Multiple sclerosis (MS) is a disease that causes the immune system to break down the protective covering of nerve cells, disrupting communication between the brain and the rest of the body. People living with MS often experience weakness in their limbs, slurred speech, and extreme fatigue.Over 400,000 people in the United States have been diagnosed with MS, many of whom feel understandably overwhelmed by the burden this condition bears.

Health Stories Project is meant to bring these people together and let them know they are not alone in their struggles. As a part of this mission, we asked people with living with multiple sclerosis what they would say to someone who was newly diagnosed. Here’s what they had to say:

1. It’s Okay to be Scared

“It’s terrifying at first, you will be angry and confused. It’s okay to go through all these emotions just don’t unpack and stay in them.”    – Jeanette

“It seems right now that your world just crashed and is falling apart. I’m not going to say things get easier because that’s up to you. You’ll fight everyday but just know that you have MS it doesn’t have you” – Ashley

“It is not the end of the world. Yes, it’s scary, there are many unknowns with MS.Take one step at a time.” – Cynthia

“I know you’re afraid, confused, angry, etc. it’s okay, allow yourself to feel these emotions, but do not despair, you’re not alone. This diagnosis does not define you but will become a part of your journey.” – Daisy

“It is normal for this to be a scary and uncertain time.  While you may be feeling a loss of control over your life right now, you can regain some control and learn to manage the disease which will help you establish a “new normal” in your life.” -Jo

2.Get Educated and Ask Questions

“Keep track of changes that occur, keep notes of symptoms to share with doctors. Ask questions of health care providers. Don’t settle for answers you are not comfortable with. Advocate for yourself! Take a trusted friend or family member to appointments with you, another set of ears is always a good idea.” – Becca

“Gather all the information you can about MS and ask your doctor any and all questions that you have.” – Michelle

“Get informed as soon as possible on potential treatment options. Do NOT be afraid to advocate for your best health!” – Kate

“Ask as many questions as you can.  No question is a stupid question.  Be your own advocate.” – Misty

“You are your best advocate, and you need to embrace that role.  Become well-versed about multiple sclerosis.Never leave a doctor’s office with questions still lingering in your head.Prepare for your doctor visits by writing down all your questions, concerns and new symptoms.” – Anonymous

“Take a deep breath!  It’s so overwhelming-  and the next few weeks and months will be filled with information.  Seek out trusted information sources to help you sort through it all.” – Abby

3. Find a Support Group

“Talk to your circle of people. Join groups that pertain to MS and groups that pertain your specific medications and ask fellow MSer’s questions. Safe and private groups are amazing, helpful and comforting because they “get it”. You are NOT alone.” – Anonymous

“There is help and support out there. You aren’t in this alone.” – Dana

“There are support groups and good resources to go to. Family and friends are honestly the best supporters in these times! If someone offers to help you, accept it.”- Maria

“It’s okay to ask for help. It’s okay to need someone.” – Ashley

“Find people to talk to that have MS and all for help in navigating the myriad of obstacles that you may encounter in trying to set up affordable medicine plans.Don’t isolate yourself. You are not alone.” – Kelly

“You are NOT alone.  Go online and look up the Multiple Sclerosis Society.  Contact them.  Ask them to put you in touch with people in your area who might also have MS. We are all in this together. I will be glad to laugh or cry with you.”  -Margarita

 4.Everyone’s Multiple Sclerosis is Different

“No two people’s MS is the same.  You may share some of the same symptoms; however, your body and the way you react to them will be totally different.” – Anonymous     

“Everybody carries MS differently. Don’t let someone define your diagnosis or progression by comparing you to a friend, relative, or someone they know who has MS.  Kindly stop them.  MS does not define who you are, don’t let people define you by your MS.” – Laura

“Read and learn as much as you can about MS but DO NOT assume what you learn will be your fate because everyone’s MS journey is different!” – Sheila

“Each person is an individual case and no two cases react exactly the same way all the time. Even if there are similarities between you and someone, your body will probably NOT do the exact same thing.” – Anonymous

“Find things to do that are right for you. No two people with MS are alike.” – Omayra

5.Try to Stay Positive

“Your life is going to change significantly. I refuse to say that it will get worse,but it will get a little harder. Mood is everything. Positivity and a strong outlook make all the difference. You will not always remember that. It is ok to feel sorry for yourself sometimes. It is ok to feel overwhelmed. It is important to remember that your life isn’t over.” – Christopher

“Keep your face towards the sun so you don’t see the shadows.” – Alissa

“You have to take every day as it comes. Your only limited by your mind. A positive attitude can keep you sane when nothing else does.” – Kayla

“There is hope. Your attitude controls more than you realize.” – Anonymous

“Don’t be discouraged. Receiving a diagnosis is scary, however you can live a great life. Our mind is a powerful thing. It took me a while to realize that my attitude towards this fight was a powerful tool.” – Kafui

“It’snot the end, it’s a new beginning to a new world. Never say ‘I can’t’ always say ‘I’ll try’, because once you stop trying, that’s when the disease takes over.” – Joy

“Always expect to get well. Even with disability, know that life can be full of joy,adventure, peace and love. I am an example of all of the above.” – Karla

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