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How to Deal with Friends and Family When Living Chronically Ill (even when they don't understand) 

Aimee Esther
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Hey friends, today I wanted to share with you how i deal with friends and family who don't understand my chronic illness.
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POTS (Postural Orthostatic Tachycardia Syndrome)/ Dysautonomia: • LETS TALK ABOUT POTS! ...
Hashimotos: • ALL ABOUT HASHIMOTOS T...
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Leaky Gut Syndrome www.health.harvard.edu/blog/l...
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30 июн 2021

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Комментарии : 47   
@KennM12
@KennM12 3 года назад
it’s hurtful when the people you’re close to don’t put in the effort to learn or understand or accommodate.
@EC-yd9yv
@EC-yd9yv Год назад
I am going thru same 💔.... 🌹🙏✨
@maddy4843
@maddy4843 3 года назад
The hardest part of being a teen with chronic illness is people telling you that "it's probably just hormones" or "you are too young to have chronic pain." Or even "you'll grow out of it." Thanks so much for the video Aimee. It always helps. I can't explain how much your videos have helped me over this past year. You are such an inspiration.
@7CFlo
@7CFlo Год назад
I think people will always find convenient reasons for your health issue. I'm in my 40's and I still hear it all. People think everything is in your head. They think I struggle with weight because I'm not eating enough. They think they have all the answers
@missequestrian3448
@missequestrian3448 7 дней назад
Yes I sometimes feel you can’t say anything to people older than you because they’ll respond with “wait till you get old!”
@Tambryl
@Tambryl 2 дня назад
But once you are "old enough", you still get grumped at and treated like crap because now, it's because you're old, deal with it, everyone goes through it, etc., etc.
@missequestrian3448
@missequestrian3448 2 дня назад
@@Tambryl Yikes - any excuse to belittle someone else’s pain.
@Tambryl
@Tambryl 2 дня назад
​@missequestrian3448 which is awful when coming from friend/family, but coming from Drs, it's maddening !
@shay7821
@shay7821 3 года назад
I typically get so frustrated that people I’ve known for years don’t seem to “get it” and I feel very unloved or unwanted but this new perspective really helps. Thank you. ♥️
@EC-yd9yv
@EC-yd9yv Год назад
I hear you😑.... 🌹🙏✨
@7CFlo
@7CFlo Год назад
I totally understand that.. I used to spend so much time validating things I said, it was amazing. Whether it was doctors, coworkers, friends, etc. I no longer do that, but I've hardened up with everyone
@joybird144
@joybird144 Год назад
Honestly, this is the only way… particularly for adults with chronic illness. It is the only way to preserve your mental health. It is hard when you want them to “care” yet again you cannot control them. At the end of the day, when this happens I at least learn how to not give my vulnerability away to those who I cant trust with it. Compassion is helpful. It is important that I do not take people personally and like you said find people who I can be open around. Chronic illness is bigger than the chronically ill person. Sometimes it is too overwhelming for those we expect to be there for us to face it.
@EC-yd9yv
@EC-yd9yv Год назад
It's unbelievable dealing with such disability and family etc acting like you should keep being your old self... 🌹🙏✨
@FLMegan
@FLMegan 3 года назад
Such great advice and Truth!!!! Im so glad my husband gets me and the rest can think whatever they want. I have zero energy to explain it. I may send one email and that's that. Luckily I've established myself as one not to mess with way way b4 this illness and im going to do what I need regardless and I speak my mind.... Let them choose their own emotions is 100%. Chronically ill People pleasers need a class on not being people pleasers. It does not mix with chronic illness. I can't imagine having this personality. It must be super stressful. Gotta fix that. 😘😁
@lifeisstrange2698
@lifeisstrange2698 9 месяцев назад
Its hard when youre living with the toxic family and you have chronic illness and they still dont understand you. And they shout and emotionally abuse you. And you get shouted at for being sick. You can't leave the house because youre bedridden most days and housebound. I feel like im being punished for being sick. Ive allowed them to do everything you've said but im a human. It hurts. I have no support. Id be more happy if i i never existed.
@kimrespess6580
@kimrespess6580 8 месяцев назад
I am so sorry that you are in this position. May the peace of God be with you.
@hannah__jemima
@hannah__jemima 6 дней назад
Been in a similar position but luckily was not bedbound and was handed a chance to get away so I could begin to heal. Every time they screamed at me to force me to promise something I couldn't physically do, I had a setback afterwards from the stress, so I was going downhill fast. If I'd lied to appease them and wasn't able to follow through, it would only have enraged them more. It is truly a tough situation to be in and so many people are blind to the fact it's happening out there all the time - people like us become invisible. Since there are two people in any relationship, it is not always entirely the sick person's fault - precisely because others have free will and we can't control them. When someone is incapacitated due to illness, there is a clear power imbalance - they can leave you, but you can't leave them. We can't blame victims for their abusers. There are people like me who, after gaining their freedom, do want to support and help others. In the Medical Medium community, GoFundMes are common to help chronically ill people who are working with the protocols and are in dire situations such as yours, and there are several charitable organisations with the same aim. They pay towards food, supplements, vital kitchen equipment and living expenses (eg. rent). They cannot rescue everybody yet, but they are growing. Maybe this can give you some hope that things are changing. 5 years ago I had no idea online communities could support people in that way.
