How to deal with unsolicited health advice for chronic illnesses!
It’s one thing, isn’t it, when you actually want advice and get an ‘ah-ha!’ moment about your chronic illness or neurodiverse condition yourself?! But what can you do when friends, family or even strangers are telling you what to do almost all the time? And why are they doing that?
All of the examples are from my own experiences and experiences that friends have shared with me and have consented to me to sharing with you. They may be all too familiar for you. But my/their responses to these remarks or what I wish I had done at the time is very personal to me. So it may not work for you, but the idea of this post is to get you to think a bit more about what you would want to say.
1) They fear your health will get worse
This I have pondered for a few years. Sometimes, they genuinely want to help and are concerned about you, and they think if they may just be able to help, then you will be how you used to be or how they want you to be — better, not worse than you are now. For example, one winter, I could no longer walk more than a few steps without getting fatigued and so I bought a wheelchair for friends to push and help me get out of the house more. I thought this was massive progress, but one person I know suggested that this would worsen my health and was convinced I shouldn’t do this. Instead, he would rather me push through the fatigue to continue walking. It turned out this was due to their fear I would lose muscle conditioning (which has actually been proven not to be the case for CFS patients!). This person’s fears dictated their behaviour.
Instead of making this comment, it would have been helpful for him to admit he did not know anything about Chronic Fatigue and actually ask me why a wheelchair was helping me improve my life. But admitting you don’t know something is hard for some people and sometimes their mind is only focused on their own fears. Not nice, but useful to know.
I sent this person a peer-reviewed study proving their fears were unfounded and said that I was recommended a wheelchair by my healthcare professional. You can say something like: “I know you offer ideas because you care, but my healthcare provider has said [… insert counterargument] and I trust the professionals i work with who are some of the best in their field. Please can you stop offering suggestions.” You shouldn’t have to do this, though, I know, and I get that all of this is exhausting both emotionally and physically.
2) They don’t want to accept illness can happen at any time to anyone — including themselves!
Healthy people may believe in the illusion that they have complete control over their health and that you have full control over yours. In many cases, where this core belief leads to ableism, they then draw the conclusion that you are only sick because you are either not trying hard enough or not trying the right things. They assume that if they got ill, they would be able to do something to recover, as should you. But this is a myth.
So, by telling you to cut out a particular food or to try yoga, they are attempting to do more and take control over something that they (and maybe even you) have very little control over, possibly so that they don’t have to accept it could happen to anyone, including them. And that if it did, they wouldn't be able to do something about it.
You can assure them that you are doing everything you can, you have adaptions, and that you don’t wish to talk about it anymore. If they do it again, remind them politely and the third time, you may wish to give them a warning and say you have told them several times now, and they are actually making your health worse because they aren’t respecting your boundaries. Then you may have to put additional boundaries in place, like distancing yourself from them for a while.
3) It brings up uncomfortable emotions for them that they haven’t learnt how to process
Sometimes it is because witnessing your suffering or struggles is causing them pain or sadness - your health issue is uncomfortable to them. But this is not your fault, even if you are the one who ends up having to deal with and manage their emotions with them, and it is exhausting!
Having good boundaries, self-care and coming up with phrases that you can use in advance, such as: “I know my illness might be upsetting for you, but, unfortunately, I don’t have the energy to help you process your emotions around my illness. But there are professionals who can help.” Sometimes you may have to repeat this phrase a few times or even stop seeing or interacting with that person for a while to protect your own energy and emotional health. Although putting these kinds of boundaries up is hard, it is good emotional self-care.
4) We live in a productivity-driven society that measures self-worth by activity
That moment when you first meet someone, they will ask your name and then the question “what do you do?”, meaning “how are you a productive human being?”. This question can be hard for those who don’t or can’t work and I do not ask this question anymore. I ask “what are you passionate about?” because everyone has something they can geek out about!
Unfortunately, a lot of people in society think that our self-worth comes from our ability to be useful or productive and so we are socialised to provide solutions, rather than just listen. By posing solutions, this approach allows them to avoid the need for empathy or presence to find out what you actually need from them. It can be helpful to just tell them that you don’t need solutions. Something like: “My medical professionals are helping me with their expert knowledge about my condition. Thank you for thinking of me, but if I need your suggestions in future I will ask. I’d appreciate it if you wouldn’t offer me solutions, and just listened. Thank you.”
5) Society views disability as an inconvenience
When we think about the world, it isn’t great for wheelchair users or disabled folks. Yes, it is getting better. But no one gives you a manual on how to cope with navigating the world with a new chronic illness, such as chronic fatigue. Not only do we have to adjust the way we move through the world, but those who know you (particularly if they have limited experience of disability or chronic illnesses) also have to learn about your new limits and challenges.
I remember one time, visiting Arles, France, in my wheelchair, and a friend who I was staying with who was already very open-minded, educated and supportive around disability, said she just couldn’t believe how impossible it was to get around. There were so few ramps, doors that weren’t wide enough, people parking across drop curbs, etc. She felt my frustration. I was lucky that she said she would write a letter of complaint to the mayor because, honestly, I did not have the energy to do that! But other experiences of being out in the world haven’t always been this positive.
Sometimes I have had the “but you did that last week” (so why can’t you do it now?) or “why don’t you just get on with it” (and deal with the impact on your body later when I am not there?). These aren’t so much unsolicited advice but more a general misunderstanding of health - that it is stable and every day is the same, which simply isn’t the case, or that you can recover in a couple of days (like most healthy folks do with a cold)!
Often it is a lack of education, societal acceptance and the desire to be helpful (due to productivity culture) but it can come across very much ego-driven and give the impression that you are somehow an inconvenience to them and must get better.
If you are a Highly Sensitive Person (HSP) or you experience Rejection Sensitivity Dysphoria (RSD) - which is especially applicable to neurodivergents who have ADHD, autistic and/or SPD traits - then all of this can be particularly hard to experience. Try to have a few people who can help remind you how awesome you are. You may wish to write down 10 reasons why you love your life and hang it somewhere to remind you on your tougher days.
What would work best for you and your chronic illness?
When in conversation with a stranger, excusing yourself from the conversation can work, but a more direct approach is usually needed with colleagues, friends and family, like in the examples above. Let me know of any additional tips or tricks you have learnt and used.
