The Unsolicited Advice We Get
Life can change a lot when you are diagnosed with a chronic illness like Multiple Sclerosis. You slowly learn that, over time, the way some people interact with you will change. Some people will be ignorant, some will try to pray for you, and some will try to fix you on their own. It’s this last situation that I want to talk about today. Specifically, the massive amount of unsolicited advice you get when someone learns you have an illness. Many of these people mean well, though some simply think they know better; it can come from those with MS and those without. No matter who it comes from, it can be extremely overwhelming and unwelcome.
Those without MS
I’m sure many people reading this have experienced it. Someone you know, it could be family, friends, coworkers, even just an acquaintance sees something about the disease online or “knows” someone with MS (it always seems like it’s their great aunt’s college roommate’s sister or some other odd connection). Despite not being a doctor or even having first hand knowledge about the disease, they feel inclined to inform you about what they’ve heard. This should be nice, right? People are trying to help. The thing is, when you have an incurable disease like MS, you tend to be on top of any major developments. I appreciate people’s sentiments, but trust me, having a painful and debilitating disease tends to make you follow all of the right things to keep informed. I worry that my expression or response isn’t exactly a happy one. OK, I know it’s not, because I’ve heard the same news from ten other friends before you. That and I probably also heard about someone trying whatever snake oil theory involved more than a decade ago. So please, forgive us, but we get a tremendous amount of this.
Also please remember that we have a complicated disease, we see specialists for it, and we are doing whatever we can to feel better. So while you may mean well, and a kale smoothie seems to work great for you, understand it won’t stop our disease. Giving us advice like “oh, you just need to exercise more” or “you need to sleep more” is in no way helpful. Trust me, we are already trying all of those things. We are also under the care of an educated and experienced professional (or should be). We will complain, because it’s hard not to, but that doesn’t mean we aren’t already trying to do everything in our power to feel great. Remember that MS is a real disease, and giving us some basic advice really diminishes that. It’s disrespectful. That said, I’d love to hear about your kale smoothie, just not if you telling it to me because you are expecting it to cure my MS!
Those with MS do it too
More and more, I’ve witnessed people with MS who are feeling good try to push their treatment onto others. They think they’ve conquered the disease and now they need to spread the word. They’ll tell everyone they come across about it, they’ll even create their own “expert” Facebook page. They essentially think they’re a hero and many look to become an “MS Celebrity” (which should never exist). While I am happy that someone feels good, I wish that everyone would remember a few things. For one, this disease is filled with peaks and valleys; having MS is a rollercoaster ride. You will feel good for periods of time and bad for others. This disease is also a long game, and whatever you are doing or feeling at any given moment is not indicative of your future. Maybe you feel good because you stopped your medication, well, that may still have a profound effect later in your life. The treatments we use for the disease are always for later, not for now. Yes, there are medications and actions we can take for symptoms, but those are separate from the what we call the Disease Modifying Therapies (DMTs). So you may feel great in your fifth year of the disease, but how will you feel in year ten or twenty? Symptom-free does not ever mean disease-free.
It’s been said many times that those with MS are all snowflakes. It’s so true. We all have different symptoms and progression. There is overlap, but everyone’s disease course is different. Remember that before you extol the virtues of your treatment plan on someone else. It’s wonderful to see people sharing information, but there is a fine (and important) line between sharing what works for you and telling others that they need to do it too.
The “C” Word
When it comes to sharing something with me, one thing I wish everyone would realize, is that if something uses the “C” word (meaning cure), it’s probably a false hope. We see this a lot with MS. Every now and then, someone exclaims they are close to a “cure” or already found a “cure” or this one person is “cured”. I’m sorry folks, there is no cure for MS. They are likely not even really close. They don’t even really know the cause yet, let alone a way to stop it for good. That doesn’t mean that every time one of us sees that “C” word, that we don’t get excited. That’s a pretty awful thing to go through, those emotions you go through, even if you should know better, getting that hope that maybe someone found something to stop this disease. It is always wrong though, or it’s a theory, or a ways off, or worked in a very small sample size. So please, be very wary of anything using the “C” word and think before you share it. Don’t let your emotions get the best of you. Trust me, if a real cure was found, we’d know about it. Despite what conspiracy theorists would have you believe, there is a lot of money in a cure.
There is no cure, but there is still a lot to be hopeful for. We already have around three times the options of disease modifying therapies than we did when I was first diagnosed. That’s HUGE. We have more options than we’ve ever had and that’s a reason to rejoice. We have those options because people spread awareness about this disease. They spread information on fundraisers like Walk MS, Swim MS, the MS Readathon, and Bike MS. They’re getting closer to that “”C” word because of all of that. So please, share things that are MS-related, but understand what you are sharing, don’t buy into hype, and don’t try to fix us with an anecdotal tip you heard or saw from someone secondhand. Please do talk to us about MS, but don’t focus on a quick fix that doesn’t exist.
How many specialists did you see before finding "The One"?