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Unhelpful “Helpers”: Why Unsolicited Advice and Chronic Illness Don’t Mix

September 29th, 2015     by Denise Reich     Comments

Illustration: Bethany Walrond

When you’re chronically ill, three words become the bane of your existence:

“You should try…”

Any number of things could be tacked to the end of that sentence.

You should try… Acupuncture. A specific doctor. Supplements. Herbs. Vitamins. Therapy. A special diet. “Choosing” to not be ill anymore. Religion. A new clinic. This cool thing I read about online. This medication that my Aunt Edna’s son’s daughter-in-law’s cousin tried. A different dosage. Eastern Medicine. Western Medicine. Interpretive dance. Forgoing all medication.

If you have any sort of chronic or long-term illness or injury you’ve undoubtedly heard many of these, and countless others.

There’s nothing fundamentally wrong with any of those philosophies, treatments or beliefs; there is something wrong when they’re pushed at a chronically ill person in the form of unsolicited advice. When you’re sick, everyone from friends to colleagues to the clerks at the supermarket believes that it’s perfectly acceptable to tell you how you should be treating your condition. The minute you mention your health, or lack thereof, they’ve got a solution for you. They dole out “helpful” tips about your diet, exercise, sleeping habits, medication or the types of doctors you should see.

It’s puzzling as to why this is still a thing. It should be obvious: if someone hasn’t directly asked you for suggestions on how to deal with a personal matter, they’re neither wanted nor appreciated. And society will often follow this rule in other circumstances, but health seems to still be the Wild West. Many of the same people who would consider it rude to offer someone else unsolicited advice on money, politics or spirituality don’t seem to have any problem with telling a chronically ill individual what to do with their own body.

Dealing with this is daunting. These unhelpful “helpers” might be your friends. They might be people with whom you need to maintain civil relationships. You know that most of the time – but not always – they have altruistic intentions. Your mind might be screaming, “Shut up already! You’re pissing me off!” but you usually smile and do your best to deflect the suggestions without causing a stir.

Many ill individuals, including myself, do have a small circle of very close friends or family members that help them talk things through and make medical decisions. Many also participate in online or in-person communities where they compare notes with others with the same (or similar) conditions. Here’s the key: all of those folks have been specifically invited to share their thoughts or experiences. And interestingly enough, they generally don’t push their own opinions, either. Instead, they help their loved ones figure out what’s best for them or carry out their wishes.

If there’s a chronically ill person in your life, the best thing you can do for them is to refrain from giving them unsolicited advice. Here’s why.

1. I need support, not debates.

I want interactions with my family and friends to be positive for all of us. When I have to constantly field unsolicited medical advice and argue with you, that doesn’t happen. Our relationships become contentious and resentment brews on both sides. You end up getting annoyed because you feel I’m just not listening; I end up getting annoyed because you’re not respecting my agency and ability to make sound choices for myself. It doesn’t do anything good for either of us.

It has a chilling effect, too: When someone piles on the unwanted suggestions, I end up avoiding them. Is giving unsolicited medical advice worth losing a friend? If you are truly “trying to help,” does stressing out a sick person and causing them to become even more isolated really fulfill that goal? These are all things to consider.

2. No, it’s not “just worth a try.”

Oftentimes, unsolicited advice is accompanied by an encouraging “it’s worth a try” or “what do you have to lose?” Well, quite a lot, actually.

Chronic illness isn’t some kind of game where you just keep throwing completely random stuff at the wall until something sticks. Every consultation and treatment costs money, time and energy, all of which may be in short supply for a disabled or ill person. Everything has side effects. Chronically ill people often have several conditions simultaneously, all of which interact with treatments and the environment in different ways. They’re often taking lots of medications that have to be very carefully balanced. Even some over-the-counter drugs and herbal supplements can have extremely dangerous side effects or interactions when they’re combined with prescription meds. Some people with chronic illness compare it to a Jenga game or a house of cards: stability is fleeting and extremely fragile. Trying random things in desperation, just to see if they will work, can upset that precarious balance and make the situation worse very, very quickly.

You don’t know firsthand what’s going on. You’re not one of my healthcare providers. You’re not dealing with this 24/7 the way I am. You don’t know what I’ve already tried or all the minutiae of my current treatment protocol. You don’t know all about my finances or insurance situation. All of which are very good reasons you shouldn’t be trying to tell me what to do about my chronic illness.

3. Respect the “no” and move on.

It would be best not to offer unsolicited advice at all, but let’s say, hypothetically, that you’ve already done it. Your friend shrugs and tries to change the subject. What’s your next move? If someone tells you they’re not cool with whatever you’re suggesting it’s your cue to stop pushing it. Period. And no, your friend shouldn’t have to sit there and explain why they’re not interested. It should be enough to say “No thanks.” Respect the “no” and move on.

A former friend of mine once tried to aggressively push her cocktail of herbal supplements, which included some ingredients that were not necessarily compatible with my medications and allergies. I repeatedly told her that I couldn’t take just anything because I had a lot of drug and food sensitivities, that there were one or two ingredients of concern, and that I didn’t want to take supplements without being really sure of what they were or who manufactured them. She completely ignored me and insisted on giving me samples of her capsules. I threw them away as soon as I got home. I felt bad about that on one level; on another I knew that she’d refused to listen to me. I’d repeatedly told her I was not interested and I had no obligation to take a supplement that was potentially dangerous for me. Nor did I feel comfortable giving the samples to someone else, since they were questionable.

4. Yes, I understand you feel helpless. However, giving me advice I can’t use and don’t want will not make you less helpless in this situation.

I’ve often wished that I had a magic wand that could instantly solve my friends’ and relatives’ problems. I’m sure many people feel similarly. We don’t like to see our loved ones suffer, if we truly care about them. When a friend or family member seems to be locked in an endless battle with a Purple Monster, it’s very, very tempting to want to jump into the fray and say “Wait! Look! I have something here that will fix everything!”

Here’s the thing about that: You can’t fix it. Repeat after me: You. Cannot. Fix. It. You have zero control whatsoever over whatever is happening with your loved one’s illness or disability.

And that’s okay. Your friend isn’t expecting you to cure them. They know you can’t magically save the day any more than they can. You don’t need to try. You just need to hold space for them and be there. And yes, it sucks hearing a friend or family member talk about how ill they are all the time. After a while you just want them to stop being sick.

So do they. Don’t forget that.

As a chronically ill person I’d give my eyeteeth for my old life back. For even half the energy I used to have. For definitive reassurance that my heart is strong and healthy. For a calendar full of social engagements instead of doctors’ appointments and tests. For a robust bank account. For the ability to go out and do things without being incoherent and sleepy for days afterward.

I might not ever be able to get all of that back, but I’m working on making my life – as it currently is – the best that it can possibly be. You’re not seeing all the activity behind the curtain, so that might not be apparent to you, but it’s the truth. And in the meantime, it would be harmful for me to deny the reality I’m facing.

You have to trust that I’m doing the very best I can for myself. It’s that simple. That’s perhaps the scariest thing ever…but it’s what both of us need from you.

Tags: advice, body politics, disability


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