*A version of this post first appeared on Aby, the app for people living with MS.
Toxic targeting is the offering of unsolicited advice in an attempt to influence a person regarding their disease-management, and if you have MS, you already know how common it is to hear about how kale and wishful thinking will solve all your problems. Toxic targeting is the oversimplification of a serious medical problem by means of unwelcome, often aggressive, and/or uninformed advice. Toxic targeting is a micro-aggression because it’s usually the result of good or neutral intentions.
From the moment you’re diagnosed with a chronic illness like MS, you become the focus of an overwhelming amount of advice from friends, family, even strangers. People with MS are regularly counselled to be positive, to eliminate certain foods, to try a range of diets, drugs, and supplements, even to seek experimental procedures in foreign countries.
Regardless of intent, the phenomenal amount of advice that comes with an MS diagnosis can be considered toxic because of the negative impact it has on the people receiving it.
Repeatedly being told what to do and how to manage your body is annoying. It’s also dangerous. Most of all, it’s nobody else’s business. MS is a complex and difficult disease. When information is ripped from headlines or shared via third-hand anecdote, it’s often inaccurate. Even when data is reliable, it may not be relevant. Everyone’s MS is different.
When I get advice that suggests there’s a simple solution (give up gluten!), the implication is that I’m not doing everything I can to deal with my MS; that maybe MS is my fault. The implication is that my doctor’s not that smart, or that maybe MS isn’t that bad (we all get tired).
When we are, again and again, encouraged not to let this disease change us, and to just think positively, not only are we denied a bit of room to grieve and process our loss, there’s a feeling that if our will is strong enough we’ll avoid getting sicker. If we eventually do need mobility aids, we’re afraid we’ll be judged for having given up, for not having tried hard enough. We may even feel we’re letting others down.
When we’re asked if we’ve tried different diets, supplements, or medications, we’re, in effect, being asked to disclose personal details about our choices. Sometimes we feel we must defend what we and our doctors have decided to do. Expecting someone with a chronic illness like MS to prove just how sick they are is invalidating and emotionally exhausting.
Recognizing that most people just want to help, and accepting that you can’t control how others act, can sometimes be enough to let you smile politely and say, “Thanks for thinking of me. My doctor and I have a plan”.
It takes practice to handle toxic targeting with grace, in a way that lets you leave encounters without resentment. It’s okay to say, “Actually, I get this kind of advice all the time, and it’s really exhausting.” Thank them for their concern, and if the advice is coming from someone who truly wants to support you, consider letting them know exactly what that might look like. “Thanks for caring. What I really need help with is walking the dog, and picking up groceries.” And if you really want to shut them up, “Do you want to clean my bathroom?”.
Toxic targeting is common on social media, especially in drug and diet groups; where, unfortunately, people from within the MS community sometimes forget that just as everyone’s MS is different, so is everyone’s response to interventions—what worked for them may not (will not) work for everyone. Avoiding toxic targeting online means ignoring comments and staying away from content that isn’t helpful.
Illness is still an awkward subject for many. It’s no small task to communicate that this kind of advice is not only unhelpful but damaging. Accepting that there will always be people who say the wrong thing may keep you from pulling your hair out. Rest assured that attitudes are starting to shift. Social media has given the MS community a powerful voice, and on those days when you don’t feel like smiling and nodding, it can be empowering to share your experience on a broad platform that just may change a few minds.
Toxic targeting isn’t limited to the chronic illness experience, and most of us have likely been both the giver and receiver of unsolicited, unhelpful advice. When we know better, we do better; and hopefully, having the perspective of being on the receiving end of so much unwanted guidance means we’re less likely to inflict these micro-aggressions on others.