Unsolicited comments/advice about your illness: How do you handle them?

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Somya.P

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18/09/2024 at 00:00

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Somya.P

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Hello everyone!

How are you all today? 😊

As patients, it’s common to receive unsolicited advice or remarks from people who may mean well but don’t truly understand what it’s like to live with a chronic illness. Whether it’s overly simplistic suggestions, rushed judgments, or awkward comparisons, these comments can sometimes be frustrating or even hurtful.

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How do you manage these situations in your day-to-day life? Are there certain remarks that irritate you the most? How do you respond to people who minimize your symptoms or misunderstand your experience?

Share your stories and tips on handling these difficult interactions. Together, we can learn how to better navigate these moments and support each other through them! 💬

Take care and looking forward to hearing your thoughts,

Best,
Somya from the Carenity team 🌼

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LifeDelineator

22/09/2024 at 16:50

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LifeDelineator

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Even worse is the lack of consideration many , with and without impairments, endure. While consideration requires some level of motivation; too often, unrequested advice is prompted by subconcious motives.

That is why, more often than not, these acts are more blunder than they are a blessing. Much of this is because social media has completely ruined the meaning of the word "friend".

We need to learn how to differentiate between acquaintances and friends. True friends are very, very rare.

Unsolicited comments/advice about your illness: How do you handle them? https://www.carenity.co.uk/forum/other-discussions/good-to-know/unsolicited-commentsadvice-about-your-illness-how-do-you-handle-them-5386 2024-09-22 16:50:17

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Somya.P

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26/09/2024 at 10:17

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Somya.P

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@LifeDelineator Hi there! You’re right, it often comes from people meaning well but not fully understanding what it’s like to live with a chronic condition. It can feel dismissive even when it’s well-intended. Have you found any specific ways to set boundaries or explain your situation that work for you? Sometimes educating others can help, but it’s also okay to prioritize your well-being and avoid engaging if it's too draining.

Take care,
Somya from the Carenity team 🌼

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nikki77

23/09/2024 at 22:12

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nikki77

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Hi I have a bit of an issue, I have epilepsy I'm 52 years old and because I have epilepsy I have to take eplim croon which can make deformed babies so I have to take the pill but as I haven't had a regular period in over 7 months so I stopped taking the contraception pill and my doctor has called me to tell me that I need to go back on the pill ? I'm not of child bearing age anymore I don't understand why I have to keep taking them ? I also don't like the way the doctors said you must take them till your at least 57 old. Its got me a bit confused about it?

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nicola kennedy

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LifeDelineator

27/09/2024 at 09:45

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LifeDelineator

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@nikki77 - The one thing no doctor has ever done: Strike a balance between "practice" and practicality. How has the extra medication effected you financially?

nikki77

27/09/2024 at 14:51

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nikki77

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@LifeDelineator since my epilepsy has become unstable I've been put on ESA benefit so I don't have to pay for any prescriptions , but I know have more hospital appointments which has put a strain on money to get to my appointments but other than that it has been ok or as ok as I can make it.

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nicola kennedy

LifeDelineator

27/09/2024 at 16:24

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LifeDelineator

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@nikki77 - I can easily empathize with you. After Cigna made me a life-long loan, for having covid/pneumonia; and raising my premium 20%, I cancelled, to self-insure.

With all the competition from Uber and Lyft, does your local cab company offer any discounts for, systematically, scheduling in advance?

nikki77

27/09/2024 at 16:41

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nikki77

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@LifeDelineator no I have never heard of this discount scheme? I will enquire about this though thank you for sharing this with me I have never even thought about it?

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nicola kennedy

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lesmal

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12/10/2024 at 15:53

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lesmal

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So many don't understand the trials and tribulations of living with a chronic condition. I've had epilepsy for 51 years now and still today come across heartless and ignorant people. I've learnt to ignore their comments and hopefully now have a neurologist that understands me further.

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LifeDelineator

13/10/2024 at 15:00

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@lesmal - Even worse, are those who think they have an understanding of specific bimpairments. A co-worker once, adamantly, tried to convince us polio and cerebral palsy were the same; out of complete ignorance they effected completely different parts of the body and had totaly different symptoms.

Even after every other person, in the exchange, realized one was neuro-muscular and the other necrosis, he refused to modify his stance.

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mjteddy

05/08/2025 at 20:39

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mjteddy

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Ignore most of them, the most common comment is that asthma is only a wheezy chest and isn't serious , I tell them that there's around 2000 people a year die from asthma attacks in the uk every year so year it's just a wheezy chest.

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Littlebo

05/08/2025 at 23:11

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Littlebo

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Just dont justify with a response as until you walk a mile in our shoes most people would never understand , so its not worth the effort it takes to feel the frustration to constantly try and explain

YorkshireJayne

06/08/2025 at 08:11

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YorkshireJayne

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Over the years I've had all kinds of comments and advice from friends, their friends and complete strangers!

'Have you tried swimming?'

Me: "Yes, I have, it caused more pain because I hate it!"

'Do you work? Why don't you work? I work and I have disabilities/am in pain...!'

Me: "No I don't work...but I have, not that it's any of your business! Let me ask you this, what is the worst pain that you have ever felt? Childbirth? Okay, imagine that pain in your head, neck, and all down your spine right down into your ankles and toes, all day, every day, worse when you sit still, better when you're moving but increases while you are moving slowly...could you work and have that? No? Then now you know why I don't work!"

'Oh you have NHL? My mum had that, they'll just take your glands out and you'll be okay then!'

That one was the most ignorant remark anyone has ever made to me and I instantly struck her from my friends; ignorance is bliss so they say, but hers was just after I was diagnosed and I flew at her...it was on social media too, which didn't help!

"I'm glad your mum is "cured" of her NHL so-and-so, but this one is with me for life! Not everyone is the same, there are 90 odd different variations of this disease and right at the moment I'm still getting my head around the fact that I have it! It is a cancer, not just a casual health problem and I have enough on my plate without flippant remarks like yours!"

Then there are the thoughtless remarks like

'Well, you're lucky aren't you? I mean, you don't have to get up and go out to work every day do you?'

Oh! I'm lucky to be in pain 99.5% of the time am I? I'm lucky that my body has let me down big time and I feel absolutely knackered all of the time am I? I don't just sit on my arse all day long, I'm up at 5am-5.30am every morning, do what housework I can and walk a dog for a neighbour every day, come ran, come shine. I may be in pain, but I am allowed to have a life!

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Life is for living, do it, no matter what!

Unsolicited comments/advice about your illness: How do you handle them?

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