Unsolicited Advice: When It Backfires
When you suffer from an incurable disease like Multiple Sclerosis, one of the many unique situations you come across, again and again is when friends, family, and even strangers bombard you with unsolicited advice on how to deal with your illness. Once you get diagnosed, you find out that everyone you know has a third cousin’s butler’s gardener’s grandmother who not only had the disease, but did something to feel better and you should do it, too. When it isn’t someone they “know”, it’s something they’ve seen on the internet (so it has to be true, right?). While all of these people are well-meaning, it sometimes makes me feel a way that they are unlikely to expect. Occasionally, it makes me feel like they must think I’m to blame. That whatever I have been doing with my life led me to this and that whatever I am doing now isn’t enough. Please read some more as I try to explain.
How this makes me feel
Now, before you suggest that I am misunderstanding them and that they are simply trying to help, I’ll reiterate, I know they are well-intentioned and I count myself lucky to have such people in my life. I don’t expect them to realize this (though maybe if enough people read and share this, maybe more will). I am generally appreciative that they care to offer a suggestion, but I wish they could understand how that makes me feel at times. To stop and tell me (or even forward me) some outlandish claim about my disease often feels like, at best, they are telling me I am not doing all I can to fight the disease, and at worst, that this is all my fault. I must be so bad at having my illness that I wouldn’t have heard about this miraculous information you are sending my way.
No diet or exercise can "fix" me
I’m clearly not living correctly and that’s why I have this disease. That is especially how I feel when I am given some of the more farcical suggestions, like, oh, so and so did this diet and it cured their illness (sorry, if you feel better on a diet, that’s great, but that doesn’t mean you are cured). There is NO cure for this disease, no matter how badly you want to believe there is (as an aside, we should all have a decent diet though). If there were, we’d all be doing it. This is especially a slap in the face when someone suggests that a diet or exercise or something of the like can fix me. It really is like them saying, “oh, well, you’re so unhealthy, that’s why you have this disease, if you did these simple things and were just more healthy, then you’d get healthy”. Again, I know they don’t mean it that way, but still, I sometimes feel like that’s what they are saying.
We're just tired
This feeling that we must not be doing all we can extends to other information passed on as well. Sharing that latest article on fixing something MS-related in mice? Of course, that’s well-meaning, but, please don’t assume I haven’t seen it. I guess that’s the gist of all this, don’t assume we aren’t doing everything we possibly can to fight this disease. Trust me, we’re on top of things. This disease is awful and most of us are doing absolutely everything possible to fight it. This fight is extremely exhausting too, which is why some people can see a gesture that, ordinarily is wonderful and confuse it for something that’s not. I guess that’s how these feelings happen, we’re just tired of fighting, every single day, doing everything we can to beat this disease.
Now, I admit, I didn’t know I had some of these feelings until one of my readers mentioned that they felt this way to me. In some ways, this started as an attempt to explain how they feel, to put it into the words that they felt they couldn’t, but using the personal pronoun “I” because it was easier. As I went along, I realized that I occasionally feel this way too, and didn’t even realize it. I think most of us are always happy to see people care enough to offer advice, however, when it happens so much and isn’t thought out, it can actually backfire and be detrimental.
I have the hardest time with my MS during the following season: