How to offer advice to someone with a chronic illness

 

Photo credit: Charlie Foster
Photo credit: Charlie Foster

If you suffer from a chronic illness– especially if it is an invisible illness such as ME/CFS or fibromyalgia– you will no doubt find that some people will offer you advice on how you can improve your situation. The majority of the time this advice comes from people who mean well. After all, the people who care about us don’t want to see us suffer; they want to help in any way they can.

What I’ve come to realise though, is that there are two different ways that people can tell us about the information they have Googled, read about or heard from their second cousin twice removed. The first I appreciate, the second… well, not-so-much. Today’s post is all about how to offer advice to someone with a chronic illness.

The first way you can impart your new-found knowledge

So let’s talk about the first way people can give advice or tell someone about something they have discovered and think might be helpful. Spoiler alert, it’s the good way but sadly rarely happens. It’s when someone reads an article or comes across research that they think is interesting. They haven’t heard of it before, so they do some extra research to first see if it is legitimate and if it is recent (there’s a lot of outdated stuff that gets shared around social media). Next, they search blogs, journals and social media to see if anyone has benefited from it.

After they have spent this time researching they then say to you, “Hey, I read about this really interesting thing. Here’s the link, I thought you might want to read it.”

I personally always appreciate this (so long as they have put the effort in to research properly) as it shows that they are interested in finding out more about my chronic illness. The majority of the time I’ve probably already read it or heard about it (after all I’m a total geek who likes to keep up with these things) but I am always thankful that they care enough to learn more about my illness and that they want to help me. They aren’t telling me what to do, just sharing some advice or information that they thoroughly researched and found interesting.

All I ask is that you please use some common sense when choosing what to share. Don’t send that link about a “miracle cure” from some dodgy, unreliable website that ends in .info or .co. I’m an intelligent person and if what they claim was that easy there’s no way I would still be sick.

Also, don’t hit share on some headline you see on social media (especially if you haven’t even read it). Reading one article is not enough. Look for the actual research behind any article and dig deeper before sharing. Finally, don’t share article, after article, after article. It get’s frustrating. The odd thing now and again is okay but overkill is not.

Oh, and I think it goes without saying but I’ll say it anyway. Make sure you are in a position where it’s acceptable to offer advice. By that, I mean you are close to the person and have that kind of relationship with them. The kind where you both support and help each other through life’s problems. Don’t be offering advice randomly to people you don’t know or aren’t close to. That’s just plain weird because if you aren’t close to someone you can’t fully understand their situation. Moving on…

The second way… hint: don’t be this person

The second way people can impart their wisdom is actually really draining, frustrating and just downright annoying. It’s the people who seem to become overnight experts in the field of *insert your particular illness*. You know the ones.

The people who tell you that x, y or z will make you right as rain. The ones who we just roll our eyes at and think, “Here we go again.” They tend to overstep the mark and tell you what they think you should be doing. The key words in that previous sentence being “what they think”. Here are just a few things that this type of person tends to say:

  1. “It’s just about having a positive mindset.”
  2. “I think you need to exercise more.”
  3. “You need to change your diet…”
  4. “You should try…”
  5. “My second cousin twice removed has *insert illness* and they do *whatever*, you should try it.”

You catch my drift. Their language tends to be all about “just”, “should” and “need to”. Even though they probably still mean well, their way of communicating is poor. Feel free to let me know about any other remarks you have heard in the comments section below.

Why is the second way a problem?

The problem with the second way is that there is no two-way communication for a start. The person isn’t engaging with us and asking us if we know about something. Instead, they are telling us what we should be doing with no sound knowledge or reasoning other than it’s what they believe to be right (which is ignorant).

It also generally shows a lack of understanding (not to mention compassion) about what it is like to live with chronic illness. Furthermore, when you give us advice in this manner it’s putting down our struggle; you make it sound like our lives would be so much better if we simply changed something or put in a little more effort.

This comes across like you are implying we are choosing to be sick. It’s downright patronising if I’m totally honest and it causes us stress. Stress exacerbates symptoms and it is something that needs to be avoided. It will also strain our relationship with you.

At the end of the day, none of us want to feel the way we do. All of us want nothing more than to be healthy. It’s worth remembering that things aren’t black and white with chronic illness and everyone is different.

And you can bet your bottom dollar we’re already doing all we can to improve our situation. We become expert patients the minute we have a diagnosis because if we want to live as well as possible with our chronic illness we have to be. And yes, we’ve probably already tried that weird thing your auntie told you about because, honestly, we pretty much try everything.

Please think before you next tell us your advice

If you have some advice that you think will be helpful or you have found a great research article do please tell us about it (if it’s appropriate to do so). However, all we ask is that you do so with kindness, compassion and without implying that we need to or should be doing something (even if you think it).

Remember it’s your opinion on a situation that you probably know little about and it’s not helpful to speak to us in that manner. There is definitely a right and wrong way to offer advice to someone with a chronic illness. Please choose wisely.

As always, let me know your thoughts in the comments section down below.

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Donna Grant

Hello, I'm Donna. I'm a Scottish artist who lives with chronic illness. My blog began in 2013 as a means for me to share and connect with others living with chronic illness. On my blog, I have shared my journey back to better health and the diagnoses I faced along the way. I now work as an artist and sell my products in my online shop. I continue to write about chronic illness on my blog and also share helpful posts about art, business and bullet journalling.

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12 Comments

  1. Advice can definitely be welcome or unwelcome depending on the tone. I do hate when people “politely” send links to things like “woman cured of EDS with this one weird trick” and ask what I think though. Short of rearranging my genes, there’s no cure for EDS, and I’ve probably been sent that article 7 or 8 times already lol! My favorite way to get advice from people is when they’re like “hey, this is what I do for (symptom), and it helps, do you think it would be a good fit for you?” That way it seems caring and not patronizing.

    1. Ah good point! Yes those are annoying and I was thinking about that kind of thing as being part of the second way I shared. However, I’ve gone back and added a little bit in about that in the first part too, just to make sure it’s clear that kind of thing isn’t welcome. Thanks!

  2. This is great. I don’t mind people thoughtfully sending me articles they’ve read having to do with my illness because I know they are just trying to be nice. What I can’t stand is people sending me articles selling a product, or worse “advising me” I need to buy their product to fix my illness. Ugh no.

    1. Thank you! Yes, that’s exactly it. For the most part people are only trying to be nice or helpful because they care about us and want to see us better. I don’t have a problem with that either. But yes I agree, telling us what to do or that we won’t be well unless we try x, y or z… well that’s not on.

  3. I think a good point to add would be that not only we most likely have already tried miracle cures, but people also need to be conscious that we all have a) different levels of pain and different symptoms, b) different reactions to medication, diet changes, lifestyle changes, etc. and c) overlapping conditions that prevent us from trying some of the recommended treatments for our illnesses. What fibromyalgia is on paper and what it is in real life is really different, especially once you factor in all the different comorbidities people tend to develop over the years.

    1. Thank you for sharing, I really appreciate it 🙂 I will check out your blog post, thanks. You make a very valid point- we absolutely have to be careful who’s advice we take, especially as there is a lot of misinformation out there that has the potential for harm.

  4. A friend sent me a link to an article regarding fibromyalgia and the “one” doctor who knows how to cure it. Apparently it relates to a black mold cause.I did read it then told her that if he could cure it then he would be over run with patients. She got angry and said if it was her she would do whatever it took to get better. I did talk to my doctor, a rheumotologist, and he said he had never heard of such a thing and no simple blood test as the article stated could reveal that. I have finally learned just not to mention my illness. Everyone has an opinion and or cure for you. I guess they don’t realize we as sufferers do research on our own hoping for answers.

    1. I think what people struggle to get their head around is just because someone has found an underlying reason for their symptoms, it doesn’t mean it is applicable to everyone. The difficulty I guess is that so many illnesses share similar symptoms and if you look up black mold, the symptoms are pretty much the same as fibro. So yes, there will be people out there diagnosed with fibro who actually have something else, be it black mold or Lyme etc. But there are others who don’t. Again it goes back to one size doesn’t fit all. We are not all the same. It is ignorant to think that and it’s really sad that your friend commented in the way they did 🙁 I’m sure like the majority of us you are doing what you can and that is more than enough. People don’t get it until they get it.

  5. A lot of people offer advice without even any knowledge of Fibromyalgia and constantly compare it with my sister having neurofibrosis1. Who can at least have some form of relief from chronic pain, whereas, with myself in pain 24/7 has a carer, someone who does all her housework, washing, etc take her to dr’s appts shopping, I don’t have that privilege, I do everything on my own by myself. Also been accused of faking my pain for attention which I have never done, but whereas my sister plays on it to the point, she gets people buying her things and getting money, which I’ve said that it isn’t nice taking advantage using your family like that, she’s still doing it. Quite upsetting! Even more upsetting I’ve lived where I have nearly 24yrs, my sister moved around the corner 4-5yrs ago, they all visit her etc. One good thing recently my housing manager, who knows all my difficulties I’ve been having, also lack of help with family, my health has deteriorated over the years she’s someone in to help me out, hopefully, be able to make some of my appts that i’ve either forgotten or unable to make because of chronic pain, migraines, etc. I know there are others out there that aren’t managing or not having support just like me. I’m highly independent so I get on with my life, without them, as I’ve never asked them for help (except once or twice but refused, never asked again) which is something my family doesn’t like! Better of not being around those who constantly put you down. I refuse to lower myself to the way others want me to be or play their stupid games, or be apart of them. I don’t have a low esteem and have great repect for myself and proud of what I am capable, can achieve by myself on my own, in my own time.

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