Valerie Burrows, Founder Emeritus EDS UK
Consulting a doctor can be a daunting prospect. We need help, do not want to be classed as time wasters and rehearse, time and again, what we are planning to say. Often though, all we have planned goes 'out of the window' and we rarely end up saying what we planned to.
The consultation is a two way process, the doctor can help you best if you can explain yourself plainly and as concisely as possible as his/her time and patience are not unlimited. If you feel you will need to take more than the average time allowed for an appointment ask the receptionist to book you a double appointment. For a successful outcome the following ideas may be helpful.
Give brief and clear details
Try not to beat about the bush. Describe your symptoms and say if you think you know what caused them, brieﬂy and clearly. Mention all symptoms even if you think they are irrelevant, they may be important in helping your doctor make an accurate diagnosis. If you have more than one problem begin with the most distressing/important one first.
Have a prepared list with you
You may be nervous or a question put by the doctor may steer you away from a point you wanted to make. It can be very helpful to prepare, in advance, a list of symptoms and questions you want to ask and take this list with you.
Have moral support and make notes
It can be valuable to have a friend or relative come into the consultation with you especially if you are anxious or depressed.
The friend can give you moral support and, maybe, confirm that your problems are as you say. They can also make a note of what the doctor is advising you as it can sometimes be hard to remember all that was said once you leave the surgery. Some patients find the doctor is more considered in his/her response if a third party is present.
Do ask questions if you are unsure what the doctor is saying or if you want him/her to explain further. It is important you are aware of all the facts and fully understand what he/she is saying.
Ask about management
There may be no specific treatment or drug that will help your problem but don't give up. Ask your doctor how to manage the problem and prevent it getting worse.
It may be that a splint, light exercise e.g. hydrotherapy, or even changing the way you do a job may help. You may have heard from another support group member of a treatment that has helped, be prepared to mention this to your doctor as it may not have occurred to him/her to suggest this.
A first visit
If you are seeing a new GP or specialist for the first time take along your medical history (see the information sheet on Preparing a Medical History). It is not always easy to remember all operations/ dates etc and this will allow your doctor to see your medical history at a glance rather than having to read through all your notes. Have the names, addresses and phone numbers of other doctors/specialists you have seen in your medical history. If your doctor wishes to confer with them this simple list will make his/her life easier.
Take along relevant EDS literature, your doctor may not have a thorough knowledge of EDS and all its complexities. However, if you are not taking literature from Ehlers-Danlos Support UK, do ensure that it comes from a trustworthy source. Be prepared for him/her to wish to keep the literature. Keeping spare copies of EDS literature yourself means you have them to hand if an emergency arises.
You may feel it necessary to change your doctor. This may be due something as 'simple' as a personality clash. If there is more than one GP in your practice ask the receptionist, when you next make an appointment, to give you one with one of the other doctors. He/she could be the very person you are looking for. If not you can arrange to change to another practice. See details on your medical card.
Understand your doctor:
Your doctor may well feel at a disadvantage, he/she became a doctor with the desire to 'make people well' and there is no cure for Ehlers-Danlos syndrome. Reassure your doctor that you are not expecting miracles but would appreciate his/her help and support to make your day-to-day living as pain free as possible. It is also unrealistic to expect your GP to be fully conversant with EDS, it is an umbrella name for a number of variants all of which differ in symptoms and severity. Inform your doctor of Ehlers- Danlos Support UK literature and the EDS DVD. Better still, ask for copies of the literature to be kept in your notes.
Try to keep your emotions in check, you may feel misunderstood, angry or very upset but it is difficult to be in charge of a situation when your emotions are ruling you. Again this is where a supportive friend or relative may be able to help by attending with you. Work at building up a good relationship with your doctor. It can only benefit you.
If, after careful consideration, you feel unhappy about your GP's help and support, ask to see a consultant, but remember that your GP is always your first line of contact and every endeavour should be made to enlist his/her help and support.
The views expressed are those of the author(s) and should not be construed to represent the opinions or policy of the Ehlers-Danlos Support UK or its Trustees.