A definition of Juvenile Scleroderma in simple, easy to understand language
My doctor doesn’t understand my problems!!!
Written by Dr. Thomas J.A. Lehman
Pediatric Rheumatologist
Hospital for Special Surgery, New York, NY

All of us feel frustrated when we try to explain a problem to someone and it feels like they aren’t listening or they just don’t get it. When it’s the doctor who doesn’t seem to understand you feel ten times worse. It might be easy to assume the doctor doesn’t care or the doctor isn’t very smart, but if that was true the doctor wouldn’t be there. Far more likely is that you haven’t established good communication with your doctor. That’s not good!! If you and your doctor can’t communicate clearly with each other, neither of you is going to be satisfied. How can this be avoided?

The first step in good communication is open communication. That means you tell your doctor the truth and your doctor tells you the truth as well. That also means you have to trust your doctor and she/he has to trust you. If you don’t feel you can trust your doctor you should either explain why to the doctor and see if you can fix the situation. If you can’t you should change doctors. Remember the doctors who care for children with rheumatic diseases are all ‘volunteers.’ No one is forced to become a pediatric rheumatologist. The doctors in this specialty all want to take of you. However, every doctor isn’t the same and every family isn’t the same.

Some people like meat, some people like fish, some people are vegetarians. No one should say that these choices are right or wrong. Just as people make different choices about what they eat, people make different choices about the kind of doctor they want. However, someone who hates meat shouldn’t go to Joe’s Steakhouse and the person who wants a steak shouldn’t be in Franks Fish Place. If you realize you’ve made a mistake the best answer is to go somewhere else. Doctors are all different people and they all have different styles. Make sure you and your doctor match well enough to trust each other.
When you first visit a doctor tell them what they need to know about yourself and your condition. Feel free to ask them about their training and their attitudes. During that first visit you have an excellent chance to decide if you feel comfortable. Once you’ve picked your doctor relax and trust them. However, trusting your doctor does not mean you can’t ask questions. If the doctor changes your prescription ask why. If he sends you for special tests ask why again.

Sometimes what I think is an easy request causes ‘funny looks’ from the family. It might be an insurance issue, it might be fear of the machine that does the test, it might be because you think I’ve decided something terrible is wrong, or it might be that it means taking more time off from work or school. If the family tells me what they are concerned about, we can do something about it. If the family keeps quiet, but doesn’t get the test done, no one wins. Remember doctors aren’t mind readers.

One of the most difficult situations is when the doctor is running late (they aren’t happy about that either) and you are frustrated and in a hurry. If your child is sick and you need to be there, calm down. Waiting a long time and then rushing yourself and the doctor won’t work. Try not to schedule important things too close in time to doctor visits. It is very important that you can trust the doctor to give you the time you need when you need it. That may mean he will be late for the next patient. It may mean he/she is late for you because of the time needed by a patient before you on the schedule.

Sometimes you may feel the doctor never asked you the right question and your concerns weren’t addressed during the visit. Don’t go away like that. Stop the doctor and tell them what you are concerned about.

How do you get the best care?

  1. Select a doctor you feel you can trust. If you don’t trust or feel confident with your doctor, change doctors.
  2. Express your concerns openly so the doctor knows what they are and can address them. Ask your questions about medicines, tests, etc. Walking out and simply not doing what the doctor suggested won’t make you better.
  3. Make sure you let the doctor know if you have a lot of issues on your mind. Call ahead and schedule a longer appointment so everyone isn’t rushed and you aren’t holding up a lot of other people. Be prepared for the doctor to bill more for a longer appointment.
  4. Don’t get yourself in a jam by scheduling something important right after a doctor’s appointment. You won’t be relaxed and you won’t get the care you deserve. If the doctor is acting like they are in a hurry, ask if they have the time to take care of you properly or you should reschedule your appointment.
  5. Remember you and your doctor are working together towards a common goal. If you feel like you are on different sides, ask yourself and the doctor what’s wrong and fix it. If you can’t, change doctors.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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