Improving communication with the doctor will help you get the most out of what is often a brief interaction.  Being a partner in your own care is key to making the most of your health. Your doctor can only do so much without your cooperation, so making sure you're prepared for your appointments can be a big help.  Try not to invest all of your hope into one particular appointment with a doctor or specialist, it is better to see each appointment as a possibility to take your treatment another step in the right direction. Here are some ideas to help you achieve this goal:

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Bring relevant information: Where possible, take with you a bullet-point list of your medical history and details of treatments or medications you are using/have tried, together with any supporting literature from trusted sources, such as specialists you have seen in the past, or publications and downloads available from the Hypermobility Syndromes Association, Ehlers-Danlos Support UK or Ehlers Danlos Society.

 

Have a clear list of symptoms:  Write out a list describing what the symptoms are, what that symptom's kept you from doing, when they happened, how long they lasted, and if you felt there was a specific trigger for any of those symptoms. Information like this helps a doctor see any patterns that might help them make a diagnosis or formulate a treatment plan. Although it may truly describe how you feel, doctors often find descriptions such as  ‘I just hurt everywhere’ or ‘I feel like I’m old ’ vague and difficult to understand. Where possible, try to think in advance which words could best help your doctor to understand your pain. Is the pain dull and aching, pounding, sharp, spiky, radiating, tingly, tight, pinching, constant, intermittent, deep, stabbing, spasming etc?

 

Keep a diary:  Keeping a diary can help you and your doctor to build up a picture of how symptoms such as pain, fatigue or dislocations are affecting your life.  List the symptoms you are experiencing and when they occur; note any causes that seem to trigger or increase these symptoms.  This information can also help you and your doctor establish if there are any patterns relating to your symptoms.  Noticing, for example, that your dislocations increase around the time of mensuration could help you and your doctor implement a plan to protect your joints around this time.  Realising that you often suffer fatigue on the day following a particularly busy event could lead you to re-assess pacing your activity.

The downside of keeping a diary, is that constantly having to assess pain levels and what hurts, can cause a patient to focus on their pain, reinforcing the pain-cycle that pain-management teams try so hard to help patients break.  Because of this, pain management clinics often advise that diaries are only kept in the initial stages of treatment.  

 

Make a list of questions that you would like answered:  Be prepared for your appointment. Before you see the doctor, make a list of problems in order of their importance. Make a list of symptoms you are experiencing and write down when they started and what makes them better or aggravates them.  What questions have been on your mind? How have your medications and other treatments been working? Are you experiencing side effects or do you have other concerns? Have you heard about a newer medication or treatment? Are there other ways to treat the condition? Are there any side effects or risks? How long will you need treatment for? How will you know if the treatment is working? How effective is this treatment?  Is there anything you should stop or avoid doing? Is there anything you can do to help yourself?

 

Consider making a double-appointment:   Doctors spend an average of five to ten minutes with each patient. If you think that you will require some time with your GP, in order to explain your concerns properly, you could consider booking a ‘double-appointment. This facility must be used wisely, however, as a double appointment may mean one less appointment for others.

'It is  also important to remember that doctors are often running behind schedule, and may try to rush through your appointment. If this is the case, stick to your list and do not leave before he/she has addressed all your concerns.' (Quote: hypermobilityhope.com).  Be assertive if you need to be, but always be polite.

 

Ask for Clarification:  Ask the doctor to repeat and explain anything you don’t understand. If there are words you don’t understand, ask what they mean or get the doctor to write them down so that you can look them up later.

 

Be clear about what you would like your doctor to do:  Be clear about what you want your doctor to do, such as refer you a physiotherapist or prescribe a different medication.  It is also important to leave the appointment with a plan for the immediate future and an idea of what you should do if, after the period of time agreed on ends, this current plan is not working.  What happens next? Do you need to come back and see the doctor? Who should you contact if things get worse? Does the doctor have any written information you could take for reference? Where should you go for more information?  Is there a support group or any other source of help?

 

Be prepared to ask for a referral if necessary:  As we know, hEDS and HSD are complex conditions, which are often misunderstood. It is unsurprising therefore, that many patients with hEDS and HSD have, at some point, experienced a medical appointment which left them feeling frustrated, angry, disappointed or confused.  It is important to remember, however, that your General Practitioner  (GP) is ‘a physician whose practice is not oriented to a ‘specific medical specialty’. They may be able to help a great deal, but may not have an in-depth knowledge of your condition, or have all of the answers you hoped for.  It is important that you feel you are in ‘safe hands’ under the care of a doctor who believes you and is at least prepared to look into the most recent information on hEDS and HSD and their treatment.  If you do not feel this is the case, you may wish to consider changing doctors, or asking for a referral to a health care professional with an interest in hEDS and HSD. Click here to be taken to ‘Health and Wellbeing Practitioners' in the EDS/HSD resources section of this site). 

 

'Take what you can from the medical appointment, even if it was not as beneficial or as informed as you would have hoped.  Even one small piece of information or advice can be added to you arsenel or understanding.' (Quote:  Hannah Ensor - author, and Patron and Chair at the Hypermobility Syndromes Association)

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