24 Pieces of Advice for Someone Who’s Just Received a Multiple Sclerosis Diagnosis


“What advice would you give to someone newly diagnosed with multiple sclerosis (MS)?”

We posed this question to the MS Society’s Facebook community and received nearly 1,000 honest, powerful answers from people who have been there, too. As you read, you’ll notice some advice seems to contradict other responses — that’s because even when a diagnosis is shared, what’s true for one person may not be true for another. But sometimes that simple desire to connect and help someone else can make a difference.

1. “First, I would say congratulations on finally getting a diagnosis because I know it’s been a long road to get here. Second, as in opinion — get one and see an MS specialist if you can. Some people find benefit and solace from doing research into the disease, but other people find it depressing and scary. Know yourself on that before you dive in. Give careful consideration to whether or not you disclose at work. Embrace mobility aids with enthusiasm if you need them. Understand your rights under the ADA. Ask for help when you need it. Take care of yourself, especially when it comes to stress. Welcome to the club, I’m sorry you had to join. You are not alone.” — Diane Sayre

Quote from Diane Sayre that says, "You are not alone.”

2. “Breathe. Read about MS. Everyone will have advice for this and that because it worked for someone else, but MS is different for everyone, so talk to a few different doctors about ideas for what to do for you.” — Justin Sears

3. “Newly diagnosed? Too much information coming at you? Go on a vacation. Take a break. MS will be there when you get back. Now, if you are in the throes of an exasperation, take care of that first. Then go on vacation. And no Googling about MS during vacations.” — Tammy Botzum

4. “You are not MS, you just have MS. You are you. Don’t let this disease define who you are.” — Stephen Moneymaker

Quote from Stephen Moneymaker that says, “You are not MS, you just have MS. You are you. Don't let this disease define who you are.”

5. “Don’t believe all the ‘cures’ you’ll hear about. Everyone in your life suddenly becomes a neurologist.” — Colleen Guerrero

6. “Yes, you have MS — it doesn’t have you. You will have good days and you will have tough days. You can still do the things you love with a little modification. There are so many resources out there that it can be overwhelming, but make sure when researching you are using a reputable resource. Go to events in your community to learn about the medications out there, but also to meet others living with MS. Others living with MS can offer many tips and tricks for managing MS.” — Michelle Shephard

7. “Take advantage of the days you feel good and do something outside, and don’t be afraid to rest on the days that you don’t.” — Rocky Helmer

8. “For better or for worse, your case of MS is yours. Others’ experiences don’t matter for your diagnosis. Do some research and, with your doctor, make decisions that work for you. Tell people or don’t. Honestly, there’s no good or bad advice. Decide how you want to handle it.” — Samantha Niemeyer

9. “Start a health diary! Get as much information regarding your health, test results, copies of MRIs put into a file and keep a diary daily if you have changes in your health. Once the decision has been made about which type of MS you have, you can begin investigating your type of MS.  Your diary will become your Bible.” — Rena Steer

10. “Educate yourself so you can be your own best advocate. Find a doctor you feel comfortable with and can communicate with. Especially in the beginning, keep track of any symptoms (weird, mundane, whatever) and feelings you have, any meds you use/d, etc. You may find a pattern or your doctor may see something that can be treated, etc. Don’t be afraid to ask questions. Don’t get frustrated when other people don’t ‘get it.’ They really can’t ‘get it” unless they have MS or a similar chronic illness — just like you won’t ‘get it’ when someone has cancer, or diabetes or another illness you have never had.” — Colleen Ryder Akerman

A quote from Colleen Ryder Akerman that says, "Educate yourself so you can be your own best advocate."

11. “A positive attitude goes a long way. Don’t jump to fearful conclusions; instead just listen to what your body is telling you, and you will learn to adapt to your MS. You are allowed to grieve for the life you had before your diagnosis, but try to not let it define you. You are great.” — Ashley Walsh

A quote from Ashley Walsh that says, "You are allowed to grieve for the life you had before your diagnosis, but try to not let it define you. You are great.”

