Whether you are being seen by a doctor who is very knowledgeable about hypermobility syndrome or a doctor who doesn't have a clue, there are certain steps you can take as a patient to make sure that you get the most out of your doctor appointment. It is important to be proactive and take responsibility for your health - and remember, the person who knows the most about your body isn't your doctor, its you! You have to be your own health advocate, and when it comes to a doctor visit that means being prepared. Here are some tips to help you do that!
1. Know the Questions You Want to Ask Beforehand
In the days leading up to your appointment, leave a notepad out so you can jot down questions as you think of them. This is a lot easier and less frustrating than trying to brainstorm all your questions at once, and makes it much less likely that you will forget any questions you may have. The night before your appointment look over your list and rewrite your questions in order of importance. This helps you go into the doctor's office with a clear idea of what your purpose is for going and what you want to get out of your visit. Once you get in the exam room, though, it can be useful to start by asking one of your easier/less complicated questions first. This helps start the appointment on a positive note and helps you build a rapport with your doctor which will make asking more difficult or detailed questions a little easier. Its also important to remember that doctors are almost always running behind schedule, and many may try to rush through your appointment. If this is the case, stick to your list and do not let the doctor leave before he/she has addressed all your concerns - remember, you are paying your doctor to be there, and you deserve to have all your questions addressed. If you want, make a copy of your list of questions and hand it to the doctor when they walk through the door. If the doctor has your list, he/she is more likely to stick to it and not try to leave before you have discussed each point.
2. Have a Clear List of Symptoms
When dealing with a complex, chronic illness like hypermobility syndrome it is important to always keep a health dairy. You don't have to write a lot, but you should try to jot down all the symptoms you have each day (pain, headache, fatigue, muscle spasm, etc.), how severe those symptoms were (either on a scale from 1-10 or describe what that symptoms 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. It is extremely helpful to bring your diary to your visit so your doctor can get a complete look at your condition and how it impacts your life. It can be a bit unpractical for your doctor to read through your entire diary in one visit though, so the night before an appointment I like to print off a blank calendar on a piece of paper and then write the name of each symptom on the days I had them. This is great because it not only tells your doctor your symptoms, but also helps them see any patterns that might help them make a diagnosis or formulate a treatment plan.
3. Bring Another Set of Ears
If you can, it is always helpful to bring someone with you to your appointment. A lot of times I will leave an appointment and ask myself 'what just happened? what did the doctor say?' Things can make sense and sound good in the exam room, but once you leave it it can be hard to remember everything the doctor said and figure out how that doctor talk translates into real English. Having another person is great because they can not only help you have a good appointment, but afterward you can ask them 'what did you think the doctor said?' 'what did you hear?' It always helps to get another person's opinion, especially when it comes to complicated medical matters. If you can't find anyone to go with you (and even if you do), it helps to bring a notebook so you can take notes. This will help you remember the most important things your doctor said. If you go alone you can also ask your doctor if its okay for you to record your session so that you can go back and review it as many times as you need.
4. Make Sure You Leave with a Plan
Hypermobility syndrome is a complex disorder that cannot be treated or solved in just one visit or even by just one doctor. Because of this, its best not to look at any one appointment as 'the one' that will solve all your problems, instead look at it as helping you take one more step in the right direction. So even though you probably wont be leaving your doctor with a 'cure' its important for you to at least leave with a plan. The plan your doctor gives you should have two components: first, a plan for what to do in the immediate future, and second what your next step after that should be. It is important to leave with a plan for the immediate future so that you can be proactive and feel in control of your condition. Even if your doctor doesn't know or understand what is wrong they can still give you a plan - maybe to try a new medication, increase the dosage on a medicine you are already taking, visiting a specialist, or just watching your symptoms for a few more weeks until your next appointment. It is also important to leave with a plan for what your next step will be so that you know even if your current plan/treatment isn't working that its not the end of the road. Hopefully you can leave with a plan for what to do if your current plan works as well as a plan for what to do if it doesn't.
I hope these guidelines will help you get the most out of your next doctor visit. And always remember that if you see a doctor who doubts you or disrespects you, you can and SHOULD find a new one. Even if you have a great doctor it can still be helpful to get a second opinion. Hypermobility syndrome is a complicated illness that will take multiple visits to get control of, so be persistent and never take no for an answer - its your health and you deserve the best care possible!
Love and Hope,
Chelsea
