One of the most frustrating games we can play is “if I knew then what I know now”. It’s almost guaranteed to show us something we “should have done”, but didn’t.
What can make the “If I knew then” game so prickly is that we tend to beat ourselves up about not knowing these things sooner. Especially when we notice precious time and money lost while not knowing.
Although this list is not exhaustive, these are the five things I wish someone had told me in January 2000 when I was diagnosed with MS. If you see an a-ha on this list, or a reminder of something you’ve forgotten along the way, notice it with kindness and an open heart. No beating yourself up allowed – ever.
1. What people say will happen with your MS may never happen.
MS is an unpredictable illness – true. That means the other side of that coin is also true. When people tell you a) what will go wrong with your symptoms and b) what has happened with their symptoms, know that those problems may never happen to you.
It can be scary to hear people’s opinions on how your MS will affect you. Unfortunately, these predictions are often quite awful. But know that those are their opinions and have little or nothing to do with you – especially if they’re not your doctor.
2. What you expect to happen matters.
It is well proven that our expectations of an outcome subtly change how we respond to our therapies, others and ourselves.
For example, I noticed that when I believed that a certain therapy would work, I pushed through and stuck with it. If I had thought that the therapy wasn’t working, was bad, or unnecessary, I would have skipped the effort many times – and affected my health in the process. Our expectations and beliefs are crucial. They determine how we act and the results we get.
3. You can make your MRI’s way more comfortable.
You have a choice- even if the hospital is trying to make you wear a gown and take a number. Stand up for yourself and do what you need in order to feel relaxed. Being as comfortable as possible during MRI’s is essential – I even left one imaging center because they didn’t share my view on this. My new imaging center is amazing and I’m so glad I advocated that for myself. You can do that, too.
Wear your PJ’s? Yup. Create a spa-like experience? Uh-huh. You have options. Don’t be afraid to ask for them.
4. Drug companies really do want to help.
Co-pay assist programs aren’t just for those earning a certain income each year. A sliding scale can apply even if you make a pretty decent income. Give your drug company a call and ask. I shied away for years because I thought I wouldn’t qualify and should pay full price if I had the means. Honey, no. It never hurts to ask and drug companies have plenty of dough.
I know there’s also a whole line of politics behind Big Pharma and who actually pays for drugs once it all trickles down. My honest outlook – who cares if it’s not you. Take advantage while you can.
5. You are strong enough.
Strong enough to get through this, yes. But I’m talking strong enough to get on top of this, look it in the eye, find what’s amazing and go out there and live your life.
You don’t need this to be a fight against MS – that means you’re in a fight every day for the rest of your life. That’s exhausting. You’re strong enough to live well without even raising your blood pressure. No anger needed.
It may not be obvious now, but you will wrap your mind around this and come out miles ahead on the other side.
*Bonus* Staying positive doesn’t mean unicorns and daisies all the time.
It can feel like we need to backtrack on our positivity. “I feel good, but….”
Like being too positive means we all of a sudden can’t discern reality, so we have to pull ourselves back down to “reality”.
Staying positive isn’t synonymous with ignoring reality. Being positive means knowing deeply that you can overcome anything. It means allowing the bad – because you know the good isn’t lost forever. It means allowing yourself to be exactly who you are. Loving every bit of it.
Knowing that it’s positive to feel “negative” emotions was a huge a-ha for me. Allowing myself to feel all my emotions was a positive experience made me rethink optimism. In fact, I was a “realist” for a long time. Until I recognized that “realist” is a fancy word for “pessimist”.
I’m not mad that I didn’t know these things – but don’t get me wrong – I sure wish someone had told me. My hope is what I’ve learned will bring a little ease to your quest to live well with MS.
I figured all of this out on my own. And I know you would, too. But a little help never hurts. Plus, I know you would do the same for me.
What about you? What helpful tidbits do you now know that you wish you knew then?
Leave your reply below and share what you have learned that helped you!
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I love!!! And have also learned to live by these exact realistic mentality and some words of wisdom. Everything you have written, I live and have lived by and believe so strongly by them. When reading this it was honestly like I was reading all my thoughts and what I typically tell others. I unsuccessfully tried to bring my dad to this same mentality during his fight to cancer couple years after my diagnosis of M.S. back in 2000 at am early age of 17. He unfortunately was too sick and living uncomfortably that he was beyond this thinking. Was beyond wanting to live longer in those conditions! Quality of life just was not there. He made it a couple weeks after my 20th birthday sadly but he was no longer suffering. So believe and live by the ” Mind over Matter”. Don’t let “IT” consume you, you’re SO much BIGGER than “IT”. Together strengthening each other physically and especially mentally as well, we will conquer a lot of illness.
