Chronic Illness: When Family & Friends Don't Understand Your Health. Life with a Vent 

Wow. What a incredibly Beautiful and Brave soul! Your incredible Spirit inspires me. I've had chronic health issues for 20 years and have dealt with many painful moments when I realize someone thinks I'm just a hypochondriac. It's wild to put up with the physical pain, the limitations, the emotional pain that comes with all of this and then have to deal people you love having disbelief when trying to explain it to them. I don't wish chronic illness on anyone but those of us who have it and keep waking up and doing our best are true warriors. My health issues are getting quite extreme and the fear of the pain getting worse is paralyzing at times. I know there are many out there who have this same fear. Bless all of You Dearhearts out there living on a hope and a prayer 🙏💚🙏

Thank you. I am 22 with chronic illness, my friends do not get it whatsoever, they guilt me and shame me so disappearing because I’m I’ll. Can’t blame them as I disappear for months. I used to think like you thinking people would be able to notice/understand but they don’t.

Your voice is so soothing,,also your speech is impeccable

Thank you for having the courage to share this!

I fully understand you on every point since i have also had similar experiences.therefore i stay away from those who lack understanding.i only maintain close relationships and frienships with those who understand. Wishing you a wonderful week filled with live,joy and positive energy🤗🤗🙏🙏❤❤

Pepermint is great for stress and migraines . Sending you love ❤

My heart goes out to any struggling with ill health and wish them all the best and hope they find better days ;) sending

girl i know, the worst is when you have chronic pain like me, since its not something you can see, people will try to gaslight you into thinking youre "being dramatic" or making it up, my own doctor even told me she would put me on xanax because i was overreacting and just "nervous" when i actually did have real pain wow... its hard to hear it from your family and friends too

My goodness, thank you so very much for your time, words and sharing. I am capable of finding my way through most days with creativity, a sense of purpose and optimism relatively speaking that is, (not compairing myself to my life prior to becoming ill). Im proud of my emotional will in the midst of difficulties, disappointments, lifestyle changes, exaustion, pain, grief, etc. I so appreciate your post as I've pulled back from Joanns in my family too. Ive questioned myself as ive pulled back from aspects of community also, not quite intentionally yet necessary due to exhaustion. I've had to learn for myself how ro pace myself in an entirely new way, rest when needing to even if my spirit would rather not. The constant outside judgements and lack of understanding has been so difficult, especially as I used to be a social person. Finding contentment in my new and necessary way, along with being gentle with myself as Ive been learning the difficult lessons that come along with the "Joanns" in my life. Your post has me realizing that it's not just me, thank you so.

I think I have just lost a friendship with a lovely man with whom I went out with on a regular basis. My problem has been classed as heart failure. I have more and more often had to cancel 'dates' with him due to rapid heartrate and have been too breathless and tired to even comb my hair. No matter how I explain my illness, he seems to think I should be getting better by now and won't grasp that I will not. I don't wish to paint him in a bad light as he is a lovely man but it must be frustrating for him as well. I have decided to stop apologising and explaining myself as this illness is not my fault and people will have to take it or leave it as I have to. What a relief to come across your site and I love your calmness and positivity. All the very best to you!

I cry everyday.....i don't have anyone to talk to I became my own imaginary friend comfort and even hug myself Being 16 and not having a normal teen life I just want to be as normal as others I have tingling and numbness in my hands arm pain....... some other symptoms in my head .. it can be an nerve damage or MS wich i'm so scared of but there is no one to tell my fear..... Hope you are doing better💘☁️

You are so beautiful ❤im so so sorry hun. I have progressive Multiple sclerosis and am nearing the end. Im praying for you❤

I think it’s important to realise that no one can actually feel your pain as well you are your own person so even if the person or people that you love finally do Understand they will never truly be able to understand what you are going through so it is important to recognise that it’s probably because one of the reasons why they might not be understanding is because they don’t know how to react or help

I truly don’t understand people like Joanne. I’ve been in chronic pain for 36 years. Before pain entered my life I knew two people with chronic pain and just listening to them made it my worst fear.

Holy cow that is really what it’s like having these conversations

Please do one for family and friends who genuinely do care and are terribly afraid of saying or doing something that would sound careless or hurtful. Not knowing how it feels makes it hard to know what to say or ask, and then you don't want to ask too much because you might seem rude or prying or just curious rather than caring.

