I asked people living with Multiple Sclerosis to share a piece of advice that they feel would benefit those newly diagnosed with MS. The response was overwhelming and very informative. I put together a list of their answers and hope it will encourage even those who have been living with MS for years.
If you are newly diagnosed, know that you are not alone. If you have been living with MS for years, sometimes reading a list like this will encourage you and help you to shift your focus back to things that are truly important in life.
The most recurring advice from people living with MS
- Stay calm, you are not alone.
- Stay positive. You will have good days and bad days.
- Surround yourself with positive people.
- Keep moving.
- Fight, fight, fight.
- Have faith.
- Take one day at a time.
- Don’t panic.
- Love yourself.
- Keep living.
- Be your own advocate.
- It’s not the end of the world.
- Life goes on.
- Listen to your body.
- No matter how hard it is, DON’T QUIT.
More great advice, information and help from some amazing MSers
Not everyone’s MS is the same. What course of treatment works for me, for your cousin’s best friend’s boyfriend’s grandma, or your neighbor may NOT work for you. – Erin
Kick people who tell you about someone they know with MS climbing Everest or cycling around the world. Oh, and get the old person attitude of saying what you think. – Leigh
You are the same person you were before you were diagnosed. Don’t give up. Your life is not over! – Cheryl
Don’t start the meds the next day. Investigate, talk to others who use the meds, read up on them, join MS groups, get a couple of 2nd opinions, find a neurologist who knows about MS (not all do). Do some investigating on your own. – Melissa
Let go of the stress…including friends and family that drag you down. And be happy. It’s a new life direction and it’s okay. – Vonn
It’s time to take exceptional care of yourself in EVERY way because you are sick and need it. And your life will thank you for it. Don’t listen to the horror stories, just live it up and REFUSE to LOSE. Rest when you really need to but not so much you forget how to walk. Practice walking every day so your brain always remembers how. – Chelle
Be who you are and not a diagnosis. – Chris
Be positive, it isn’t the end. It is the beginning of a new chapter in your life. It ain’t all bad, just a test you will learn to endure. – Tony
Find the happiness, there is a silver lining to everything. Take the time to look inwards to develop the ability to laugh at everything. We are on this earth for however long…enjoy it. – Gary
Be smart with your health right off the bat. Make the changes now, not later. – Krysten
You know that song by Time McGraw, Live Like You Were Dying? Listen to that. Then pick yourself up and give it your best shot. – John
Drink lots of wine. :))) – Aistė
It’s not a death sentence, just a hurdle in life. Life goes on and you are the one who decides how you are going to live it. – Tina
It does get easier. In the beginning you’re just so overwhelmed. You learn your limits and drugs / therapies that help. It just takes time. – Lindsey
Don’t tell everyone right away, just those closest to you. I made that mistake. I spent most of my time trying to help everyone else through my diagnosis. People created so much drama and negativity. I wish i would have waited until I was more adjusted myself. – Cindy
Live large…do not put off hiking, adventures, etc. – Jill
Don’t wake up looking for your MS symptoms. Get on with your day just being you and live your life. Be prepared to rest and alter your day if your MS decides to appear. Sometimes it does good to slow down and “remember to smell the roses.” – Jacki
Relax…as impossible as it seems, just take one minute at a time at first. Relax and just do day by day. No expectations or conceptions, just go with it. Ride it for a while. See how it feels until you get your feet back under you. – Susanne
Just because they are doctors that specialize in MS doesn’t mean they walk with it. Research the things they tell you that sound off or weird. Get 2nd opinions. If your gut says no, then it’s probably a no. – Chula
You are allowed to fall apart…for a little while. Then get back up, smile and get on with it. – Odette
The journey has a lot to do with you…your attitude, discipline, diet, exercise, supplements. The best doctor is Dr. You! – Vince
Hold on, it’s a bumpy ride. – Shari
Know that your MS is unique to you and you only. Don’t get scared if you know of someone with a hard hitting, rapid progressing form of the disease because that doesn’t mean it will happen to you. Listen to your body and do what makes you feel better, and never underestimate the power of exercise, healthy diet, rest and laughter. – Danielle