Hi Tara!
Thank you for your comment! I’m so glad you’re finding the love in this. I’m sorry to hear about your Dad -It can be hard to make people understand what we know is truly helpful – and even harder watching them deny it. The best thing we can do is live it ourselves and be a beacon for those ready to learn. You’re so right – we are so much bigger than “IT”. We’re already conquering. Love and Hugs- Andrea
I was dx in 2000, and the thing I wish I had listened to was EXERCISE. Being the naturally lazy person that I am, I didn’t do much striving in that direction. I really REALLY regret it. We are made to move and with a nervous disease like this, if you don’t keep moving, you WILL lose it!
Yes! Thank you for commenting. I totally agree that working out is super important especially if you have MS. But- it’s never too late to start. Even if you’ve lost some function, it doesn’t mean you can’t find a way to exercise the function you do have. And more studies are coming out that say working out can help symptoms. So don’t give up! Just because you didn’t start when you were first diagnosed doesn’t mean you can’t get into it now. Take care- A
Love love love. Wearing pjs to MRI. It can be better and I am going to be more positive. Thanks
Love this! Yes to Pj’s. 🙂 Hugs- Andrea
Hi
I was just diagnosed in Oct. 2017. Thank you!
Hi Ruth!
I’m sorry to hear about your diagnosis, but there is so much you can do to help your health. Please know all is not lost. Don’t hesitate to reach out (you can reach me through the “contact” tab) if I can be of any help to you. Huge- A
Thank you so much for this. My mom also had MS and lost her battle 16 years ago at the age of 52. Watching her deteriorate was excruciating, by far the hardest thing I had ever had to do. So when I was diagnosed, I thought that was my fate. I was diagnosed 8 years ago, thankfully I am strong & fighting daily, so far I am winning.
Thank you for your encouragement.
Tanja
Hi Tanja!
I’m sorry to hear about your mom. It’s so hard to watch people we love go through this and I’m glad to hear you’re doing well. There is so much we can do to help correct the path of our diagnosis. Courage is a crucial component to have on our side and it sounds like you have a ton. Stay strong. Hugs…-A
I was diagnosed in August and missed 3 months of work and didn’t want to be the person that MS was turning me into. Thanks to my physical therapy my balance and mobility returned. I’m back at work and if I could only figure out how to conserve my energy life would be a little better.
Hi Laura! Thanks for the comment. Physical therapy is golden. It can help to restore so much. You can learn to conserve energy as well- don’t give up hope. It is possible. Take care- Andrea
Ask your neuro or copaone itself they put out a book about energy conservation. My Nero gave me one and it has helped quite a bit
Great reminder, April! Often doctors and drug companies give out books for free. These books are written by people with a diagnosis or other doctors and give great tips on managing things like energy.
I was diagnosed in May of ’17. My energy was zapped for about a good year. I still work and that was about it for the day. I had nothing left after work and a 40 min drive home. Everyone is different but mental stress is what seems to zap my energy. It seems like by body settled in and I’ve learned a few things that I will share with the group responses. Still hope your energy will improve. 😊
I was diagnosed 20 years ago. Though I have lost some function (and my high heels!) a positive attitude is imperative. I exercise 5 days a week at a local females only gym. A good healthy diet and vitamins are important too. Keep moving and treat yourself like gold. It has helped me navigate through this disease.
Yes to all of this! And high heels are overrated. 😉 Hugs- Andrea
What started out as treatment for sciatica and a left leg not cooperating has turned into a full workup to confirm MS. I am 72 and still working but there are many days I need to rest to get to the parking lot to go home. I think I now know
what fatigue is. This may slow me down but that is not necessarily bad. Changing my habits is a whole new career. It is what it is so I want all the details. Thanks to everyone for sharing your experience. By the way, I think high heels would be a terrific way to do a balance program!
I too have to sit and rest when leaving the store to get to my car . Just for a few minutes.thats all I need…
Hi Kj! Sometimes a bit of rest is all we need – then it’s back in the game! 🙂
Hi Stan! Creating new habits that work is a part-time job. I’m glad to hear you’re working on it! Please reach out if I can help you with any of those details. -A
I wish I knew I’d be bound in the house.
Not go on events, even on important ones.
