Have You Ever Tried...?
When you suffer from a chronic illness like Multiple Sclerosis, you are bound to encounter a lot of well-intentioned folks who want to help you. Often grasping at whatever they have seen on the internet, their favorite suggestion seems to always start with “Have you tried”, followed by the latest craze that they have happened across. Have you tried this magical kale diet? Have you tried getting stung by bees? Have you tried stem cells? Have you tried being more positive? I, like many who battle chronic illness, could go on for days with examples, because we hear them so often. While we appreciate your great intentions, I have to admit that these suggestions aren’t really helpful. In fact, they make many of us feel a bit worse.
You’ve come across something
You read about someone with my condition, they tried the magical solution that you are suggesting, and they are now in much better shape than I seem to be in. You may even think they are cured. Maybe it was someone you know, maybe it’s even you. However, chances are high that it was a clickbait-y headline you saw on the internet (and maybe didn’t even click on and read). Regardless, you thought of me, your friend or acquaintance, who you associate with Multiple Sclerosis. You want to be helpful, either genuinely or because you want to feel like a better person, so you have to ask us - have we tried it??? You’re thinking that it seems to have worked for you or someone you don’t know on the internet, so we should definitely try it!
You mean well, but...
As well-intentioned as you may be, there are so many things upsetting about your question/suggestion. First up, it kind of sucks being thought of as the person with MS, the person that is sick. If I haven’t talked with someone much and all of a sudden I hear a suggestion from them about how to improve my disease, well, that doesn’t give me a good feeling. I appreciate the thought, but I also want to be known for more than being the sick guy. If you haven’t spoken to me for a period of time, please don’t make the reason you start something you’ve seen regarding my disease.
Assuming that we're not taking our MS seriously
Another thing: again, while you may mean well, suggesting some new form of treatment really does make us feel like there is something wrong with us in a number of ways. It must look like I’m really sick for you to suggest something like that. But also, it makes me think that I must not be taking this whole disease thing seriously. That must be what you think, because if I took my disease seriously, wouldn’t I have already heard about this magical treatment? Treating a disease like Multiple Sclerosis is a complicated affair, particularly because each person afflicted with it tends to respond a little differently than others. Please take my word though, most of us are very well aware of what treatments work and don’t work for us. More importantly, I assure you we have ourselves in a position to learn about the latest and greatest advances. The real advances, not the ones you see on the internet (please remember, just because something is on the internet doesn’t mean it’s true. People get paid by advertising on the internet, meaning many places get paid if you click on their page. Not everyone is honest, particularly when money is involved, so please, don’t assume everything you see on the internet is true).
Even if you have firsthand experience
When suggesting something, even if you have the disease yourself, please, please, please remember that we are all different. I get that you are excited something worked, or appears to have worked, for you, but we are all individuals, and most of us have treatment plans in place. It’s so important to remember that everyone with this disease has been going through an incredible, often hard, journey. To quickly suggest something out of the blue, because it seems to work for you, makes me feel like you are negating all the work I’ve already done. It also makes me feel like you want to talk about yourself and not that you genuinely want to help me, it makes me feel like you are selling something (and in some cases, people are).
Just ask us about our day
So all of this is just a heads up for people, a chance to see what some folks might actually think when you’ve asked them if they’ve tried a certain treatment. Most of us absolutely appreciate that you cared and may be well-intentioned, but please, give a quick pause before asking that question and think about some of the things I talked about here. At the end of the day, if you really want to help me or someone with MS, read and ask us about life with the disease, our symptoms, what our struggles are. Not how to cure it. Even better, just ask us about our day and how we are doing, just talk to us like everyone else and trust us that we can handle the treatment part.
How many specialists did you see before finding "The One"?