9 Pieces of Advice for Newly Diagnosed

Dear Newly Diagnosed Friend,

When the doctor put a name to your health problems, your life changed.  You have a chronic illness that is not going away.  You have to reexamine your life goals to account for the wrench that been thrown at you.

It’s OK to be scared.  It’s OK to be confused.  It’s OK to be angry.  Whatever you’re feeling right now, it’s OK.

It’s also time to get to work.  You’ve got a marathon in front of you, not a sprint, and you will most likely have some potholes in your way.

As someone who has been where you are, I’ve got some advice for you.

• Get informed.  I’ll bet you have a lot of questions. The people close to you are going to have plenty of questions, and you’re going to be their main resource for answers. You’ll probably get frustrated dealing with all of the questions, but it’s even more frustrating answering “I don’t know” over and over.

• Your doctor is your first source of information. My doctor’s office had a number of brochures on the wall, which gave me resource ideas and basic information about my disease. Your condition may have a reliable organization from which you can learn more. If you’re prescribed medications, find the online site for those medicines. These sites typically break out information for newly diagnosed to avoid overwhelming you.

• Learn to trust your body.  As you learn more about your condition, you’ll know more about why your body reacts in certain situations. You’ll start to understand what you need to avoid. Some conditions become worse when you’re out in the heat.    You’ll learn what is related to your condition and how to respond.  It will take trial and error over time, but you’ll figure things out.

• Don’t follow every piece of advice people give you.  You’ll be amazed how knowledgeable people who don’t have your condition think they are.  I’ll get a phone call about something Mom heard about on the local news.  My sister-in-law will tell me about some herbal concoction that had helped a friend feel better.  A friend tells me about how much better a cousin of hers felt after switching to a certain diet.  I’ve learned to smile, nod, and change the subject.

• Realize that people may not understand it when you’re not feeling well, especially if your symptoms come and go.  Some symptoms are not obvious to the human eye. People sometimes think that if they can’t see what’s ailing you, then you’re not sick.

• Don’t freak out about your kids. If you have kids, know that they won’t be scarred by your condition.  They’ll have questions, but you’ll know how much information they need and when they need it.  I had two boys after I was diagnosed.  While there are things I can’t do (like chaperone field trips – woohoo!), there’s so much I can.  I truly believe that having a Mom with chronic illness has brought out their compassion and their empathy.

• Rally your tribe.  You cannot go through this alone.  
  • You need your family.  
  • You need your friends.  
  • You need your person.
  • You need people who will go out with you.  I told one of my friends I have MS and that it could lead to bladder issues.  Her reply?  “Honey, we’ll just slap Depends on you and head on out!”  
  • You need the ones who understand that you might have to cancel at the last minute because you’re just not up to going.
  • You need the people who will be happy to bring over a pizza and binge watch Netflix instead of heading to a baseball game in 90 degree weather. Before I had mobility issues, we had a supper club that went out to eat frequently. Now we order takeout and mellow out watching shows in my family room. 
  • You need someone who will pick up a few groceries for you when you’re just too tired to get them yourself. 
  • You need to have people who will help you or give you space when you need it.

• Focus on what you CAN do instead of dwelling on what you can’t. A diagnosis does not take away who you really are. You may have to make some adjustments, but you may also find opportunities you may not have had otherwise.

• Add me to your tribe.  Got questions?  You can ask me. Other people with chronic illnesses understand the frustrations of dealing with symptoms and uncertainty. They understand when you have bad days. They remind you that you are not alone.

I hope this advice helps. Ask me anything. It’s a journey that you didn’t ask for, but you can do more than survive – you can thrive.  My biggest takeaway for you is always remember…

YOU HAVE A CHRONIC ILLNESS.  BUT YOU ARE SO MUCH MORE THAN YOUR DISEASE.  

LET THE REAL YOU SHINE THROUGH.

Hugs from your tribemate,