Hi Nauman! Thanks for your comment. I hear you and it can be tough sometimes. The good thing is that you’re reaching out and being heard. Continue to ask for what you need and want. Many hugs. -A
I was DX with MS in 1995. Still doing fine, I have also given up high heels, found it to be fine to wear flats with dresses and skirts. 😊 I take vitamins and eat a healthy diet. There are days, were I feel lonely or depressed, but quickly get over it with the help of positive thinking. I have a new thing going on. My new definition of MS is, Mentally Strong 🤗 this new definition helps me through the day 😀 happy thoughts to all of you.
Hi Pia! “Mentally Strong” I love that! Great job keeping it positive.
The neuro that I use has the scan center inside the clinic. So I have gotten to know the staff there pretty well. I remember the first scan, went in in blue jeans, sweater, makeup, the whole shebang. After talking to the staff that day, who made me wipe of my makeup, told me to relax and stay as calm as possible. Now, I go in ( most of the time without a bra, gotta take it off anyway) comfy clothes and sleep during the time of my scans. I love the fact they have headphones so that when I wake up I can still listen to music. A win for all of us there.
I was diagnosed in 2017. I work a high stress job and the fatigue, heat intolerance, and focusing issues were almost a total game changer. In the past year, I have learned “preparing to preven”t is key. I turn the fan on when I walk in the office whether I’m hot yet or not because symptoms act up worse for me (and I hear for most) if I overheat so I prevent as much as possible. I keep fluids handy and after learning the hard way tooo many times at outings and such, I go more prepared with a my portable fan for around my neck and access to water. I always overheat when I work in our medication room (I’m a nurse supervisor) logging out meds or putting up supplies. I think for so long I was in denial or bitter and I would think this time I wouldn’t get too hot or that I didnt want to be “different.” The fatigue is worse when I’m stressed. With my personality and life, I haven’t done a lot with prevention on this one, though I am knowing what will reduce the stress quicker…nail time with my daughter, alone time, and striving for an attitude of gratitude. My brain fog and focusing issues quickly made this former annoyingly chipper morning person into, well… not one. Lol. This one is really where my husband steps in and my pride steps out. He reminds me of things, helps get me going in the morning in areas that use to be “my job.” He fixes my coffee, sometimes reminds me to take my Vyvanse, and ignores my snippiness. I love the part you said about not looking like this as a battle to fight everyday. That’s what we are use to hearing is that someone is “fighting a battle with this” or” lost their fight with that.” That is an exhausting way to think of it. Thanks for enlightening us on that. 😊
Thank you for your comment, Brenda! Your preparations are great and will be a great help to the readers. After hearing so many people repeating the “battle” narrative, I realized how utterly unhelpful it is to me- and to others to keep believing it. The answer is always kindness – for more energy, less stress, and a happier day. 🙂 I love hearing that your hubs is so supportive. It can make a huge difference!
I was dx’d in 2013 weeks after finishing nursing school 😕 because of my diagnosis, it became impossible to work long hours. Now I’m finding I really want to strive to be better than ever, I’m hard headed so it’s never hurt my feelings to work hard. Reading everyone’s comments is really inspirational. I just wanted to say thank you! Keep up the fight everyone!
Hi Samantha! Flipping the script on work and rest can be hard. But good for you for embracing that. Keep on striving – you absolutely can be better than ever. Take care- A
What about changing their diet so they don’t have to suffer or take any useless harmful drugs!!!
Please coach them in the right direction that helps them. There is no need to suffer. You are not helping them in anyway!!!
Please educate yourself before you call yourself a coach.
Hi Dee! Thanks for your comment! Absolutely nutrition plays a role in healing and I have many resources about that on my website AndreaHansonCoaching.com that address this very topic- including my book “Stop Carrying the Weight of Your MS”.
Among other things, I help people know what food and therapies are right for their body. And yes- some people find that disease-modifying drugs stop the progression of their MS. As a master certified life and mindset coach I don’t begin to say what’s best for someone else – and I certainly never judge them for their choices.
I empower my clients to break through the (sometimes contradictory) information and confidently make their own decisions about their health-so they can get their life back on track and feel like themselves again.
Good article. I was diagnosed Halloween 2017, which seemed appropriate for a zombie disease where my immune system is eating my brain 🙂
For me it was a relief to finally know what was going on and to know the best ways to cope, which included physical therapy. So my advice to newly diagnosed is to get a referral to PT, and thus know what muscles to target and how to do it.
Karen | https://OurCarpeDiem.com
Hi Karen! Thanks for your comment. I totally agree- PT is amazing. They give you tips and exercises to help everything from stiffness to how you’re walking. I know some people are hesitant to follow through on the exercises, but they can be life-changing. If you have symptoms involving muscles or joints- definitely check out PT! -A