22-05-2025
The Internet's Best Advice for MS
What's the best advice you've ever gotten about living with multiple sclerosis (MS)? What one piece of advice would you give a friend who has just been diagnosed?
Over 40 years, I've received and given out lots of advice on living well with chronic illness. I wrote a book about it called The Art of Getting Well. I've read other books written by folks with MS and learned from all of them. Last month, I asked the WebMD MS Facebook community what was the best advice they would give someone with MS.
Bottom line: There is no one best piece of advice for everyone. I have learned that the best advice varies from time to time, and person to person.
But wait! Now there is artificial intelligence (AI), bringing all the advice of the internet together in one list. You can see it on Google, and most of it seems right to me. Maybe we don't need human advice anymore.
Or do we? Let's look at what the WebMD Facebook MS community says, compare it with Google's AI-generated list, and see what works for us in the real world.
Community Ideas
People posted so much great advice. Most common:
'Listen to your body.' 'Get enough rest.'
'Keep moving.'
'Take one day at a time.'
'Don't listen to everything your friends and relatives tell you.'
'Stay as positive as you can.'
'Discover your own limits.'
People disagreed about limits, with some saying push through them, and others saying stop when you get close to your limits. I'm with the latter group.
Several people advised getting on medicine as soon as you are diagnosed. Others cited the importance of a healthy diet and reducing stress. Many highlighted patience as key to living well. One said, 'If it doesn't get done today, it can get done tomorrow.' And someone else commented, 'Find something good in every day.'
I agree with most of their advice. But how does our community, a bunch of lay people, stack up against the wisdom of the entire internet as found by AI?
AI's Top Advice
Here's what AI had to say (in boldface), followed by my own comments.
Healthy diet. Well of course! But what does 'healthy diet' mean? I would agree with some in our community that it means 'no sugar.' But others recommend eating a lot of high-nutrition food, like vegetables and proteins in large quantities.
Accept that you have a significant illness. Denial won't do you any good. You may not be able to do everything you used to do or want to do, and that's OK. Acceptance may take a while, though.
Exercise. At your own pace.
Reduce stress. I would add: Learn to cope with it better, too. In our place and time, stress isn't going to disappear.
Avoid alcohol. At least in excess.
Get more and better sleep. This is crucial in any chronic illness. Learn sleep hygiene, and modify your environment or schedule, if possible, to make sleep easier.
Reach out for help. To people you know and professionals. Don't be afraid to ask. Most people like to help, even strangers.
Avoid MS symptom triggers. This is easier said than done. First, you have to identify what and who your triggers are. For many of us, that includes heat, over-thinking, and fatigue, but each of us needs to find their own.
Conserve energy. Take frequent breaks. Don't overschedule and don't multitask.
Customize your environment! This is so important. Make your spaces as comfortable and accessible as you can. Don't wait too long to get into an accessible place.
Deal with depression. With self-care, therapy, life change, or medication.
Don't delay MS treatment. OK, here's one place I disagree with you. In my opinion, we should each take our time and do some research before starting a new drug.
Eat fiber-rich foods. Yay vegetables!
Keep moving. I read this as different from 'Exercise.' Our capacity and opportunity for movement becomes less as MS gets worse. But we should take our opportunities to move in whatever way we can. Stretch or move frequently instead of sitting quietly in one place working or being entertained.
Also, as someone commented, 'Keep moving mentally and spiritually.' Movement is life.
Keep the brain constantly active. Another place the internet is wrong, IMO. Keeping the brain active is good, but not constantly.
Meditation. It seems impossible at first, but it gets easier and more helpful. It will calm us and often brings insights we can use.
Practice good sleep hygiene! It said this already (which I notice sometimes happens with AI), but it's worth repeating: Get More Sleep.
Take it easy on yourself. Judging yourself is never helpful, but when you have MS, it's ridiculous! Who are you comparing yourself to? Your pre-MS self? It's hard to avoid, and it's OK to grieve, but give yourself a break! Several times a day.
Track your symptoms. Learn what makes you better and what makes you worse. Write it down. Then act accordingly.
Stop smoking.
Looking over AI's list, I appreciate what AI and the internet can do. Still, they left a number of important things out. I guess AI won't make your doctor or my blog irrelevant any time soon. If you have things to add, consider posting them in our Facebook community.
