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 their experiences)
Ask organizations and self-help groups who they can recommend (disadvantage: different people have different preferences)
Ask in disease-related forums
Find the right words/medical terms for your online search (information exchange with other patients, Wiki, Google books, PubMed)
Contact the author 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 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 send publications, supporting the diagnoses, to the physician. Additional, those information could include suggestions for new treatment options (not too much material, because doctors may not have enough time to study all of it).
Don’t forget: Not every doctor is willing to read publications or go through your medical record before your appointment. If this happens, you have to decide wether you want to look for another doctor or arrange a second appointment right away, so he or she has more time to review your paperwork and discuss the findings with you.
Less is more:
Do not bring all your reports.
Try structuring them depending on which specialist you see. What reports are necessary to reach your goal? 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)
Often we are lucky if we at least find one specialist in our country, and most of the time he or she is far away from where we live.
Therefore we need advanced 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 exaggerate 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 with carrying luggage, emotional support, emergency situations, and might also notice when you are getting exhausted.
Carry an emergency bracelet or emergency cards with you (see traveling with EDS and cervical spine instability)
Step 3: Appointment
Our diseases are complex, and that is why we need to focus on our main problems, for example three most bothersome issues.
We should not overwhelm our doctors, especially right at the first appointment. Remember that you can always set up a new appointment to allow you more time.
Set clear goals.
In my opinion, respect is one of the main criteria for a successful doctor and patient relationship.
You should always try to treat your doctor with the same respect you want to be treated. Even if you disagree on some subjects, or when you think this appointment is a waste of time, it does not hurt to say THANK YOU. You never know if you might need this doctor again in the future.
Anger and aggression don’t work out well. You most likely won’t reach your goal while showing a frustrated attitude towards your doctor. If you don’t share the doctor’s opinion, just tell him in a respectful manner.
Of course, you don’t have to tolerate everything. A doctor who does not treat you respectfully, is no doctor you want to trust. However, try to get the best out of any appointment.
Remember: Doctors are also humans and can have a bad day, just like us. Try to understand the pressure under which the physician has to work.
Trusting, understanding and forgiving:
Doctor and patient should aim to create a relationship based on trust. It could be friendship-like. To accomplish this both sides have to listen carefully to one another, and try to walk in the shoes of the other side.
The physician should believe his patient, and he has to understand that the the patient is his or her body’s own specialist, and most of the time know exactly what the problem is.
On the other hand, the chronic ill person should understand, that he or she might overwhelm a doctor. Physicians want to help or cure us, which is impossible in our cases, and this might lead to frustration on the doctors side.
We should also accept a doctor’s privacy, and should not expect an immediate response to any e-mail. Doctors who are willing to write e-mails are rare and special and should be appreciated. Again, a THANK YOU is appropriate. Show your doctor that you are grateful 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 complicated patients who take out a lot of them. Nobody is perfect.
Experience and knowledge is something the doctor can learn; being interested in you, not:
With a disease such as Ehlers-Danlos syndrome, which is one of many rare diseases, it is hard to find a specialist. There are simply not enough diagnosed cases, and not enough research on the topic. This means just a few doctors care about this patient population. Therefore, finding a doctor who offers years of experience with EDS is unlikely for many of us.
However, I believe, simply being interested is way more important than experience and knowledge. A doctor who is willing to research and listen to the patient could be the next expert. Experience comes over time.
Do not try to put everything in one single conversation. It is usually not possible to address more than three main issues during one standard-length office visit. 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 that 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 my office visit.
I look for questions that remain open. Then I create a new list for the next appointment with all unanswered questions.
Additionally, I write down all findings I want to have included in my reports, and ask my physician to add information on future plans as well.
If the report contains any errors, I ask for readjustment.
Lastly, I schedule all necessary appointments my physician referred me to.
Might I want to hear a second opinion?
And remember: Patients do have rights, too!