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Facing a New Diagnosis: What the hell just happened to my life???

A favorite path in Pease Park, near downtown Austin

"You have MS."

 

What?!? That can't be right…seriously?... NO! I'm fine. You're mixing me up with someone else… At least it's not a brain tumor… but what the hell?..  that just can't be right…

 

That mishmash of thoughts at the time of an MS diagnosis, as with many other serious or chronic diseases, can be so loud and alarming that everything else is shut out. The analogies are endless – you're being sucked into a tornado, sinking to the bottom of the ocean, suffocated under an avalanche. I remember feeling numb, dizzy, confused, and horrified all at once.

 

It's hard to think of what's next, to imagine a life after the diagnosis.

 

But there is a "what's next," and you will get past that initial shock and move on. Here are some of my thoughts on how to cope at the time of a new diagnosis:

 

1)      Take a deep breath. Then take another one.

 

2)      Feel and just be present with your grief. Cry and scream. It's not fair. It's not right. You don't deserve it. Feel all of that frustration, without judgement. Then, after hours, days, or weeks, you stop, take another deep breath, and deal with it.   

 

3)      Don't run to the Internet. Google is not your friend in the moments after a diagnosis. Someone close to you might be able to take on the role of "researcher" and synthesize the information for you, but researching your condition early on can be overwhelming and demoralizing. Give it some time before trying to become an expert.

 

4)      Tell someone. Or share more widely, as appropriate. Getting support from trusted friends and family early on is critical. Of course, sharing big health news can be risky in some situations, so you want to weigh the pros and cons and be thoughtful in your approach. But make sure someone who cares knows what is going on and can help you figure out your next steps. (See my earlier post on support circles.)

 

5)      Get a good doctor. If the diagnosing physician is not able to manage your MS or other chronic disease, ask for advice to find the best specialist. Recommendations from others can be helpful as well. If at any point you are unhappy with the doctor providing your care, you might try talking to the doctor to see if your concerns can be addressed. If not, don't be afraid to seek care elsewhere.

 

6)      Choose coping strategies wisely. Reasonable coping strategies include talking with loved ones, exercising, meditating, listening to music, even distraction with work or productive pursuits. Avoid self-destructive strategies like alcohol, drugs, overeating, or excessive spending.

 

Perhaps most importantly, keep in mind that while life may not be the same again, it will continue. MS to me was a black cloud, suddenly obscuring my future. It took me months to get past my feeling of doomsday, my tragic fantasies. But I've found that while the silver lining is elusive at first, it is worth looking for, because it's usually there.  

 

What tips do you have for others facing a new diagnosis? Please add them in the comments below.

 
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