If you’re reading this you probably have a friend with a chronic illness. You probably also know how to use the internet and sometimes find yourself searching for things to help your friend through said illness. That’s probably how you found this link. First of all, on behalf of people with chronic illnesses that aren’t douchebags, I want to thank you for your help. We know it isn’t easy to be friends with us sometimes. Having a chronic illness is exhausting for more than just the person who is sick. It’s tiring for the friends and family too. When you care about someone it sucks really bad to see them go through something shitty like a disease with no cure. You are invested in their life so you hate to see them sick and frustrated. Thanks for caring and for trying to help. Really. It means a lot to us. But there’s something else I have to tell you. We love you, but you have to stop sending us links to articles online about how we can be cured holistically. We love you, but you have to stop sending us the random online treatment that your coworker’s cousin’s best friend’s college roommate who also has a disease swears by. We don’t really blame you. We know you are trying to help. We blame the internet. I will now illustrate what it is like to have people constantly tell you, someone with a chronic illness, how to manage your own disease. Hopefully this will clarify some things for you.

There is one thing that is really hard to come to terms with when you develop a chronic illness – something that is as much incurable and debilitating as the disease that rages inside of you – the constant medical advice from friends and acquaintances who Google cures for your disease. Sure, the fact that you, my friend, are Googling my illness is endearing in a way, I guess, because it means that you want to know what is wrong with me and you want to know so bad that you are willing to power up your Macbook. It’s nice when someone is sick and the people around them put a little effort into understanding the mechanics behind that sickness. But, chances are, for those of us with illnesses, we prefer for you, the friend, to gather some basic understanding and then give it a rest.

Sure, I appreciate it when you want to better understand why I might limp some days but go out jogging on other days. I get that my disease is complicated. But when you start reading every Web MD article that has ever been archived on lupus, or start going to holistic health websites to find simple everyday cures that no one has ever thought of using before, I will smile politely and thank you for caring, and then I will roll my eyes when you aren’t looking and probably message one of my sick friends about how tiring this is. I just don’t care about your top ten health hacks but I’m too polite to tell you that to your face!

If you’re reading this and you feel confused because you think Googling cures for a friends’ illness is a heroic, thoughtful thing to do, then I will try a little harder to explain it to you. See, chances are when your friend is told they have an illness that drastically affects their lifestyle and they are going to have to live with it for the rest of their lives, they tend to do a lot to understand that illness and how to manage it. Chances are your friend even sees a doctor on a regular basis, and maybe some other health care providers too. Maybe your friend has five doctors that specialize in five different things, as well as a massage therapist, acupuncturist, physical therapist, voodoo witch doctor, and a very old Chinese woman who has a cupboard full of herbs. And chances are that all of these health professionals are doing the best they can to work with your friend to make sure the disease makes as little impact on their life as possible. I have lupus, and despite all of this bogus internet spam telling me that all I need is a little vitamin D3, I think I’d rather listen to my team of medical specialists. Your friend probably feels the same way.

As that person with a chronic illness, I can tell you first hand that I want to shin-kick the person who tells me that maybe the gluten in my diet is causing my joint problems, even though I don’t have a gluten intolerance, or that maybe if I just always make sure my chair and bed are facing east I won’t have severe migraines any longer. Luckily most of my friends are cool enough to not send me a hundred articles by vegan mommy bloggers that tell me stupid things like wearing my hair in a pony tail is giving me vertigo. I hope you can be that cool too. Even though my friends understand how annoyed I get by this type of medical advice, I am not completely shielded by it. As a blogger, you better believe that I get hounded by comments and e-mails that promise me I am not sick, and that all I need to do is buy this book for 9.95 USD that holds all of the secrets to immortality. And I delete every one of them. Because no one’s illness should be undermined. No one should be told that the disease they battle everyday with doctors appointments, pills, maybe even chemotherapy or operations isn’t real or it can be fixed by eating kale cooked at exactly 236.24 degrees celcius for no more than 12 minutes and no less than 11 minutes and 59.3 seconds.

So yes, if you come across something that might legitimately help your friend out or that you are curious about and just want your friend’s opinion on, you have permission to copy and paste that shit into a Facebook message. You’re allowed to discuss your friend’s illness with them if you do it the right way, if you ask questions and show a little empathy. Maybe your friend’s illness fascinates you because the body is just a fascinating thing. You can talk about that with your friend. It’s just not okay to discuss it if you get all preachy and health guru on them. It can be a balancing act, depending on the illness, your friend’s personality, and how absolutely idiotic the information you provide is.

To help make this process easier for you, I will provide examples of how you using the internet can be beneficial for your sick friend, and examples of how it can be a waste of time for your sick friend.

