Living with Chronic Illness: Do Your Loved Ones Understand?

When my husband and I stared dating him I told him a bit about some of my conditions and he spent an entire weekend researching them so he could have a better understanding. So he does because he makes the effort

Absolutely yes, but took him 2 years to understand. Even family members are not able to understand because I myself didnt even understand it and still don't have answers to many whys.

Most of my family understands\wants to understand zero. A few exceptions who seem to try to relate though.

Nope it's sad that family thinks we can just ignore it and push through it. I feel nobody will get it, or understand what we go through unless they go through it, but dealing with this mess I don't wish this on nobody. Anxiety, dizziness, panic, headache. Scared to move etc....

My mum does because she has the same stuff. It's all hereditary 😂 My dad and friends not so much. My friends have just one of my many conditions and they think that they are in so much more pain than me but I can't do most of the stuff they can. I brung up my pain once and they ignored me. They talk about their pain all the time and I can't

I don't think anyone understands how it feels to suffer from depression apart from people that also have depression

No. Nobody in my immediate circle knows. I've had to explain why I'm on my diet and why I take so many medication/keep getting switched to different meds so many times. The most that happens is people will say I'm being a drama queen. No, I'm not. I'm in constant pain for various reasons.

No. I only have 4-5 family members who are willing to help me/us.

😥

✋✋❤️❤️

Hell no....if anything all they do is judge me tell me its not real I'm attention seeking....!!!!

Fuck no and they have no empathy for me they all hate me and it shows.

I hope so

No I'm constantly having to explain

My mother does because she suffers from the same issues but at the same time I feel that makes her slightly unsympathetic to mine because if she can cope then surely I must be able to. My friends don't really know, but I feel like they would understand more than I think they would.

nope

People tell me I just need to exercise or rest and I’ll feel better. But it’s chronic 😂 as we all know it doesn’t just go away by resting or exercise which can flare up your conditions. Some ppl are in denial

Most definitely not. I have autism and many allergies but I don't feel like I'm understood.

Definitely not. I try to hide my feelings but I can only do so much. I think that people know I’m struggling but don’t understand how seriously.

No, they say they do but I don't think they do

My family sure didn't. I have the highest degree of anyone in my family (master's), and I became homeless because I am not able to stand all day and couldn't get responses to my applications for desk jobs. My mom's attitude was that I should have majored in STEM even though the teachers discovered that math was a struggle for me as far back as second grade. I excelled in other things and was in the gifted program, so it wasn't treated as as big a deal as it should have been given the state of the economy this century.

Not even a little

Absolutely not.

Absolutely not. Most of my family is convinced that my genetic conditions(one of which my mother has) can be cured if I stop using my phone and exercise more. All of my diagnosed conditions are incurable and degenerative.

It can be a cold experience

No most don't but I can say only two does because they both has their own conditions. We talk about it how if one is not going through one will not understand

I think on a certain level, yes. But in other levels? No.

Friends who gave similar conditions understand a lot more than my family does. I wish it was easier to help them understand and accept that I struggle with things rather than making me feel like a failure for having trouble with things.

no.

I try to hide it when I am in a lot of pain with my back. I think everyone would get sick of hearing me, and about how tired I am x

I don't tell my parents about most of my symptoms

Partly, but my exs parents never did and thought i was useless and lazy

Some of my family, mostly my mum and dad, have chronic illnesses, and some of my friends do to, but no one gets it, no one has my exact combo of needs and symptoms, and it doesn't feel like anyone really tries because they have chronic illnesses so they feel like they do get it when they dont

My dad is starting to get it. I think he's surprised that I can be bedbound on occasion. The rest of my family are used to me complaining about my conditions though lol

I got everything FROM my parents. My little sibling is also on the spectrum and my older sibling is autoimmune. 😄

They have no idea and think I'm making it up.

No, but then agian... Somedays I can't believe I am living.