@amber3574
@amber3574 3 года назад
Im really working on accepting my life on life’s terms. It is NOT easy. This is a helpful perspective ❤️ thank you
@clare1971
@clare1971 2 года назад
Just found this channel and it literally speaks to me. I have heard thousands of times things like oh but you look so well. I was diagnosed 30 years ago with lupus, fibromyalgia and a few years later developed a spinal osteoporosis and spinal curve due to taking high dose steroids for so long as well as a range of opiates including oxi, morphine and fentanyl
@Aimee_Esther
@Aimee_Esther 2 года назад
So glad my channel has been helpful. Wishing you the best!
@Msjuljulful
@Msjuljulful 3 года назад
My friends think im just boring because I skip all gatherings, somebody’s bd parties if they are in the pub or any other loud and flashy place... so they all say that ohh you dont like to have fun sometimes? Maybe you think too muc about it, maybe you should just relax, get a glass of wine, you must be too tense;))))
@suzq2744
@suzq2744 3 года назад
Parents are literally there to take care of their kids. You are completely leaving out youth with chronic illnesses. Some people abuse/neglect their kids with chronic illnesses and disabilities because no one takes their illnesses seriously
@Aimee_Esther
@Aimee_Esther 3 года назад
100% agree. Parents SHOULD take care of their children. It's unfortunate that we live in a world where that doesn't always happen. I wish I could control things like this and that no one was abused or neglected, (this is coming from someone who was abused, abandoned and neglected as a child) Unfortunately I can't control anyone but myself.
@suzq2744
@suzq2744 3 года назад
@@Aimee_Esther we can’t control others but we can still hold them accountable. Life is a two way street. We can keep our side clean but if others don’t there are consequences for that. Sometimes the consequences are legal other times people need to cut off contact to protect ourselves from people who are abusive. We don’t need to tolerate people treating us less than because of an illness out of our control. I won’t let people belittle me anymore. Being made to think I was just crazy or overdramatic when I was sick and needed help. Never again
@Aimee_Esther
@Aimee_Esther 3 года назад
@@suzq2744 YES! You are writing this as if you are trying to disagree with me but we are totally in agreement here 😂. This is exactly the point I was making. Others make choices and then we control what we do about it that is best for ourselves. Instead of trying to force people to be different than they are, or force them to feel and think like we do. Instead we share our opinions but let them make choices (whether we like them or not) then we can make choices for ourselves that are best for us after that. Maybe that's leaving the relationships. Maybe that's calling the cops. Maybe that's being kind to them but not opening up to them anymore. Maybe it's setting boundaries. It's different in different situations. But the truth is we can't control others. People will do it wrong (a lot). So instead of trying to control other people's thoughts and feelings, let's take the power back and control our own thoughts and feelings instead. Let's stop trying to force people to have our brains. (Hint: it never works 😅) I'm wondering if you didn't watch the full video? I'm all for healthy disagreements. (Aka letting others have their own thoughts and feelings, not forcing them to believe mine 😉) but I think in this case we are in agreement.
@suzq2744
@suzq2744 3 года назад
@@Aimee_Esther again I’m not trying to control anyone. Stop trying to twist my words🙄🙄🙄
@missequestrian3448
@missequestrian3448 7 дней назад
I don’t think she’s trying to shift responsibility and there’s limitation to every mindset! For example I have to be careful with self responsibility because I’ll spiral into it. But what she’s saying is a mental separation, not taking responsibility off those who harm people. Also I have to agree I watched my sister be blamed and not believed and in pain growing up. It hurts me a lot now but she seems to have moved through that well (though still with health issues). I also don’t want to bring it up or tell her I’m sorry for how she was treated in case she doesn’t totally remember or something 🤷‍♀️
@hbnpiano
@hbnpiano 3 года назад
Love this! I'm learning so much from you❤️. Slowly working through your courses too😊
@kirtisoma3211
@kirtisoma3211 3 года назад
Love you Aimee😘🙂🌷I really appreciate your video , you always inspire me / motivate me & encourage me. This video is really helpful to my circumstances 🙂
@amytowery6616
@amytowery6616 3 года назад
Looking forward to the upcoming videos for friends/family and doctors. Hope you and your family have a safe and happy July 4th!