This is okay:

-If you have a friend who cannot eat gluten due to the autoimmune disease Celiac, it’s totally cool for you to send that friend some cool gluten free recipes you found online. How thoughtful of you!
-My friend Jill found this advice column about someone who is offended when their friend doesn’t care about all the research they’ve done on their disease. See, I have cool friends who know how to send me the right things about chronic illness.
-Feel free to send us links to breaking news about new drugs or clinical trials. That is an example of the internet actually being useful. We will be proud of you for sorting through all of the shit and finding something helpful for us.
-Send us funny things like a clip from Tig Notaro’s stand-up titled “Hello, I have cancer.” We like to laugh about being sick sometimes (okay for me it’s all the time).
-Use the internet to find awesome cards like these by cancer survivor Emily McDowell.

This is not okay:

-Let’s say your friend has Multiple Sclerosis and you read an article on stupidmadeupholisticcuresforseriousdiseases.com written by some Beverly Hills “Natural Health Expert to The Stars” that promises you that some gluten has a chemical in it that actually destroys the myelin in the nervous system and by cutting out “bad gluten” and keeping “good gluten” in their diet your friend will be able to walk again. Don’t send that to your friend. What are you even thinking?
-Just don’t ever send us a link to a juice cleanse and tell us it will cure our lupus/MS/cancer/arthritis. No.
-Anything from DrOz.com.
-Don’t even think about sending me those images of inspirational quotes with a charity ribbon in the background that you see all over Pinterest. Okay that one probably isn’t universal. A lot of people probably like those.

We know you just want to help us, but we probably already read everything remotely related to our illness that has been published online. And if I believed everything I read on the internet about what was wrong with me and how walking backwards for 6 days could cure it (the internet seriously has some crazy shit on it), I probably wouldn’t have stuck it out with my doctors and they probably wouldn’t have found the mass in my head that caused almost all of my problems or received my lupus diagnosis. As much as I lose trust in doctors and health corporations at times, I still have more trust in them than some random blog comment written in barely recognizable English even though it’s supposed to be an excerpt from CNN.com. And you should have trust in the process too. Trust that your friend knows the important things they need to know about their own illness. And stop telling us that we just need to stay active. Shut up. We know that.

 

6 Comments on How to use the internet when your friend has a chronic illness

  1. Caroline
    May 29, 2015 at 7:30 pm (4 years ago)

    I have a friend who insists on telling me that what was done to treat her mother’s breast cancer 20 years ago is what I should have had for mine. She just doesn’t get it when I don’t call my doctor and ask for that treatment.
    And my father insists on researching his medical ailments exclusively on Wikipedia.
    And somemadeupshitaboutallmyailments.com doesn’t exist because no one else has my assortment of ailments in the world.
    Thank you for expressing my frustration so well.

    Reply
  2. Helleanor Rigby
    May 30, 2015 at 7:21 pm (4 years ago)

    I developed a gnarly thyroid tumor and went through some nasty treatments, which, unfortunately, resulted in a 100+ pounds weight gain. My favorite thing in the world to hear was, “Did you talk to you doctor about diet and exercise?” Gee golly whiz. Why, no, I didn’t. I have maintained a healthy, active lifestyle for 27 years, but wow, just now, I totally forgot how that works. My mom *literally* called on my birthday and said that for my present, she’d pay to send me to one of the Biggest Loser resorts. *facepalm
    I know they mean well, but, just, really?! DO YOU HEAR THE WORDS COMING OUT OF YOUR MOUTH?!?

    Reply
    • Susan
      July 26, 2016 at 4:21 pm (3 years ago)

      Lol you ARE the biggest loser That is unbelievable. We should write a book
      I opted to have a total thyroidectomy. I had just had brain surgery 6 months before they found the mass and my body was too weak to handle the radiation. Did the radiation work or did you end up having it removed I. The end.

      Reply
  3. Julie
    June 9, 2015 at 7:38 pm (4 years ago)

    I’m so glad to be past this part of my illness. I think I’m too old to make new friends and all the old ones (and family) have already past this point. But, I wish I’d had this post to share with them back in the day.

    Reply
  4. KatNeedsABreak
    June 10, 2015 at 11:42 pm (4 years ago)

    I worked as a model when I was younger, and was prideful about my figure. After I’d been on prednisone for 10 YEARS and put on a weight as a result, my sister sent me a subscription to Weight Watcher’s magazine for Christmas. How thoughtful! Exactly what I wanted – a reminder that my illness had significantly impacted my appearance.

    Reply
  5. Livingalunglife
    December 17, 2016 at 3:24 pm (2 years ago)

    Hi – I’m not sure I have the “right” you on Twitter ? I did try the share this with all the spoonies I know. I have wanted to say this so often, well I’m sure you know. Can I share this blog on mine please ? http://www.livingalunglife.com ? Of course you will receive full credit. Either way, thank you (:

    Reply

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