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.
Update: I recently went over this list again on an episode of the Live Your Life, Not Your Diagnosis™ podcast with new thoughts and insights. Listen here or wherever you get your podcasts.
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!