My best friend yeah since we're both autistic, depressed, anxious, etc. I mean obviously it affects us some kind of different ways, but my family definitely doesn't understand at all

No not at all

Yes my mom has a veryyy good idea of my conditions because she loves me a lot and always analyses my lows and downs, my medication regimen etc… i am grateful. Honestly it helps when it truly loves you and wants you to be better

Family, yes and no, certain things they understand, others, they don't. Friends don't understand the full extent of it, either

Honest answer my parents nope never really have and my partner actually uses it against me and makes me worse 🙃

Sometimes - now they’re diagnosed they “have to” accept it if you will. Defiantly now it’s official. My friends are more understanding than my family. Many of my friends are also neurodiverse and we understand each other really well. I think my family dont like that many of my mental health concerns are caused by historical trauma - many of which they contributed too. They understand the physical health - but don’t take responsibility or like to recognise mental health struggles (e.g. PTSD).

No! Not at all I'm just lazy and need to grow up, I no longer talk about it because of the criticism and negative remarks people make.😥

My friends do their best, and some of my family sort of get it? But typically no, most people have no idea what my individual experience is like.

Literally NO ONE understands and I've died trying to explain over and over, I cry everyday about this. the thing is they need to understand so they can support me but its gotten so bad I've just given up and isolated myself and suffer in silence and sometimes they make symptoms worse and don't even notice or realise . My kids don't understand at all my son is starting to help me a little more as all he sees is me stressed out or upset but thats a start, my daughter is special needs so she may never understand bless her. ive literally spent a whole 6 years of my diagnosis telling everyone,l close to me trying to explain what its like and how it affects me, screaming out for help & having breakdowns. Its changed my life i had to leave a job i loved, and completely change my life around due to fibromyalgia, im literally telling them everyday what it feels like so much that's all I talk about and it's making me feel even more depressed 😔 ugh... that's only scraping the barell right now

Nope not at all. My kids like to pretend nothings wrong with me. And my boyfriend likes to pretend he understands but he really doesnt

My family accepts it because my sister is a Nurse RN

They don’t care !

Not one bit

nowadays, they’re learning. it took a long time for them to realise the severity of what i deal with - even now i’m sometimes labelled as “lazy” and such. it helps that my mother has chronic illness too, and whilst we don’t share the same symptoms necessarily it does allow us to empathise with each other more.

Not even to the slightest bit

Absolutely not

To an extent they do but sometimes they forget. Sometimes I wish they could spend a day in my shoes

Luckily I feel that my mum understands really well, as she has fibro herself now too... it took her a long time to realise how much pain I was actually in, and that I wasn't just "putting it on", but once she realised, she was a lot more understanding and caring about it, and made a lot of effort to learn about my conditions and how they affect me. My partners are also absolutely wonderful at this, and they listen to me so well they know when somethings wrong before I do most of the time! - they can see just from how I move whether I'm in a lot of pain or not, and they do their best to take care of me, even when all they can do is be with me through the pain xx💕 It is possible for people to understand or at least try to understand what you're going through. And if they don't want to learn, they aren't worth your time and effort to teach them - your energy is much more worthwhile elsewhere xxx

Not at all and I don't really understand them either. I think its more frustrating with my mom since my adhd is a recent diagnosis that i am learning about as well

I don't think so. It's hard to grasp the condition capgras syndrome alone, even more so in someone so young. Most people just try to avoid talking about it because it's kinda crazy honestly.