12. “After the shock of being diagnosed with MS subsides, I urge anyone to try and participate or attend an MS Society sponsored event. I have done MS walks and MS bike rides. The people who organize these events are wonderful. The people who raise money are among the most generous people I have met. You are among so many people that are all there for one common cause. It is very uplifting, please try one out!” — Megan Mills

13. “Life may seem a little topsy-turvy right now, but it is going to be OK. MS might seem like a ‘life sentence,’ but you can still have your dreams! They just might look a little different! Dream big and know that you can still enjoy every moment that is given to you.” — Angela McMurray

A quote from Angela McMurray that says, "Dream big and know that you can still enjoy every moment that is given to you.”

14. “As a newly diagnosed person I would say let yourself grieve but also educate yourself. Grieving is a normal part of acceptance and moving on. Be prepared for rough emotional days and good ones. I have moments where I am sad, then I am grateful the next day. Realize anyone, not just someone with MS, can wake up tomorrow and not be able to move. Be an advocate for yourself, live your life and use it as a lesson to appreciate everything.” — Cindi Wilson Fuente

15. “Don’t let the unknown scare you. Try to take it day by day. And cry all you want! Talk about it all you want. We’re here for you.” — Melissa Tweedie

16. “Learn to listen to your body. You’ll find you can feel when you need to slow down and rest. And don’t underestimate the impact that stress has on your body. After 16 years, I know when I need to rest more and take care of myself.” — Kathy Moosavi

17. “Take things day by day. Worrying about the future and the ‘what ifs’ won’t do anyone any good, so surround yourself with people who love and support you, and seize every moment of every day.” — Kandis Haas

A quote from Kandis Haas that says, “Take things day by day. Worrying about the future and the ‘what ifs’ won't do anyone any good, so surround yourself with people who love and support you, and seize every moment of every day.”

18. “Find a doctor you feel comfortable with, a MS specialist if you can. Educate yourself. And not by just anything you see on the interwebs.” — Tim Riddle

19. “Don’t read up about it as soon as you’re diagnosed. You might not be prepared for what you’ll discover. Instead, talk to others with MS. Their understanding can be a comfort. When you’re a little more calm, then do further research.” — Erica E-volve Rivera

20. “You can lead a normal and happy life. Embrace the strength you didn’t know you had (trust me… it’s there!) and just take care of yourself in every way any person should. Lastly, remain positive. It may be frustrating when people don’t ‘get it,’ but don’t let it bring you down. You are the one with disease, so you manage it, but ask for help if you are having a bad day.” — Beverly Sardina Lanthier

21. “The most important thing is to surround yourself with people who will support you and raise you up when you need it. Stay positive! We are all warriors!” — Melissa Bruni Vukajlovic

A quote from Melissa Bruni Vukajlovic that says, “The most important thing is to surround yourself with people who will support you and raise you up when you need it. Stay positive! We are all warriors!”

22. “Get involved with a local MS group. Until I got involve with a group of ladies and men in my town, I was all alone in my thoughts. We get together every month for lunch. This group was able to answer question I have. Also think getting involve with the MS groups on Facebook. The group thing is the way to go to help you out. You can ask questions from other MS’ers.” — Kim Shelton Thompson

23. “Find a doctor and team you trust, and build a relationship with them. Surround yourself with friends and family who want to help. Don’t feel bad asking for help. Save your energy any time you get a chance. If someone offers you their seat, take it.” — Stacy St Pierre

A quote from Stacy St Pierre that says, "Don't feel bad asking for help."

24. “As someone recently diagnosed (nine months ago) who is still struggling to accept my diagnosis, it’s terrifying. You’re allowed to be scared, and you’re allowed to be upset. You’re allowed to grieve the loss of a normal life before MS. People will bombard you with stories about friends, family members, co-workers, and acquaintances who have had MS for X amount of years and how great they’re doing. Their experience with the illness is theirs, not yours. Don’t go online and read every piece of information about MS right away because it will crush you. Your good days now will be your worst bad days before being diagnosed, but coping with that will be the easiest part. Make sure your emotional support system is strong because next to your health care team it is the most vital part of living with MS. Try and love yourself. Try to treat yourself kindly as often as you can. Cry on your bad days if you think you need to. Being diagnosed isn’t easy or fun. The more positive outlook will come later as you begin to accept that this is your life now.” — Jordan Schaefer

A quote from Jordan Schaefer that says, "Try and love yourself. Try to treat yourself kindly as often as you can."

Editor’s note: Some answers have been edited for brevity and clarity.

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