*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.
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28 thoughts on “What You Need To Know About Toxic Targeting And MS”
Omg everything you say is just so spot on ! I love reading your posts they make me laugh so much .. thank you ❤️
Thanks so much for reading!
Hi, I was wondering if anyone here got a “negative” MRI at some point in the beginning of having M.S. I have a Ton of M.S. symptoms but just got a negative MRI. So now I have to hear from people “yeah I didn’t think you had M.S.” or “maybe it’s just sciatica, or depressiom or this that or the other”. My symptoms did not go away just because I got a negative MRI. And in fact I almost blacked out at the mall last week after pushing myself to walk for 30 minutes. I’ve read that symptoms are worse a week after your period and that keeps happening to me. I can sometimes be bed ridden for a week or more. My left thigh has atrophied to the point where it’s about an inch smaller than the right so it’s definitely not pms, in my head, depression etc. ??
Did you have an MRI of your cervical spine? You may have lesions there. MS can be difficult to diagnose, but even if it’s not MS it doesn’t mean your symptoms aren’t real. Keep pushing until you get some answers and a doc who takes you seriously.
Dealing with infertility years ago was my first journey into this…Wow! Giving up red meat and drinking raspberry root tea and I’ll be preggos….thanks. Funny how medical science hasn’t told me that
I think culturally we are so hung up on trying to fix everything, and we lack the skills to just sit with someone’s pain.
This is so true. My husband is a “fixer”.
Yes, I also dealt with infertility and now MS. When unsolicited advice started, my first thought was “here we go again.!”
I’m facing a dilemma. I received a questionnaire from the Ministry of Transport which has to be filled in by my neurologist. It pertains to the suspension of my driver’s license. One question was about my medication. The neurologist knows I am not taking any because the side-effects will be toxic to my lifestyle. I am fine. Should I allow the neurologist to start ramming his choice of medication down my throat? Or should I flush the expensive medication down the toilet?
You have to do your research and decide for yourself. The treatment decisions we have to make are difficult and you are right to be thoughtful about yours. Whatever you decide, don’t flush your drugs. If you’re not going to take them, make sure to return them to the pharmacy.
My favourite is from those who are younger than me (I’m 53) and fit. The advice is to do 10000 steps a day. I can’t manage that many in a week!
If only it were that easy.
So very well said. I wish I could convey my thoughts and feelings as well as you do. Brava for being our advocate !! ?
Thanks Kelly. I bet you can convey your thoughts and feelings better than you think. My advice is to keep a journal (the original blog). It helps me clarify my feelings, and regular diarists make good writers!
“there’s a feeling that if our will is strong enough we’ll avoid getting sicker”.
This feeling pokes it head up regularly enough to make me feel bad or guilty about my personal choices. What if I stopped eating inflammatory food and added more greens and seaweed to my diet. What if I did my Physio exercises more consistently. Push push push, guilt guilt guilt. Some days the bare minimum is what gets done and that’s that!
Your words are helpful in reminding us that we are all different and that’s totally ok!
Yup. It’s exhausting.
This article was spot on! I love how people “have a diet that will CURE your MS” Or they have a cousin who’s MS was cured by taking certain supplements. I have learned to smile, be nice and GET AWAY as soon as I can ! Thanks for addressing this issue ?
Well said. Looking back at my 21-year-old self when I was first diagnosed, I wish that I had the confidence and understanding to ignore non medical personnel advice. I would’ve saved myself a lot of disappointment and money. Unfortunately I was too young and very much a people pleaser to ignore them.
I really appreciate your perspective on this issue. I wasn’t even aware of toxic targeting as a concept.
I’ve been diagnosed with MS for about 30 years. My mom (a retired nurse) constantly tells me that she would never know that I had it if I hadn’t told her. I guess she just thinks I’m always drunk!! Whenever I mention a symptom I’m having, she flips the conversation to herself and how awful something is bothering her. I have to chew my tongue off. It’s “reverse” toxicity!
I’m sorry to hear this. It must be especially frustrating that it’s coming from your mom.
So I’m guilty of being one of those toxic people who loves and cares for Someone with MS. We don’t live near each other so I can help with groceries or even cleaning (which I would do). So what can I do when I hear how stressed and tired he is but wont rest? Or when he says he doesn’t want to be a burden to his family so he’ll push himself?
Great question. Sometimes it goes a long way to just listen to us vent. We know you can’t solve MS and sometimes we just need to get a few things off our chest. It can go a long way to hear: Wow, that sounds difficult. I’m sorry you have to go through this.
If your budget allows it, Spring for the odd cleaning service, or a gift certificate to something like Skip The Dishes.
Oh. My. Yes. All the words here. You sure have a way of making it all make sense. Thank you. ?
I have a thought Queenie, make a deal about my disability, loss and death and don’t ever let me forget it!
BTW, unmasked youth are struggling more than ever to “get the door” for me even tho I drove there in MY 1997 Toyota RAV4, thanks.
I haven’t eaten gluten in almost five years. The symptoms I have now are not from gluten.
I haven’t eaten grains in over two years. The symptoms I have now are not from grains.
I eliminated dairy. The symptoms I have now are not from dairy.
I took B12 sups and got acne.
I took Vitamin D sups and my liver enzymes more than tripled.
I decreased carbs/increased fat and my cholesterol went over 300.
I fasted 16-8 for more than two years and became underweight – even my breasts shrank.
I love to exercise and meditate, yet I still have symptoms.
And I still think it is my fault. At times I’m my own toxic target.
Most of my friends don’t know my diagnosis. If I didn’t tell you, you wouldn’t know. Can’t see my numb fingers or toes.
I’m sure I had a point with all the above, but am no longer sure. So I’ll just click post.
I hear you Elizabeth,
I was gluten free and dairy free for years prior to getting MS (because of an unrelated health issue and allergies that have me in and out of hospital (sometime ICU) multiple times a year).
When I got MS and joined the online groups I was shocked at the discussions online (I had no idea that ‘curing/controlling MS by avoiding gluten/dairy’ was a thing till then), and when I mentioned my experience (ie, that I got MS despite having not eaten dairy for over a decade and gluten a similarly) the kick back was huge. Apparently I hadn’t tried hard enough (which I don’t get – staying off a ventilator and not obstructing my bowel is pretty motivating), wasn’t strict enough, had cheated, or clearly fell off the wagon and that’s why I got MS.
Ive thought about it a bit and think people just want something to blame they can control (including ourselves), even if it’s hurtful, because the thought we can’t control our health and future is terrifying.
I do the same thing myself (with exercise, how much I sleep etc). I think it’s self protection x
Sooo spot on. I told someone just the other day – maybe not so graciously- when my brain and legs couldn’t navigate a rocky hillside that their Nike slogan of “just do it” wasn’t helping. Thank you so much for your encouragement and God bless!