No I don't think they can even imagine what I go through. I was born with birth defects of the kidney from my birth mom using drugs while pregnant with me. I get infections constantly and the bacteria gets resistant to the drugs so I have to wait it out and suffer. They will never understand 😥

My parents don't understand or care at all. With the pain I'm in on a daily basis, some being worse than others, I dont want to be out of bed. Standing doing dishes or making dinner kills me. Sweeping the floor kills me. Other days I'm ok for just enough time to do one of those without it completely wearing me out. My anxiety and depression and all my mood disorders make it hard to want to get out of bed at times too. One day I want to stay in bed, the next day I'm eager to help. I don't pick and choose which days I want to feel good. When I try to explain it, all I get is oh come on, give me a break. Or I hurt too you know. I've seen them in pain. Never knocked to the floor from sudden shots of sharp pain, or flung to wall because your back spazzed so bad it jerked you. Or your hip/groin area give out and you barely catch yourself on the counter. All of this and more and I can't get disability. I was also told by a damn Dr before that this is normal for a person my age!! Im only 43! I have also lost strength in my right side, which I lean on more than my right. Told that by a dr as well. With my physical and mental issues, I can't work. But it's normal. FML

Some. But certain ones don't understand how treating mental health with therapy and meds is just like treating any other medical issue. Which I think is why some of them struggle themselves.

My family tries but I don't think they have any clue, whenever I speak about any of it they respond in a way that shows that they think its not even close to how bad it actually it. They mean well and they do try to understand, but they don't fully. My friends happen to be chronically ill or deal with chronic pain as well. So I can tell they understand to some extent, but only with some of my symptoms. But they try and understand the parts that they don't experience as well too

Not even close. They think they understand because of their own conditions, but they do not understand.

My family understands my issues they all have their own medical problems

My boyfriend is so accommodating and understanding. He doesn’t understand my situation but wants to help in any way he can and I love him for it. He’s truly a blessing. It’s hard because we are long distance and I wish we were closer!

No no I don't think they do or will until they experience it for themselves. 😥

One does, but the rest don't. 😥

My friends do, and so does my partner. My family I don't think should know.

My partner is very supportive, however, she sometimes struggles with my mood swings, but that's understandable. My daughters help me when I have a seizure, even though it can be very scary for them seeing such a thing, my eldest has done some research into different seizure disorders in school (she's only 12), in an attempt to help me through it all, my (autistic) 8 year old though, she gets me a drink when I come around, she helps in her own way and it is really good for the after seizure dry mouth. All in all, I'm in a really good place for support, even though these days it feels like my girls are caring for me when I should be the one caring for them.

no, but they’re trying their best to understand me. so A for effort.

My family is pretty agreeable, which sounds nice but also means I don’t know how much they understand or believe my symptoms vs just being nice. I tend not to talk about it much outside of my nuclear family and am constantly notice when their minds start wandering to other things. I get it though. I’m certain I have responded the same way to others before I understood the struggle. It’s really hard to understand when you have no comparable experiences.

No. My husband says he understands but yet gets annoyed when I need to rest, or I am feeling more sleepy than usual. Doesn’t understand I need extra rest in order to feel better. My mom and sister think I’m just over dramatic and don’t believe in my conditions. They all think I’m just taking my meds for “fun”. This is why I joined this group. Because I know no matter what I post I won’t be judged and I can vent on here if I want to. I Can talk to people who actually understand and are going through similar things.

I believe my partner and aunt and uncle do. My dad spent 4 months with me in a different state to under go treatment and I believe he gets it now. My mom is starting to get it more as she's seeing how fast I get a rash or hives to the smallest things. I've also been showing her subluxations and asking her if things look even. It's made a big difference

Not sure

I do but I dont.. I'm not 100% sure they /understand/ me. But I know they love me, and even though sometimes it's harder than others. I know they'll support me, even if they don't understand.

Hubby yes, everyone else...no 😢

Not at all.

My literal physician parent doesn’t believe any of my symptoms, even after being hospitalised. There’s some folks you just can win over, and that’s not on us. Still sucks, but I’ve found it better to put effort into relationships with folks who are willing to understand and care about my well-being 😌💕

nope ❤️

My husband never understood my migraines until a few years. They had that commercial on that said if your migraines are like this.... It really scared my husband then shortly after that we were at the dr office and we were looking at the mri of spine which is sitting 2/3 out of a lineament. Nobody understands my nerve damaged spine and organs. Or the severe daily migraines

Absolutely not

Hell no ❤️

no & they don’t make an effort to either

Hahahaha that's funny. HELL NO.

