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

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Somya.P

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09/18/2024 at 12:00 AM

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Somya.P

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Last activity on 11/13/2024 at 7:38 PM

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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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Breathmaster

09/29/2024 at 6:07 AM

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Breathmaster

Last activity on 11/10/2024 at 4:01 AM

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Patient, COPD since 2024
Other conditions: Asthma, Respiratory allergies + 1 other condition

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I hide my symptoms from others. I go out less often. I tend to go out only when I believe that I can make it. I tell myself “ Mind Over Matter” to help me hold it together.

I don’t respond to negative remarks. If I can’t escape the situation then I listen but make no comments. I just say stuff like: huh; uh huh, yep, yeah, yes but I make it obvious that I have heard it all before. I have asked some if they remember their first thoughts of life. I always wait and listen so others can speak first. I tell them the beginning of mine and that always makes people respond quite awkwardly to my story. Yes my beginning is something that lives with me daily. They are my DayMares!

I hope my answers and responses are understood. We have all had bad stuff, but it will not define us. The hardships that I have endured has made me a much more knowledgeable person.

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Mark S

Unsolicited comments/advice about your illness: How do you handle them? https://www.carenity.us/forum/other-discussions/good-to-know/unsolicited-commentsadvice-about-your-illness-how-do-you-handle-them-5846 2024-09-29 06:07:41

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Somya.P

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11/08/2024 at 4:22 AM

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Somya.P

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Last activity on 11/13/2024 at 7:38 PM

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371 comments posted | 143 in the Good to know group

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Hello @Breathmaster,

Thank you for opening up about your experience, it shows that you've gained a lot of resilience through your experiences. Is there anything in particular that’s helped you keep this outlook, even on the hardest days? Your insight could really encourage others here.

Take care,

Somya from the Carenity Team 🌼

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Ms.Vee

09/29/2024 at 5:48 PM

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Ms.Vee

Last activity on 10/07/2024 at 12:15 AM

Joined in 2019

19 comments posted | 1 in the Good to know group

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Whenever someone takes it upon themselves to give advice or asks about my illness. I have one word for him or her! Simply, WHY? End of discussion!

Simply,

Ms. Vee

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Somya.P

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11/08/2024 at 4:21 AM

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Somya.P

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Last activity on 11/13/2024 at 7:38 PM

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371 comments posted | 143 in the Good to know group

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Hello @Ms.Vee,

Thank you for sharing, it's such a simple yet powerful way to draw boundaries and take control of those conversations. Have you found any other ways to handle these types of situations?

Take care,
Somya from the Carenity Team 🌼

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DonMLeBlanc

09/29/2024 at 10:57 PM

DonMLeBlanc

Last activity on 10/15/2024 at 3:19 PM

Joined in 2024

Patient, Parkinson's disease since 2024
Other condition: COPD

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I have COPD as well as Parkinson's disease. Both have breathing difficulties. Some people tell me, Oh, just get over it, or, You don't look sick, or, You are just making it to be worse than what it is. They don't care about how I feel. Sometimes, I wish I could just withdraw from the human race.

DonMLeBlanc

09/29/2024 at 10:57 PM

DonMLeBlanc

Last activity on 10/15/2024 at 3:19 PM

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Patient, Parkinson's disease since 2024
Other condition: COPD

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Somya.P

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11/08/2024 at 4:19 AM

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Somya.P

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Last activity on 11/13/2024 at 7:38 PM

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371 comments posted | 143 in the Good to know group

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Hello @DonMLeBlanc,

Thank you for sharing this, it’s heartbreaking to hear the way others’ dismissive comments make you feel. Managing both COPD and Parkinson’s is already an extremely difficult challenge, and having to cope with insensitive remarks on top of that must be exhausting. It’s natural to feel like withdrawing, but please know that there’s a community here that truly gets it. Have you found any sources of support that help, or people in your life who do understand?

Take care and we’re here to listen whenever you need to share more,

Somya from the Carenity Team 🌼

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

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