Overwhelmed By a New Chronic Diagnosis: The First Steps
You can have me read this article to you instead of reading it yourself…
Or you can read it the old-fashioned way below…
A new chronic diagnosis is overwhelming. Period. It doesn’t matter what the name is, how serious it is, or what it even means. It’s the equivalent of being told that your life has been altered in a permanent way.
Getting the Diagnosis
For those of us with a chronic GI diagnosis, we might have even been having symptoms for quite some time. They may have been uncomfortable, debilitating, embarrassing, and more. We might have been in constant pursuit of a label for what was happening to our bodies even as we slowly became accustomed to those very changes.
Obtaining a diagnosis – a label, a name – gives us something to hold on to and some type of direction to move in. In the case of a GI diagnosis, however, it rarely comes with a pamphlet of helpful information from a doctor explaining all of the ways that they’re going to fix us right up and get us back to our lives. Instead the standard encounter is a little bit quicker than that. We get a name and, if we’re lucky, we get a half-hearted statement from a doctor that sounds something like “….so there may be some diet strategies that you can try” or “…here’s a prescription for a medication that works for some people”.
And then before we are entirely sure of what happened, we’re out of the office and on our own. But we got a diagnosis – there’s hope! To the internet!
Google doesn’t often disappoint – at least not in terms of quantity. We find some information about what exactly that label means. And we find a list of what the most common treatments are for that label. We even look at the symptoms and perhaps have a moment of ‘oh my gosh, that’s me!’. Or, for some of you that have already been looking for an answer for some time, you might have done all of this long before the doctor confirmed it. You’ve already been to the sites, you’ve already aligned yourself with the right term – you just needed the doctor to add his official medical stamp of agreement.
Eventually you even work your way to the blogs of other people that have this diagnosis and see what their lives are like; see what they have tried, failed, or succeeded with. You might become heartened or discouraged depending on which blogs you run across. But you still have new information that you didn’t have before, and that means there are new options that you didn’t have before. Right?
And then…
Many people will eventually find that the treatments they wanted to try aren’t quite working for them. Or maybe those treatments are causing them to feel worse in other ways. They will find that they don’t always understand why their symptoms are occurring, or that their specific issues don’t seem to fit in to the cookie cutter box of the symptoms listed online.
Or maybe you are one of the people that is reeling uncontrollably. You are so sick that you don’t even know where to start. You are in and out of the hospital, or you are in and out of work. You can’t keep food down or you can’t keep it from rapidly coming out on the other side. You withdraw from social situations and those that are closest to you even as you try to battle against the reality of what is happening. Your life as you know it is a repeating cycle of something that you want desperately to halt.
We all respond to bad news in different ways. And, even with the risk of sounding negative and being a downer, the truth is that a chronic diagnosis is a source of grief and loss. Any of us that have experienced it know, even if we haven’t put a title on it or been willing to sit down and wrap our minds around the exact issue at hand, that a chronic diagnosis is the proclamation of a loss. A loss of your life as you know it. A loss of your sense of normalcy. Possibly the loss of hobbies and activities that define you and are important to you. A loss of closeness to those around you.
I never want to dwell on the negative, but at the same time it accomplishes nothing to ignore the reality. No amount of unbridled optimism is going to return what we lost. And no amount of positivity is going to lessen the blow of the diagnosis.
Rewriting the Story.
What is important to focus on is that there are ways to break the negative cycle that you might be stuck within. There are ways to take charge of your situation and achieve better health. You can become empowered and you can improve your quality of life. Piece by piece, and step by step, you can take control of your ship again and write your own story.
But the information and skills necessary to do those things are not as easy to come by as one might hope. Sometimes Google does disappoint. Sometimes it falls horribly short of providing that magical fix or the answer to your question.
That’s exactly what Your GI Journey is here to provide. This website seeks to close the gap between your questions, Google’s answers, and your doctor. It seeks to provide you with the information and skills that you need to take control of your situation and become an empowered self-advocate. It seeks to provide you with a community that understands where you are coming from and wants to provide research-based answers that can help you in your situation.
Even if you are years into your journey, you can benefit from the information found here. I know that I personally took many, many years to find a strategy and a quality of life to which I could say ‘I can live well like this’. I hope that the information here and the information that continues to become available over time can slice your time spent reaching that point down to just a fraction of what it took me.
What Next?
Find more about “me”. Or start with learning the basics of self-advocacy and how to claim your place in the healthcare system. If that doesn’t sound right for you, then consider learning the ins and outs of your new diagnosis from a different perspective.
If you simply want to have information sent directly to your inbox when it becomes available, sign up for the newsletter to the right. I’m very happy that you’re here and I want to provide you with the tools that you need to feel the same way.
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