No

Kinda

I try but they will never fully understand. No one can unless they have experienced it.

My adult children do but my mother doesn't.

My mum understands quite well as she has the same symptoms but my stepdad thinks I’m lazy/cba but is completely the opposite with his daughter, who has similar problems to me. It’s like he tries to d***-measure between me and her. My two friends understand pretty well but I try and push through it when I’m with them because I don’t want to be a burden on anyone, especially them!!

No. Not at all. And no amount of explaining will ever make them understand.

My best friend? Yes. My family? Absolutely not

Not really no

My grandma no but my mom and dad yes.

My ex couldn't understand my conditions or how they affected me

Considering I have so many of them.... Not at all. It has an impact on socialization, relationships, mental health. I've taken an interest in the medical field and have been mistaken for a nurse only because I could articulate what I had going on with me. I can't use that knowledge in the industry though... because of my conditions.

I think the people I'm truly close to do the best they can to understand, but most people that are really close to me don't have chronic conditions.

Not My Biological Family

Most of my immediate family is disabled but so far no one truly understands even if we have the same conditions. I have far more than anyone I know and they impact eachother. I don't think anybody really knows how hard it is for me to get up every day or meet deadlines. Some of them try...but most just don't care because "I have the same thing and I'm fine" but it's not the same...because it's not just 1 thing its every condition all day everyday...

My friends try, my family though not even close. I have a small circle of friends and my bestie understands what I go through better than any mostly healthy person really can.

nobody will every truly understand, they can’t, but I know how much they understand because they see all amd go through it with me. these conditions we have… they can and do affect others in our lives (not implying a responsibility/ETC) and it’s crazy to be connected like that.

I wouldn't say they understand but for the most part they are respectful, work colleagues/managers on the other hand 🙄 Everytime I'm told 'oh I've had a bad back before, just grab an ice pack out of the fridge' or 'ohh I have to go to the toilet alot, it's only about 20 steps from ___ you' ll be fine'... I could scream...

No. They tolerate me but do not have a clue what I live with every day. Sometimes they just get irritated with me.

I come from a family who is very ignorant about mental health and it is very stigmatized. No wonder everyone is suffering in their own cycles. We have very limited vocabulary for describing emotional experiences, which are mostly invalidated. If you asked them “how do you feel” they would get confused and not know how to answer most of the time. I know I still start describing events when people ask me 😅. Depression, Anxiety, PTSD, OCD = “It’s all in your head, get over it”. Signs of weakness. Gender = what’s in your pants. Trans people are crazy. “Stop pretending, be honest with me” “you’re not being honest with yourself” So no, my family has no idea what I experience, and if/when I tell them they don’t believe it. I feel sorry that they fear emotions so much. I try to educate myself and then slowly educate them.

No, unfortunately they really don’t. 😞

Not at all, I stopped talking about my health to mostly everyone

Nope not a clue not even my partner understands fully. I think your best judge is always yourself.

No. They can try and sympathise but they never truly know what it is like. Sometimes people with the exact same conditions struggle with understanding how you maybe feeling. No one person experiences things the same way as another. It takes time for everyone to adjust after a diagnosis. The biggest thing to remember is: Be Kind, to yourself and those around you. Its not always easy but just as you are grieving losing your old self and accepting the new 'normal' they are adjusting too. Sometimes I want to scream at my family/friends, comments like "Just keep your head" or "Oh aren't you looking well" drive me mad when its taken me everything to get up and dressed. But they are trying to be supportive and trying find something anything to say to make me feel better. Their intentions are to support me and comfort me and I know when I need them they will be by my side. Its just hard on everyone but without their support it would be a hell of a lot harder.

