There is never a shortage of well intentioned people offering up helpful suggestions to get you through any trouble you might have, whether you want their advice or not. Having MS, I get a lot of unsolicited well meaning, well intentioned advice.
Sometimes I can listen and understand that the advice comes from a place of concern and caring, but other times it’s hard sit and listen to people prattle on about things they don’t understand. I appreciate the efforts that people make on my behalf, and I understand the need to do something in the face of total helplessness. However, it can be exhausting trying to keep up with everything people suggest, and sometimes I just can’t take it.
What I wish a lot more people understood about MS is that it’s different for everyone. It’s nice to hear stories about people who have MS and are doing well, and what they take that got them to that point. It’s encouraging that it’s not all doom an gloom. However, what helped your aunt get to where she’s at isn’t necessarily going to work for me. I wish that somewhere out there, someone has discovered the secret to living well with MS that fits everyone who has it; unfortunately, we all have to find our own way of living. If I tried every idea and suggestion given to me, I would be spending all my time chasing clouds and wouldn’t have time to actually live.
Recently, I was accused of being too much of a downer because of my MS, I wasn’t trying to do anything positive, I wasn’t doing anything to better my situation. That accusation threw me for a loop at just how insensitive and insulting it was; I may not know the “right” way to deal with what’s going on, but I’m sure I know more than someone who doesn’t suffer from a debilitating chronic illness. Unfortunately, there are people who think that just because you don’t jump on the latest super food fad, the right kind of vitamins, or see holistic practitioners, you’re obviously not doing enough for yourself. As if eating exotic berries with pins through my body and reading how Montel Williams treats his MS is going to make a significant difference in my life. It’s so beyond insulting to suggest that someone with MS or any chronic illness isn’t doing enough for themselves just because they don’t follow fads. If there is a right way to deal with this; I’d love to meet the expert.
While well intentioned advice comes from a place of love, too much can start to feel like a burden. What do I do with every suggestion thats offered? Am I going to grievously insult someone because I didn’t immediately buy a bunch of açai berries, or the brand of vitamins or herbs they suggested I try? Do I beg my doctor to try new medicines and treatments that may not work with the type of condition I have; just to make someone happy?
The thing to remember is; people with chronic illnesses really don’t need others to try and help fix what is wrong. Having a chronic illness like MS by definition means that the condition is never going to go away and everyone eventually learns what works best for them in terms of management. It can get frustrating at times on both sides when advice is always being offered and yet not taken.
Some people might argue; Why would you say that you’re feeling badly, or are having a hard day, if you weren’t wiling to listen to a few helpful suggestions to make you feel better? Why come into work if you’re in pain, or go to a party if you’re tired? It’s confusing to know what someone is looking for, and the appropriate ways to respond. What I feel that many people don’t understand is; the world doesn’t stop going when you’re not feeling well. When you have something like MS, staying at home and waiting until you feel better could take a long time, and in that time you miss out on your life. I have to continue living life through the pain, discomfort, weakness, numbness, and fatigue. And when someone asks “How are you doing?” the response I give may have less to do with getting sympathy and more to do with the fact it takes a lot more energy to bullshit my way through the answer someone wants to hear than it does to say exactly how I’m feeling.
Does this mean I don’t want anyone, ever, sending me things they read on MS, or sharing what a close friend did to manage pain? Of course not! What I really want is some understanding that I can’t take everyone’s advice, and it doesn’t mean I’m not doing enough to help myself. It’s nice to know that I have so many good friends and family out there willing to take the time to research MS; just try not to be offended when I chose to manage my MS my way.
Amen!
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