Say hello to the new you. Never compare yourself to who you have been. – Sara
Never let anyone, especially yourself, make you believe that your symptoms are not real, or not that sever. They are real, own it, accept it, learn from it, and learn how to be happy around those limitations. No matter how many comparisons people make, remind them (and yourself too) that they are irrelevant to your issues. Your MS symptoms are just as valid as anyone else’s medical issues. You have value, and the hardest work you can do is making sure you believe that. When MS symptoms hit…and they can hit like a truck, you are valued. You are valued in those who love you, those who treat you like a person, and most importantly, you are valued by yourself. The most important person to be valued by. – Rich
Always remember you know your body better than anyone else. Every day could and may be different, but try your hardest to live in the moment. – Nicole
Stay away from non-therapeutic people. Have faith, miracles happen. – Karolyn
Get YOUR GAME FACE on! – Jyme
We all have bad days, but make sure you limit them. Set a limit. After 2 days, force yourself out of bed, shower, get dressed, and go out in the real world. – Loretta
The fear fades. Life moves forward. Don’t rush it, it’ll happen. – Amanda
Someone will love you for you…be patient. – Steph
If your body says it’s tired, rest! I used to think I was Wonder Woman and had to do everything in one day. My philosophy is that it will be there tomorrow. It’s not an easy journey, but you got this. I am a firm believer that if He (God) brought you to it, He will bring you through it. – Cathy
Pace yourself and only do what you can comfortably do without tiring yourself out. Learn to accept help, even if they fold the towels differently than you. Some things are more important than a pristinely clean house. Live and enjoy your family. – Nana
Only read stuff online from reliable sources. I over read and freaked out. – Netty
The worst scenario you have in your head may not be your destiny. Take it one day at a time. There are scientists working on this, and I think there’s light at the end of the tunnel. Keep pushing on. – Jennifer
Life as you know it will be different…not dead or gone…just different. So choose to make decisions of how to live you life in your own way now and get used to working at your own pace and not what others expect of you. Learn to be selfish and live life doing what you love because the last thing you need is stress – Melissa
SUPPORT of friends and family are IT! You will need it to get through relapses and tough appointments. – Nyssa
Do your best to get back to the place where you found the world beautiful. Your best ally in this fight is a good attitude! – Scotty
Everyone lives with things everyday: cancer, back pain, chronic migraines, etc. and that’s exactly what you do with it…LIVE!!! – Dana
Pray lots. Pam
…When you find that you can’t do the things you like to do because your MS won’t let you, be creative and find other ways to make it easier to do those things. Find a new hobby that your MS will allow you to do and don’t be afraid to ask for help from someone. Allow yourself to have more time to get things done. I like to have supper at 5:00. I would start at 4:00 and have no problem, now I prepare everything ahead of time like cutting up my onions, peppers or any thing else that can be done early. Just learn to adjust your routine with your MS so that you can still feel like you are on task. Give yourself extra time to get to where you have to go. Leave earlier then you would normally leave so you don’t feel rushed. Do the things you love but in a different way. – Karline
Promise yourself every day that you will love yourself enough to ask for help when needed, give help to others like you and, understand you never have to go through this alone. We are all listening and waiting to help you too. – Deborah
This episode will improve, but your health will now be unpredictable and never the same again, so make the most of life when you’re feeling good and be prepared for set backs. – Stephanie
It’s ok to know your limits and say no to things you would otherwise do…Your body will appreciate the rest. – Lindsey
You have not changed who you are. You know what is going on in your life better than any one else, so take care of yourself and don’t listen to everyone who has something to say about what you should or should not be doing to make YOU Better. They are not Living with MS and are not you. – Lydia
Learn to laugh at yourself, because the world is going to laugh. BE KIND TO YOURSELF: allow yourself to have those days when you don’t belong on a ladder to change a light bulb and perhaps shouldn’t leave the house unescorted! – Kathy
You are always gonna be YOU, never lose sight of that. – Evie