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Unsolicited comments/advice about your illness: How do you handle them?
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LifeDelineator
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LifeDelineator
Last activity on 21/11/2024 at 11:28
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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.
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Somya.P
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Somya.P
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Last activity on 22/11/2024 at 21:22
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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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Somya
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nikki77
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nikki77
Last activity on 20/11/2024 at 15:25
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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
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LifeDelineator
Last activity on 21/11/2024 at 11:28
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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
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nikki77
Last activity on 20/11/2024 at 15:25
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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
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LifeDelineator
Last activity on 21/11/2024 at 11:28
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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
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nikki77
Last activity on 20/11/2024 at 15:25
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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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lesmal
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Last activity on 22/11/2024 at 17:10
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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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Les
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LifeDelineator
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LifeDelineator
Last activity on 21/11/2024 at 11:28
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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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Somya.P
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Somya.P
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Last activity on 22/11/2024 at 21:22
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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.
@Alisonn @Thumbo @Annieo @GensD67 @margaretbmarquez @Snuggles @Bentleyboy @alantrain @Gangel29 @Terzeryex @Sueyfooey @Granddad @Emmarowlwy1979 @martynphipps21 @Tomed52 @lululips @Susies @Benidorm2 @Harry7 @Sandrakilburn @LarbreckLady @Weemaw @Sundial @Jahunt1975 @eliosaurus @emilynpirola.uk @Amanda @Tgreenp @JenGoli @MazzieB @katie19661 @DevonRoy @EHill0853 @mcantliffe @KLC1955 @Christopher @IanCoveney @Billycruise @Grankids7 @Janharper-whale @Linda5 @Nuttynidz88 @Almogia @Denaced @Bluemarble @Yvonne @Frenchy @Pickleberry @Ausie65 @Neil6128 @daimog @JanReeves @EMCEE74 @Bex1869 @Jackiehogan @Sheray @Gledie78 @Shakirabarratt @BellaB @Dawnshuskys
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 🌼