Lisa Doggett

"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.

I don't take breaks. I spend my mornings, afternoons, and evenings racing around like I'm competing in a track and field event. Get up – exercise (while reading materials for work) – get kids to school – work, work, work. I don't stop for more than two to three minutes for a meal – just to heat something up or throw together a salad. If I have a doctor's appointment or an infusion day, I bring my laptop and just keep going.

I pack my schedule like an overstuffed suitcase. I strive to be a master of efficiency, and I don't want to miss out on anything. Since I was diagnosed with MS, I'm even more aware of time slipping away. Who knows how long I'll be able to exercise, or get the kids to school, or work? I need to do everything now because I don't know how long now will last.

The problem, of course, is that I do miss out. All the details, the time to breathe, the time to be present with my friends and family. I am too busy racing to the next thing on my list.

I recently was introduced to the concept of PREcrastination. The term seems to be defined in different ways, but I discovered I am the type of precrastinator who puts off breaks and fun until all unpleasant and difficult tasks are accomplished. (And that happens when?) Although I pride myself on not procrastinating, I now realize that I am a skillful precrastinator.  

But this weekend I took a break. I put my life on hold for three short days to escape with friends to Santa Fe, New Mexico. One of the great blessings of my life is that I have three friendships that have endured since about the time I learned to read. My friend Hannah – a fellow MS Warrior – and I were born four months apart and have been friends since before we could talk. My other two friends who joined us in Santa Fe, Rachel and Laura, were close friends with Hannah and me in elementary school. Our lives have taken different paths, and we had not all been together in 17 years.  

We spent the BEST weekend together. Our hikes were long, but leisurely. We looked for rocks, noticed the light on the aspen trees and the lone bright yellow flower next to the path. We admired the stars, unencumbered by the light pollution of a big city. We packed in a lot – including visits to Meow Wolf (a crazy, interactive art exhibition) and a trip to the spa. I did have a seriously overstuffed backpack – unusually heavy with my new rock collection - to carry home.

I arrived back in Austin to a messy house, piles of laundry, unanswered email, stacks of regular mail. I needed to go grocery shopping and plan the week. But that break - and reconnection with my oldest friends – was so rejuvenating that the catch-up has been OK.  I need to do it more often. I need to take shorter breaks during the day – to meditate or stretch or take a walk. I need to see friends more often, to disconnect from media and technology in order to connect with the people I love. Please join me in taking more breaks and share your experience below.