When you first start hearing about EDS (or other hard to diagnose conditions like Fibromyalgia), it is often said that getting a diagnosis takes several years. This is for a variety of reasons including, but not limited to, lack of knowledge about the rare syndrome, hesitation on a physicians part to make such a serious diagnosis (that for the hEDS version doesn’t have any genetic markers identified), and the wide variance of manifestations among patients. It often means these years are full of frustration as you’re being passed from office to office to run various tests, sometimes multiple times, and all the while leaving with more questions than you went in with or feeling like all your symptoms are just in your head. It’s a grueling experience that’s hard to explain when the average person goes in to their doctor and leaves with a plan of action within, at most, just a few visits.
I Just Want Answers!
There is a line that most people, whether they’ve already got their diagnosis or are still searching, don’t like to talk about when it comes to the process of getting answers. It’s a very sensitive topic that often stirs up a lot of heated conversation. It follows the phrase “What do I say to get my doctor to diagnose me?”
There is nothing inherently wrong with this phrase. It is merely indicative of the frustration that we all feel when walking the path of finding answers. Imagine for a moment, that your arm is in intermittent pain with such intensity that you drop anything you happen to be holding. Wisely, you go to your physician to diagnose and fix this problem. Despite multiple tests, they tell you that your arm is fine and is showing no issue. To make matters worse, it never seems to act up while at your office visits. At this point, you KNOW something is wrong because it is impacting your ability to function at home and work. You get referrals for specialists in hopes that those that have an area of focus in your particular problem will know something your primary care does not. Yet it yields the same results…there is no reason that shows up in testing to account for the symptoms you are explaining. After a year of this, your physician is starting to show signs of frustration every time you see him. Coworkers and family members begin to treat you as if you’re just being a drama queen because if it was a real problem you would have found a solution by now. But you still KNOW that this is a very real problem that impacts your ability to do normal tasks and now your emotional well being as you deal with others in your life. You’ve tried to even find your own answers through websites and community forums.
Now imagine that through one of your many community forum explorations that you find a group of people that seem to have similar problems but have received a diagnosis AND treatment! Can you not then imagine that you would ask what they did to get their help? It’s a natural and understandable progression in the journey to find solutions. You’ve been wandering around in dark tunnels for so long and have now finally found a light at the end of the tunnel and you want to bolt full speed towards it before you lose hope again.
Walking The Line
So where does the fine line I mentioned come into play? What we can sometimes forget as we run full speed towards that light, it’s not in the direction that’s meant for us. It can lead us to make rash decisions or changes to our health that have damaging potential rather than lead to improvement. It’s the fine line of using additional information that will assist your doctors in helping you vs telling your doctor what you think they need to hear to get the answer you think you want to hear. It’s incredibly tempting to exaggerate your symptoms or lie about what you experience if it will increase the chances of finding relief after so long of searching and suffering.
Those that end up crossing the negative side of this line isn’t because they’re bad people, or hypochondriacs, or have Munchausen. It is simply the act of a person in desperation. They’re just tired of wandering in the dark looking for a way out. It’s even more of a difficult thing to hear if you’re the one wandering in the dark that you need to continue to have patience when it seems like an answer is finally within reach. For our own sake, however, we must try our hardest to remain on the line rather than falling off of it. It is our duty both to our selves AND to our doctors to be honest about our symptoms if we want to give ourselves the best chance.
Coming up to this metaphorical line has a lot of benefits. It brings with it talking about symptoms that we have overlooked along our journey because we have normalized them as a part of daily life. It carries with it possible diagnosis to suggest to our physicians as they walk this road with us. It brings us down tunnels that we’ve previously overlooked. If we allow ourselves to trek these options with caution rather than give into the desperation that threatens to take hold, we give ourselves the proper time to make sure that this will lead us to the best options available.
It’s Not Easy
It’s about on par with the effort it takes to ice skate up an incline. Though I write about it, I’m currently struggling with it as well when approaching my chronic breathing complications. I’ve had to learn the hard way when I pretended my breathing issues presented in different ways during a time in my youth just so I could have the treatment I was convinced I needed to improve it. It ended up creating greater breathing issues as well as having an effect on my heart during treatment. Thankfully, it was completely reversible once I stopped the treatment, but I was lucky. It also served to profoundly confuse and frustrate my doctors rather than give them better diagnostic information. Despite this, I find myself STILL briefly considering telling the pulmonary and ENT things are worse than they are out of frustration of not having an answer after 15+ years of trying.
What keeps me from falling to the wrong side of that line is two main reminders to myself. The first, is the memory of my past experience. The second? Knowing that I’m not only helping myself the best way possible, but future patients that may be experiencing the same issue. If my physicians and I find the right answers while being honest, that information will spread and help others. Maybe not directly, perhaps it will be in passing conversation during a conference or a publication later down the line. Perpetuating the exaggeration or intentional invention of symptoms only serves to make a correct diagnosis more complicated for future patients.
But My Doctor Still Won’t Listen!
Not all doctor and patients are a good fit for each other. I went over some of this in a previous post. While there is always the potential to have a bad doctor, it’s wise to remember that every doctor has their area of comfort and specialty. Sometimes this means that you need to find a doctor that is a better fit for your needs. If you can’t find an answer together, it may behoove you to get a second opinion. This should not be an angry slight at your doctor, but rather seen as just a move to search down the dark tunnels with a different guide. Though it should go without saying, getting a second opinion should also not be used as doctor hopping until you get someone that will give you the answer you WANT.
Searching for answers it tiring, and my heart goes out to all of you facing similar paths that I’ve gone down and those that I’m still traveling. I wish with everything I’ve got that everyone could find answers and treatments that worked the first time. But since this isn’t an option for many like me, I will extend my wish that your journey bears sweet fruit…no matter how long it takes it to get there. Take the time and compassion towards yourself that you deserve to make sure that what you’re heading towards is an answer that will lead you to your true light at the end of the tunnel rather than into an oncoming train because you denied yourself that critical approach.