@ClayWinter1
@ClayWinter1 3 года назад
Today is world ACC day. (Agenisis of the Corpus Collosum). It’s a disability that I have. I found your channel and started watching your videos, and I cannot thank you enough for your content. I struggle A LOT with my disability. Both mentally and physically, and it’s hard for me to express to others what my disability does to me. Let alone explain so others can understand. So thank you for not just this videos, but all of your videos. Stay awesome. ❤️
@MyDuckSaysFucc
@MyDuckSaysFucc 5 месяцев назад
No, you are NOT the problem. When people around you treat you like shit, almost always it’s their problem. Just because your sick doesn’t mean you are responsible for other peoples emotions and behavior
@Serenadesong
@Serenadesong 2 месяца назад
Yeah this video is seriously messed up, telling you to blame yourself for other people's bad behavior toward you when you're sick. I was broken up with because I'm sick and I guess according to her that was my fault.
@mikeknightofdawn
@mikeknightofdawn Месяц назад
Here’s a question that I imagine has been asked thousands of times: If my partner can’t handle agreed upon responsibilities on even a semi-consistent basis and refuses to engage in a conversation to put effort into improving the situation, at what point is it reasonable to re-address both expectations and whether there is reason to end the relationship?
@crystalroebuck6886
@crystalroebuck6886 2 года назад
What do you do when it’s you with chronic pain and illness and it’s your man that don’t understand
@williamPuckett
@williamPuckett Год назад
Some people have to get it to get it. They're that dense otherwise.
@7CFlo
@7CFlo Год назад
You got that right...they will drain you if you let them. It's either I spend time validating my issues with them, or just shut them out. At this point I shut them out, and if they complain about their health, I ignore them
@williamPuckett
@williamPuckett 11 месяцев назад
@jessicaras4540 When I think about faith, I think about I can take God at His word on anything as stated in the Bible. He doesn't say when or how but the promises are sure. The faith chapter in Hebrews 11 is a good chapter to study pertaining to faith and I have for years found strength in Psalms in times when I needed my spirit lifted. But what God does ask of us on our part is to strive to keep the law of love or the golden rule which is to love God with our whole being and love our neighbor as our self. I believe in treating others as I want to be treated but also in choosing company such as David did in the situation with Jonathan & Saul or Christ in relation to His relationship with John and the Seduces or Pharisees. I believe in choosing company, not being taken advantage of by others, not hating them but at most hating the sin because I have work to do in my own life. I figure with 24 hours in the day there are people I want to spend time with and ways I want to grow as a person. But also, on the flip side there are weaknesses or shortcomings I want to overcome with God's help and people I want to avoid because they don't have my best interests at heart, they may change or may not. When comes to people I just want to care about them but spend time with the Jonathan or John type and avoid the other types with limited contact. I figure it's a wise thing to do.
@user-mn6fr1fi3r
@user-mn6fr1fi3r 7 месяцев назад
One of the most hurtful sentence people can say " This is too much."
@Dumb_Anml
@Dumb_Anml 6 месяцев назад
Ive been thinking of getting a rollator for PoTS, but internal ablelism loves to haunt my mind, I’m not exactly the main demographic for it if you get what I mean. I mean I’m 22, if I get one I’d just be stealing it from a old person who deserves to have it much more than I do… You would not believe the comments I’ve gotten for the past decade and a half, even irl ones that basically confirms all my internal ableism thoughts, like the stealing from old people one, I’m too young to be sick, I don’t look sick (visually) and hell for 16 years doctors have basically done every test under the earth for anything relating to my pots and fibromyalgia and they find literally nothing wrong with me, I even had to endure a very painful spinal fluid test only to get the only answers I always get, everything is fine you have nothing wrong with you… so yes I’m self diagnosed and trust me I get enough comments like I’m a faker and shit enough for that alone….
@kenadyforrest513
@kenadyforrest513 3 года назад
AIMEE!! what doctor did you go to to get your official diagnosis?? i really believe i have pots and i’ve been to so many doctors who say i’m fine and just tell me to eat healthy. but i feel like i need a diagnosis for peace of mind. i’ve been struggling for over a year and praying for relief and i found you! i live in idaho only a couple hours from utah but i want to go to your doctor! there’s none in my area who know what it is :(
@kenadyforrest513
@kenadyforrest513 3 года назад
i honestly don’t think a doctor will help me other than giving me the peace of mind that i’m not crazy! i have started to find things that help me (diet, socks, salt, water, laying down…) but i feel crazy sometimes! especially when friends say “well have you had an official diagnosis?”
@Aimee_Esther
@Aimee_Esther 3 года назад
I just saw my primary care doctor, he's an internist
@suzq2744
@suzq2744 3 года назад
This puts all blame, on disabled persons & absolves abusers of any responsibility
@Aimee_Esther
@Aimee_Esther 3 года назад
If you know a way to control other people, please tell me how!
@suzq2744
@suzq2744 3 года назад
@@Aimee_Esther I never said control other people. I said we need to hold people accountable. Big difference👍
@SN-sz7kw
@SN-sz7kw 2 года назад
Holding others accountable for abuse is not the same as controlling their reaction to one‘s illness. You seem to be on an entirely different track.
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