Adjusting to Life After Finally Getting a Diagnosis

Chronic illness is something that can come slowly. It is a constantly building barrier that starts slowly, maybe your ankle hurts a little here and there and you just assume that you walked on it funny. But it can build over the years, still slowly, then start to get worse more quickly, over the months, and that is when you first start to think to yourself that maybe there’s something more going on here.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

You go to see your primary care provider, and they probably run some blood tests and refer you to a specialist — who you have to wait several months to get an appointment with.

During all of this time the pain is building, compounding, overwhelming, and eroding at who you are.

That PCP visit is the first visit in what can be a long, long journey to get a diagnosis. Some specialists will find something that fits some of your symptoms but not others, so you must go see another specialist about those symptoms (waiting another several months to even get in the door). And so it continues, for weeks, months, years. And you begin to learn how to manage your symptoms and your life over the time. You still have so many questions that have gone unanswered, but you just keep going, hoping that soon it will all be found out. Eventually, you keep telling yourself that soon someone will figure it all out, but you know that you’re not really believing your own words.

And then one day, you go to see another specialist (for me it was doctor number seven), and you go into it expecting it to be the same-old, same-old. Tell your story, have them select a few things to ask you more questions about, have them look at you in disbelief while you describe your pain, and then… out of nowhere, you get the answer to all of your questions in just a few simple words. For me, it was “Ehlers-Danlos syndrome.”

As there are stages to most adjustments, there are stages one goes through after finally getting a diagnosis that explains everything, but there’s still nothing the doctors can do. They say, “Come back as needed.” Well, what is that supposed to mean? When I’m in pain, or if something goes horribly awry?

At first, you almost feel empty. It’s not quite relief and not quite disbelief, it’s a strange “dis-relief.” You think about it constantly, but you don’t really feel any emotion because it hardly seems real. That part lasts a few days.

Then you get to the relief stage. You finally know what is happening! Well, with reservations — they still don’t really know how your disease will progress, so you aren’t completely relieved. But, you no longer have two doctors appointments per month, you no longer have to say, “I don’t know why it hurts” when someone asks you why you’re wearing a brace. The pressure is gone!

But — you need to figure out how to explain it to everyone, even when you, yourself don’t fully understand your illness. This is a long process. For some, the sweeping declaration on social media is enough, but some people need more answers and explanation. It can be a very long process, especially if your journey to diagnosis took a very long time. As you’ve moved through life you have interacted with so many people who know minute-by-minute updates about your health, because they love you, but it can be extremely overwhelming as you try to balance your own emotions, your normal life, and the many questions and emotions that are now coming at you from every direction.

And finally, you need to figure out how to live with it. Which is simple and complicated all at the same time. I was diagnosed a few weeks ago, in week six of my spring semester in college. I have been trying to adjust my life to fit with the demands of my schooling and my illness. I think I have been doing a pretty exceptional job of it, considering I am in pain every moment of my life. But this is the most challenging part. How do you live a full and fruitful life with an illness that has no cure, and very little in terms of treatment?

It’s hard but you must try. Understand your limitations but challenge yourself every day to push yourself further and further (but be careful not to push too far!). You can continue to impress yourself with the things that you are capable of. It will be hard, harder than you might think you can handle, but your battling with chronic illness makes you so strong, you can continue to build that strength and lead a life that inspires others and makes yourself happy.