I have to use analogies all the time when it comes to living with my schizophrenia. Imagine being locked in a room with no one to help you. But you're not alone. You're surrounded by people. And they're all talking at once. Sometimes to each other, sometimes to you. Sometimes, they're talking about good, but usually not. Sometimes, they tell you about how people think about you, want to do to or with usually (usually not good things). Sometimes, they're accusatory or derogatory. Sometimes, they're grandiose and convince you that you're a superhero or even a deity of sorts. But no matter how much you plead with them to hush, no matter how hard you plug your ears, you cannot drown out the voices or images. That's what daily life with schizophrenia is like for me.

I really enjoy your videos keep up the good work I’m proud of you I gave you all the credit in the world for doing what you do with the disabilities that you do have

Love this! Thank you for sharing these tips.

I’ve had Multiple Sclerosis for the past 20 years. I have two grown daughter’s but they have their own families now with young children so I can’t rely on them much. This past week my husband through a large item at me. Luckily, I ducked and it hit the wall and shattered. He said he’s fed up, he said “poor pitiful you”. I take 17 different medications a day. For the past several months I’ve developed multi resistant bladder infections. There are no oral antibiotics I can take any more. I also developed auto immune hepatitis from being on Macrobid for so many years. I was on it prophylacticly for bladder infections. I can’t leave and live on what I receive from social security a month. I feel trapped and so sick.

Great tips, Thanx so much. I wish you the best, fellow warrior!! You are precious 💗💗 God bless you 🙏

Thank you for this!! I was on a ventilator for 3 months in 2011

You are a BEAUTIFUL soul. Good for you helping others. ❤❤❤

I love your Lion king pillow !!

thankyou

I love that beautiful smile, thank you and bless you.🌹🌺🌷🏵

1800 Thank you so much for sharing this ❤

Thank you for sharing. I live in Iowa. For last 35 yrs with severe crohns bone deg disease , migraines. I totally understand as some people will not accept us. I only spend time with those who do.

Thanks you might have just saved me from saying something rude to a family member who hasnt seemed to care at all lately

I've had Long Covid for two years, and my sister literally every time I speak to her she acts like it's the first time I'm telling her. I'm almost bedridden and she acts like im just avoiding her and "giving up". Ive sent her links and documentaries. She literally never asks how I am. She's willfully obtuse. It's literally broken my heart as she's the only family and support I had left. I basically dont speak to her because she's been so cruel. My cloesest friends didn't care either. My coworkers have literally been the kindest most supportive people I've had in two years. Thanks for sharing your experience. I never saw this coming with any of them. It's so baffling.

Hope you’re okay my friend

Im not chronically ill. But if you worry about if you”ll be a burden to your friends, for the simplest things, they are not your friends.

That's my family they called talk about the weather they do not want to hear anything quote unquote negative because they say it stresses them out even though their lives are healthy and hunky-dory for now.. I've talked to myself blue in the face trying to make my daughter understand that this is not going to turn out good my cancer and yes I have pots also it's a terrible feeling you feel like you're going to drop dead just trying to buy groceries because no one will take you or help you in any situation whatsoever though they live in the next house beside you I appreciate you trying to put this out there in a manner where someone else might understand but it's all up to the other person eventually though you won't have to deal with them because we all get old and Ill we do the best we can on our own

I have pots, gastroparesis and a constant tremor that escalates to a full blown convulsion at least once a month. It's incredibly embarrassing, not to mention ugly. Most of my family except my mom won't speak to me about any of my symptoms or my illness. My mom told me they think it's enabling me. I feel so abandoned. They see my body getting taken over and think I'm making it up? The more I look into things I think I have Dysautonomia. I just found out my aunt has POTS and my older sister has vocal chord paralysis (also a form if Dysautonomia), so I think it's genetic, yet the family can't be bothered even when I think the most unsuportive sisters kids both have a form of Dysautonomia. Maybe she can't admit my health issues because she'd have to face her own kids issues then. I used to have an active social life and have tons of projects and friends. My world has completely disintegrated. I can think of a million other things to do with my life, but they act like nothing is wrong when I feel like I'm dying. I don't have an advocate and desperately need one. It makes me so sad on top of all my physical limitations.

Thanks so much for your videos

Friends

I can understand..happens to me too..though it's CKD..they say it's normal...only i know how it feels...my body aches with everyday cramps and lethargy.

You are plausible.

