Step 1: Find specialists
To find a specialist there are several possibilities.
Do your research online (if necessary contact the physician you found and ask for experiences)
Ask organizations and self-help groups who they can recommended (disadvantage: different people have different preferences)
Doctors review portals
Ask in disease related forum
Find the right words/medical terms for your online search (exchanges with other patients, Wiki, Google books, PubMed)
Contact the authors of scientific publications
Ask your doctor or other physicians for recommendations
Step 2: Preparation of the appointment
Lists and notes (see my templates of lists):
Most of us have many and complex problems that quickly become confusing.
Symptom list / diary: To give your doctor a short overview and to not lose track of your symptoms I recommend to create a list or diary. For example a symptom list or a pain diary.
History of pre-existing conditions (with family history), diagnoses, therapies and medication.
Summary of previous important results and other relevant studies.
List of questions (the best way is to start it a couple of weeks before your appointment, this way you will not forget important details).
Contact by telephone or e-mail before your appointment possible?
If possible, contact the doctor before the appointment and ask if documents can be sent some time before you are going to see him. This gives the physician time to read your reports and be prepared for you.
In case of rare diseases it might be a good idea to also send publications to the physician supporting the diagnoses, including suggestions for new treatment options or new advanced diagnostic possibilities (not too much material, because doctors may not have much time).
Don’t forget: Not every doctor is willing to read publications or go through your medical record before your appointment. In this case you have to decide wether you want to look for another doctor or directly arrange another appointment to have more time to review your paperwork and discuss the findings.
Less is more:
Do not bring all your reports.
Try to sort them out depending on which specialist you see. Which reports are necessary to reach your goals? Does the neurologist need the report of the cardiologist?
Do your research:
And as always, educate yourself about your condition. You are your own specialist.
(see also how to travel with EDS and cervical spine instability)
Very often we are lucky if we at least find one specialist in our country and most of the time it is far away from home.
This means we need very good planning skills:
Search for the cheapest but most comfortable way to get to your destination: Car sharing (no individual time schedule), busses (often really cheap), train (plan extra time for delays, good for back problems, carry your luggage alone?), plane.
Search for cheap accommodations: hostel (how is the mattress), camping, patient housing, is there a restaurant or bakery close by, what kind of public transportation is available, does it maybe make more sense to stay at the hospital?
Factors which worsen your symptoms (like hot weather, menstrual cycle or other individual problems)?
Important: Always allow enough time to recover, take a gymnastic mat with you to be able to lie down at any time, Braces? A friend or family member can help a lot with carrying luggage, emotional support, to listen when you are too exhausted, to intervene in emergency situations.
Carry an emergency bracelet or emergency cards with you (see traveling with EDS and cervical spine instability)
Step 3: Appointment
Because of the complexity of our disease, it is sometimes helpful to focus on, for example, your 3 major problems.
Especially for your first appointment it is important not to overwhelm the doctor and to focus on your biggest complaints at the moment. If necessary set up a new appointment right away to allow more time. No doctor is able to overlook all your reports all at once.
Set clear goals.
This point is one of the main criteria for a successful doctor-patient relationship for me.
You should always try to treat your doctor with a lot of respect. Even if you disagree or think this appointment is a waste of time it is always good to say THANK YOU. You never know if you won’t need this doctor again.
Anger and aggression don’t work. You won’t reach your goal then. Even if you don’t share the doctors opinion you can tell this during a respectful conversation.
Of course you don’t have to tolerate everything. A doctor who cannot treat me with respect is in my opinion no doctor I would trust. You should still try to get the best out of that appointment.
Remember: doctors are also humans and can have a bad day just like us. Try to understand the pressure under which the physician is.
Trust, understanding and forgiveness:
Especially with a chronic illness a similar relationship like friendship between the doctor and the patient is very important. To accomplish this both sides have to listen carefully and try to understand the opinions of the other side.
The physician should believe us and understand that we are our bodies specialist and know exactly what the problem is.
On the other side, we should understand that we quickly overwhelm our doctors and that they sometimes are frustrated because they cannot cure us.
We should also accept the privacy of the doctors and do not expect an immediate response to any email. Doctors who are willing to write emails are very rare and special and should be appreciated a lot. Again a THANK YOU is necessary. Show your doctor that you are very thankful that he does more than his standard procedures. Everybody likes to hear that their effort is valued.
Forgive them if something was forgotten or did not turn out right, doctors are often overloaded and we are very complicated patients who take out a lot of them. Nobody is perfect.
Experience and knowledge is something the doctor can learn; being interested not:
With a disease like Ehlers-Danlos Syndrome, which is one of a lot of rare diseases, it is very hard to find a specialist. There are simply not enough diagnosed cases.
More important than experience and knowledge is simply being interested. A doctor who is willing to research, listen to the patient and include their experiences could be the next expert. Experience comes over time.
Follow up appointment:
Do not try to put everything in one conversation. It is usually not possible to address more than 3 main subjects. The simple solution is booking a follow-up appointment shortly after the first one in order to clarify the remaining questions.
Connecting with other doctors:
Unfortunately chronically ill patients often need many different specialists.
Therefore it is absolutely necessary to connect all doctors or to have a coordinating doctor that keeps track of all the findings.
Questions and notes:
At each appointment I write down all the answers and important details to my questions. This prevents me from forgetting things. Also a second pair of ears cannot hurt.
Ask questions! Ask about everything which is unclear right away.
Other important things:
Take someone with you to your appointment if you need assistance.
Have an open mind for the treatment options your physician has to offer. Don’t deny it right away. Think about it.
Step 4: After the appointment
After each appointment, I write down all the notes I took during the appointment in my computer.
I compare which questions have already been answered and which are still open. Then I create a new list for the next appointment with the still open questions.
I write down what findings must be included in the report and what our further plans are.
Should the report contain any errors I ask for readjustment.
If recommended by my physician I will schedule other appointments for further diagnostic testing.
Know your Rights!