As part of my practice as a Doctor in Physical Therapy who specializes in Hypermobility and other chronic disorders, I frequently get asked about how to get doctors and the medical community to pay attention to your symptoms. It sounds crazy, right?. But as a Hypermobility patient myself, I can completely relate to this query.
When I was seeking a proper diagnosis years ago, they labeled me a drug user – despite having tested negative in tox screens -, an attention seeker and a whiner. I was even told once they “did not work on people like me”. Period. After years of dealing with this experience, and having helped many clients with similar conditions, I have come up with 7 tips for talking to your doctor when approaching them about your hypermobility symptoms and treatment.
1) Start with what you want.
We all want to walk into an office and be listened to and have the provider know precisely what our problem is and what the appropriate treatment is and leave happy. However, even with an open and well-informed doctor, that rarely happens.
The main reason behind this is that physicians don’t know everything about every condition, and they also don’t know you, ie, your medical history. That leaves them with little time to manage both things, and they will go with the most common or easiest option first.
As much as it would be ideal to be able to tell your physician the whole story about when your symptoms first appeared and how they evolved, you’ll get much better results if you go straight to the point.
What is it that brings you there? Do you want a diagnosis? A referral? A test? Or just help with acute pain?
Just pick the most important one and stick to it.
Finally, know what the provider can do for you. If you are seeing a surgeon, he will give you his recommendations about surgery, don’t expect them to order genetic tests.
2) Summarize in 2 sentences your history.
“I have had back pain for the last 8 years and have already tried PT, medication, chiropractic, etc.”
“I started having pain when I was 13 in my neck and hips, but now have had difficulty walking the last 2 years and it is getting worse”
These are great ways to give your physician a general idea of your medical history and also what you are looking to get out of that appointment.
Remember, most medical systems are focused on efficiency (meaning attending to the maximum amount of patients possible), not on the quality of the appointment’s outcome.
3) Remember, this is a multi-step process.
You must understand this from the beginning of your diagnosis process: there’s no easy treatment for Hypermobility and hypermobility-related issues.
Having this in mind, you must learn when to push, when to be patient and when to walk away. My personal and professional advice here is:
Push when you want a referral or a test, but have a reason behind it.
Be patient with trying medication or treatments. Treatment approaches like physical therapy, take some time to start seeing significant and long-term effects, so be willing to monitor change over time.
Walk away and find another physician when you are not moving forward or feeling any progress, and when the provider is not willing to provide the referrals or recommendations that you need.
Remember there may not be an absolute diagnosis yet for all your issues and you might have to pursue treatment without a specific name for your condition
4) Have your records straight.
Know that if you are in the US, and if you find errors in your medical record, you have the right to have them corrected.
Just take into account that this does not include having a provider change a diagnosis that he/she feels is accurate.
Keep copies of your records and test results. This allows for easier access to be able to provide them to a new provider right away, and not having to repeat previous tests saving you both time and money”
5) Be smart about your previous diagnosis.
If you have another label or diagnosis, don’t assume everything is related to that. It may be, but it could also be something different. In this way, it is good to acknowledge it and then ask for an assessment.
For instance, if you have fibromyalgia – which can cause widespread body pain – every symptom you have can be attributed to this, and that isn’t necessarily right.
Therefore, when you are dealing with a new physician, you can introduce your situation with something like:
“I know I have been diagnosed with fibromyalgia, and my increased back pain may be related, but because it has changed so much, I would like to be re-evaluated and make sure it is not coming from a new problem.”
In this way, you acknowledge the importance or the influence that your previous diagnosis could have on your present symptoms. Still, you also open the door for ruling out other potential unknown causes.
6) Don’t straight up disagree with your provider.
I know… This can be a hard one.
If they offer you medication, don’t say: “I don’t want that.” Taking a minimum dose of a painkiller will not make you addicted for life.
As hard as it can sometimes be, my advice here is that even if you don’t understand your provider’s point of view, try to pause for a moment and allow it to be a discussion.
For example, If you want an MRI and your physician wants you to try Physical Therapy first, instead of getting caught in an argument, ask him what progression he has in mind.
If what they have in mind is something like first Physical Therapy and then, if it doesn’t work, MRI, that’s something you could more easily understand and accept.
It may also happen that your insurance requires you to do things in a certain order, or medical protocol recommends an order of doing things. You may have to complete things in sequence to get to what you want, but often it is in your best interest.
If you have already tried something, then speak up and let them know. Sometimes you can skip parts that way.
7) Participate in your care
Suffering from chronic pain is not easy-peasy.
Sometimes you can become overwhelmed that you feel there’s no point in sitting in the driver’s seat so you become passive, and you stop actively seeking more information and trying to understand your condition.
Others can feel frustrated that they become defensive, overactive, and even aggressive.
If you can relate to any of the above, take someone with you to support you and help you advocate for what you really want.
Approaching the medical community when you suffer from conditions like Hypermobility can be tough. Few physicians are well-informed, and it is easy to feel you are not getting the right answers to your questions.
However, building a support team – that includes medical support – is one of the critical pieces for your long-term progression, which is why we cover it in the Hypermobility Solution online course.