Dear MS Newly Diagnosed Friend,
When the doctor said the words multiple sclerosis, 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. One of the first things I did was join the National MS Society. They have a vast library of information, but it’s organized so that it’s easier to find and digest information. You’ll be surprised how many questions your family have, and they’re going to ask you.
- You’ll learn to trust your body. Many people with MS start to feel ill when they’re out in the heat. You’ll learn how your body handles heat. You’ll also understand how to manage MS fatigue and any of the other symptoms you encounter. You’ll get in tune with your MS body and see the red flags that will make you stop and think. It won’t be easy, but you’ll figure it all out.
- Don’t follow every piece of advice people give you. You’ll be amazed how knowledgeable people who don’t have MS 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.
- People may not understand it when you’re not feeling well. For a large part of the MS population, 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.
- Your kids will be fine. If you have kids, know that they won’t be scarred by MS. 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 trip – woohoo!), there’s so much I can. I truly believe that having a Mom with MS 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 people who will go out with you. 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 your person. You need someone who will pick up a few groceries for you when you’re just too tired to get them yourself. 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. 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 to have people who will help you or give you space when you need it.
- Let me join your tribe. One of the first things I learned after my diagnosis was how much I appreciated talking to other people dealing with MS. Other people may look at your and think you’re fine, but other people with MS recognize the hidden symptoms. Got questions? You can ask me.
I hope this advice helps. 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 MS. But you are so much more than MS.
Let the real you shine through.
Hugs from your tribemate,
Amy
