Some people think that being chronically ill is a learning experience. I don’t always think that is true. Sometimes being sick really sucks and there’s no silver lining to it, at least for me. However, I will say that I’ve gleaned at least one valuable lesson thus far: My health problems have made me far more mindful of how I interact with others and made me far less likely to offer unsolicited advice.
As I’ve gone along, I’ve developed far more discernment about the unsolicited medical advice I receive and the intentions of the people who offer it. A few individuals actually do have purely altruistic motives. They really think their suggestions will help you in some way, even if they don’t have a clue about your illness, treatment or life. As they say, the road to Hell is paved with good intentions. The concept of chronic illness that has no decent treatment options, much less a cure, flummoxes many people. If you have several chronic illness, it short-circuits their thought processes even more. It can take a long time to get these friends and loved ones to understand that some things just cannot be fixed.
In rare instances, friends offer medical advice because they honestly believe you’re in real danger. And sometimes, when they’re coming from an informed perspective, they’re on point. A number of years ago, for instance, I was bitten by a bat. The first doctor I saw shrugged it off and told me I didn’t need rabies post-exposure prophylaxis (PEP). I was willing to go along with that, because I really didn’t want to deal with a series of injections. A friend who had experience with veterinary medicine was very concerned and sent me some information from the World Health Organization. She let me know that a bat bite was considered a Category III exposure for rabies risk — the most severe — and urged me to at least call the Department of Health for a second opinion. She was absolutely, 100 percent right. The Department of Health immediately set up an appointment for me to file a report on the bat and start PEP. In this case, my friend’s insistence on that second opinion may have saved my life.
Unfortunately, there are also many people who don’t have a clue, much less my best interests in mind, when they offer advice. The din has been loud enough at times to make me want to cover my ears and scream at everyone to go away and leave me alone. At the bottom of the barrel: those who “helpfully” offer to sell me their expensive multi-level-marketing “miracle cure” supplements. There are those who think I am clueless and need their lectures and instructions, and those who want to convert me to their belief system. For some people I think there’s a need to control. There are people who have told me I can “choose” to be well or wish away my illness. There are other people who believe their special diets will cure whatever ails me. This unhelpful unsolicited advice comes from friends, family, random acquaintances, and, often, total strangers.
At the other end of the gauntlet, however, I have discovered treasured loved ones who listen without prejudice and are simply there. They understand why all the “helpful advice” is wearing me out. One friend and I even came up with a slogan: “If the sentence begins with “You should,” you shouldn’t say it.” If something is of grave importance, or if I ask them directly for advice, they’ll offer it. However, they are not going to try to direct my treatment. And I love them for that.
I’ve also become more aware of unsolicited advice when it crops up elsewhere. And it does. I’ve seen individuals online who have had their diagnoses questioned by random strangers. I’ve read comments on news articles from people suggesting treatments for celebrities they’ve never met. My heart ached for a mother who posted that her child was happy being bald, only to get comments from people advertising their MLM hair growth remedies. The endless parade of “you should” and “try this” and “why don’t you” is disheartening.
I can’t change what others say, and trying to do so is a losing battle. As long as I’m ill and alive, I am sure there will be unhelpful and uninvited advice lobbed in my direction. I’d wager that even after I’m dead, some people will still have something to say about my treatment protocols and decisions.
I have, however, changed how I react to it. At this point, if it’s not coming from friends, I’ll either completely ignore it or say straight out that I am not interested in unsolicited advice. If it’s from someone I know, I’ll say, “Thank you for the suggestion” and change the subject. I have neither the energy nor desire to debate it with them.
And I’ve made a concerted effort over the past few years to change how I interact with others. I’d like to say that I’ve never in my life given unsolicited medical advice to anyone, but I’d be lying. Like many other people, I’ve had the urge to fix and to cure. I’m almost 100 percent sure that at some point I’ve frustrated others with unsolicited medical opinions, the same way I’ve been frustrated. Sometimes what goes around comes around, as they say.
While I am not religious in any way, the Golden Rule — treat others as you would want to be treated — rings true for me. This means that I have stopped giving unsolicited medical advice and suggestions and have made a decision to be more mindful about what I do say.
If someone’s actually asked for advice, I’ll give factual information and resources to the best of my ability. If not, if someone’s discussing a medical issue or medication I know about, I’ll mention that and let them know that I’m there if they need to vent, ask questions or compare notes. Sometimes people respond to those cues and want to talk; sometimes they don’t. If I am asked, I never tell people what they should do; I simply tell them what I did and how it turned out. After all, the fact that we have the same illness doesn’t mean we will have the same experiences.
As Mad-Eye Moody would say, this requires constant vigilance. Every now and then I find myself on the verge of offering treatment advice to a friend when none has been requested. And I catch myself, backspace until the comment box is just a blank white square, or take a deep breath and think of something else to say. Support them. Have empathy. Don’t try to fix them.
I’ve picked up some great responses from what my friends have said to me:
“Hell, that really sucks.”
”That must be really rough.”
”Here’s an anecdote…”
“If you need (specific help) please let me know.”
”I’m here if you need to talk.”
”Oh, for f*ck’s sake.”
“I had that. If you have any questions about it or want to compare notes, I’m always available to chat.”
”Sending you strength today.”
“I love you.”
My chronic illnesses have taken so much from me. However, in this respect, they’ve given me more awareness and have made me a better person and friend.