The Road to Diagnosis: Sometimes Winding, Often Unending

When it comes to your health, it wouldn’t come as much of a shock if you’ve been down this kind of road before; the kind with random stops and sometimes-unexpected traffic, the kind where you might find yourself all of a sudden pushing ninety clicks to a destination you won’t stay at for very long. For me and my journey, it was no exception! For me, it took repeated returns to specialists I had already seen. Specialists who were trained for a particular issue, whether I had it or not, and specialists who 9 times out of 10 sent me to a different one.

The prime example of this was when I went to see one specialist in particular, whom I had seen two years prior, who initially had no cause for further testing, but had wanted to revisit what we already covered in case we happened to miss something. Fun fact - we did indeed miss something, and it was YEARS in the making, but we’ll get to that bit later. Walking into that appointment, I had thankfully become much more prepared than in previous years; having done my own research into medical jargon and criteria, I was my health’s own CEO. I had been running the show, and I knew what to ask about and what not to consider. I knew what the term was for something, and generally, I knew that the list of possible answers to what was happening to me was growing smaller and smaller with each one.

Together, we established our next steps, and with a new direction and a new checklist, together we started what felt like the millionth test I’ve had to do - but THIS time, we had a clear, distinct, and positive result staring at us in our faces. It was found that I have Ehlers-Danlos Syndrome, specifically type-3, the Hypermobile type. The one type without a distinctive blood test (yet), and yes, the one that has an impressive dress-up drawer of conditions. Sometimes I couldn’t even see it for myself until my doctor and I looked back at my history and connected the dots that had been left unmarked. Having already been exhausted from the nine-year journey, to be completely honest with you, meant that I wasn’t even able to celebrate. I just wanted all of this to be done. The diagnosis, the trial, the error. The trip, the stop, and the next stop that had to be made. The appointments that had repeat testing, and sometimes even being told there was no true resolution or cure to what was happening. I was SO over ALL of it…but one thing was for certain, and that was the fact that the journey never truly ends.

The reason why I used quotes around “progress” earlier in this blog post is that you may never truly feel like you’ve made progress in anything, especially when it comes to complex and multi-layered medical histories. You often have to look reeeeally closely to even find it in the first place, and you can’t always look back at where you’ve been when you’re still trying to keep moving forward. In all honesty, progress can be relative. You might have a “no” to something that was previously a “yes”, and while that is one of the most frustrating things to deal with, it’s an opportunity to keep going. To keep finding the no’s, if you’re still not where you want to be in your journey. Did I make progress towards an answer that better equipped me to handle what was to come? Yes, but do I have a cure? No.  

That fact is still something I grapple with to this day. Every appointment can give you something to take with you to the next one(s). Whether it’s the drive for more answers or an awareness of where not to go again, you might just be better off than you were before you made that stop. I’m far better off knowing now what’s going on than never knowing, and trying every possible solution that would only offer minor relief, if that. Knowing that I have hEDS now means that I have a much bigger job to do in managing stress, workload, mental capacity, and daily living tasks. My job will never be done, because I’m still here, still sick, and still getting wracked with symptoms that, even if you have management for, still send you reeling.

Long story short, my journey has been winding and unending. I know that I’m not the only one out there who’s dealt with this (and is still dealing with it), so I hope that my story shows you that asking questions, going back over results, and advocating for your health and well-being will take you much, much farther with your health than you may know now. I wouldn’t have gotten here if I hadn’t insisted on being seen in the first place, and thank goodness that I did.

Safe travels!