POTS is very serious!! Iam so sorry people dont understand your illness enough to take it seriously! 😢😢😢 its the most isolating feeling to see family going on with their lives while we are left behind. Its most exasperating and downright irritating you just feel like youre going crazy. Ilness separates the living from the dying. Even though we are still alive, we are closer to the end of life than the healthy family members! We have suddenly realized 😮 oops! We are here, and they are there! They do try hard, but they have to get breaks or they would not get to go live THEIR best life before their life gets a serious sickness. So I give them space and I know they love me and they come back when they are ready to hear me go on forever fussing about crazy side affects! 😂😂 which Iam guilty of 24-7 lolol. I live in my own part of the house with my cute little emotional support dog, so my side affects dont keep my husband awake at night. Hes getting older and needs his own healthcare too. Ive always been a very private person and used to being alone. So its okay. I wouldnt want my family to give up every single minute to focus on my breast cancer crap. 😂 Iam sick of hearing my own self talk about side affects lol! When I start feeling anxiety looming its cloud over me, I ask myself- calm inner voice, where are you?!?!? 😂 Sometimes I turn the tv on to distract my anxiety! Nothing like the news to be the first thing on there! Omg! Lol so sometimes I just go watch kiri and lou or good old peppa pig cartoon! ❤🤣🤣🤣 NO NEWS channels lol. I feel sad you are having POTS. That heart racing stuff is miserable. I have a milder condition of it but not near as serious as youre struggling with, bless your heart!!❤❤❤❤ I wish there was a cure for your illness. Iam in my last phase of treatment to prevent BRCA from having any regrowth. Going on my 3rd year of recovery. Rest as much as you can and dont let family get too pushy! Do you have a support dog ( small size ) that would lay beside you when you cant set up? I hope their is someone there to keep you from falling! ❤ prayer helps me the most. God bless you young lady!! 😊✝️🙏

I have well different diseases to you , suffer from autoimmune stuff and fibromyalgia. In a stupidly painful flare ATM and my bf offers no sympathy, empathy. Just tells me to stop cooking him dinner if im just going to complain. Idk what to do. It's making me even more depressed than I already am from chronic daily pain to not have support at home.

I just think it’s important to understand that not everybody in life is going to see and feel how you feel because you can’t do that because it’s impossible you can’t feel someone else is fine however you can be kind and you can be and caring we don’t want sympathy we just want to be understood unfortunately that’s not always possible so take comfort in the people that you know that understand you and in those people that don’t we just hope and pray that one day they will and there’s always one thing that we all have which is hope and love no matter what the day brings us there is always hope and love and forgiveness because sometimes people don’t actually realise what it’s like until they’re in our shoes and we have to be a little A little bit open-minded I’m just hope one day they will understand

you seem rather passive aggressive and if so I totally understand it

Friend i am kavi .all drug or medicine have side effects our medical student says that is ADR adverse drug effect you see In all the drugs .so don't think about that side effects 😉. My thoughts why you consecrat in yoga there have all yoga exercise especially breathing exercises . Friend if you like means only do this. Then ignore the negetive i like that in your speach .so i really thankful to you for make this vedio.okay friend bye take care your self and take care your family .bye friend i am kavi from india

Sadly this fits with many doctors

Wait your family doesn't understand???? Holy shit toxicity is serious... We need to start holding people accountable for toxicity. Maybe if they don't understand like our families and our mental illnesses they're not meant to be in our lives. Maybe when family and friends starts being toxic it's just like momma bird throwing her baby out the nest and expecting the baby to fly on its own and be independent... But you need people... 7.9 billion people and not a single person can stop for a few minutes just to literally save a life.... What makes all of this painful to hear is that I grabbed a gun and put it to my head several times and pretended to THAT to myself because I didn't grow up with anyone... I had so much toxicity in my childhood and loads of menta abuse, sexual abuse, and physical abuse on a torturous level... I was a Prisoner of war as a child with family and I was bullied alot. I just wanted someone who accepts me for me and love me like I love them... It hurts and the hurt I've dealt with was really abusive from close family and friends. I wish it was just neglect but the abuse was bad. Even friends had a piece of this pie and I couldn't leave them because I would've been lonely and being alone hurts... My inner voice wants me to die... I want the sweet release of death... I can do all of these self care things but I have something that makes it hard: existential dread. My mind sees everything as pointless and everything I do is meaningless... If you don't have existential dread and always wonder what the meaning of life is the you're good because distraction would keep you from that.. I wish I could forget things... Unfortunately I don't get to forget somethings... A curse of a good memory.. I hope you feel better hun.. I'm so sorry for being whiney while you're Ill... I'm sorry I'm so sorry... 🥺😔😞

Matko najświętsza proszę o pomoc dla mojej przyjaciółki

But you can speak, why are you still in tracheostomy?

I am so sorry people talk to you this way. It adds insult to injury. What maturity you have to exercise, huh?