that phone call - 9 years ago. It was from my daughter Debbie who lived in California. “Daddy” she said, “they just diagnosed what’s wrong with me. The doctor said I have systemic lupus erythematosus” - she could hardly pronounce the disease, no less understand what she, at 21 years of age, was about to face for a long time.

The words struck me like an arrow. Systemic lupus something or other. What was it? I never heard of this disease. I felt completely ignorant, helpless, afraid, alone. What did I do or not do to bring this disease on - this disease that neither of us could pronounce or understand? “Debbie” I said, “don’t worry, I’ll fond out all I can about it and get back to you.” That’s all I could say at the moment - the most important moment in my daughter’s life and all her educated, all knowing, loving father could say was I’ll get back to you with some answers. What answers - was there a cure - was it life threatening - how much pain will she have to endure - what kind of life will she now lead - how can we as parents help her - should she move back to New Jersey - should we move to California - on and on these questions ran through my head.

All of a sudden I felt great anger gripping my body. Why my beautiful daughter - why her in the early stages of her life - why her who loves life so much and has so much to live for. Why have you done this to her? The you I still cannot figure out.

How did a loving father cope these past 9 years? How do all you parents, spouses, siblings - significant others who have loved ones afflicted with lupus - cope? How do you deal with anger, guilt, fear, the so many feelings, mixed up inside of you everyday as you see your loved one suffer. When you want to take the pain away and cannot. When you want to say “give it to me, let me suffer with it so you may go on and live a normal life.”

I, like may of you, have found some answers and a great deal of support from the Lupus Foundation. In my case, the Lupus Foundation of New Jersey. I first joined for very selfish reasons. I wanted knowledge, information I could pass on to my daughter and to help me understand what this disease was all about. What effect will drugs have on her body? Are there alternate treatments? What about nutrition, diet, exercise, etc., etc., etc.? I asked many, many questions, attended many meetings, spoke with many doctors, got some answers, not enough - there had to be some other way. It was then I decided the
best source of information, the best way I as a parent could cope with this disease was to get involved directly with lupus patients. Get to know them, them to know me - what it feels like being a parent. To put to work my skills as a trained “Behavioral Counselor” to help them and they help me.

I began conducting rap groups, support groups for patients and significant others. I’ve learned more about the disease, as well as how to cope more effectively as a parent from those sessions than from all the medical lectures I’ve attended. I found the answers to many questions - the answer that in most cases you, the lupus patient, has more knowledge about the disease and its effect on your body than any physician. That each one of you must become more assertive and forthright concerning the treatment you favor. That the most important aspect of the doctor-patient relationship is, that your doctor be a
good listener, as well as someone you can depend on.

In turn I’ve shared my knowledge concerning the importance of a positive self concept of feeling good about oneself in coping with lupus. Of how to deal more effectively with stress and the impact of “mind on the body.”

We’ve learned from each other, we laugh, cry, share feelings, touch each other and together me, a parent, and they, the patient learning from it, deals more effectively with his feelings, as well as being able to communicate with his daughter. In summary, I am calling on all of you out there - all you parents, spouses, significant others - get involved - no more feelings of loneliness, no more feelings of helplessness, of guilt. We need each other, we need all the human resources we can mobilize in the fight against lupus - we must give our loved ones the message - you are not alone - you will never be alone - we
are as one.