Absolutely not! I think they try their best though. I spent years trying to get my family to truly know what I’m going through- but it’s impossible. They never can truly understand chronic illness or pain being able-bodied. They can sympathize but not empathize. But Ive discovered that their validation isn’t necessary for me to feel confident in my skin and conditions. I took the time to grieve my old life and the desire for pure understanding. It’s very lonely at times but family can support you in so many wonderful ways without understanding the pain you experience or what you go through.

No, I have Ehlers Danlos Syndrome, and one of the main things I struggle with is my joints dislocating. I don’t think my family began to see these symptoms of my illness until I got a concussion from my knee coming out and falling in the shower. More recently, my family has seen my Eds get more progressive and have better learned what it is like. I think some of them understand but definitely not all.

I can be screaming on floor in pain and my dad's lines is 'do more exercise'

Not in the slightest 2 out of 3 don't believe it

No... even my boyfriend sometimes will surprise me with his ignorance, and he's the most accepting person in my life.

not really. my mom has been recently feeling bouts of anxiety so she kind of gets it now, but im still misunderstood for the most part even with my paper diagnoses.

Some do, some try to and a few don't even try and think I'm lying about how I'm feeling.

No

Just my oldest sister

Somewhat but not really

Not the slightest bit , it’s a battle just to get out of bed.

Some do some don't and I think it's really difficult when my family continuously forgets I need help or adjustments I feel like they don't care even though I know they love me 🙃

Not at all

Have I said no to this.....well it's a no from me Simon

Hahaha no hell no I hear a lot of "oh sometimes my muscles hurts to" and "I have sad memories to"

NOPE

No, the people I live with tend to make up their own stories and add stuff to mine that isn't relevant. My search history isn't usually about me. Sometimes it is for a friend. Sometimes it is for a freaking crossword clue. I belonged to a group for older adults and I looked up a picture of Hitler to reference the atrocities... I am perfectly capable of speaking for myself but few let me or give me space to speak.

Nope, not a clue. I try to explain it to them but they don't think it's that bad.

No

No, they don't like me to talk about it. They don't understand and don't seem to want to. They want me with abelists on MY health and care. My mom has her own set of physical issues and is the kind of person that says "just be positive" when I talk about my symptoms meanwhile she's always talking about hers

no. my mom has always been severely chronically ill, but even she never believed me about my symptoms growing up.

No. They basically tell me to get over it and life goes on🥲

My health problems stem from my family history, so I guess they understand, I just have the ultimate mashup of their issues. The problem is that they don’t seek out help for themselves, so it’s hard for me to do it for myself. My family sees chronic pain as normal, and I’m still learning that so many of the things I experience are abnormal and resulting from my health conditions.

No idea

No

Nope 😥

depending on the condition, yes. i share a handful with both my family and friends.

Nope

Hell No! 😥

Not at all. I think some of them try, and maybe understand parts of it. But one person in particular doesn’t even try, and honestly tries to downplay my conditions any chance he gets. It is extremely frustrating and hurtful.

No, I find some family deliberately try to ignore my chronic health problems because it’s uncomfortable to think/talk about. It does really annoy me though

Absolutely not!

Not really everyone still expects me to do everything a well person would do x

No. I’m expected to be perfect and do everything as the oldest child still living at home. My brother can do anything or act however he wants and it doesn’t matter. Even though I struggle with so much and he doesn’t

No

Most of the time

Absolutely not. I think they think they do when they get the slightest taste of anxiety or depression but they don't. They don't deal with the tons of stuff that comes with it.

Eh, some of them share my mental conditions. But others just say "it's a hoax" or things like that

People act sympathetic and all but I still can't talk about anything. Even my purely medical conditions, hypothyroidism ties into lithium as a possible cause which I'm on for chronic suicidal ideation. When I say I'm autistic people picture the polished and selectively shared version they see on TikTok then get all [surprised Pikachu meme] when I can't always talk or keep up with hygiene or I have meltdowns or get stranded downtown or get stuck on basic social things or have incontinence problems from low interoception, etc. Also my dad's side can be rather transphobic.

No, but on some level they do. They don't understand chronic illnesses but they definitely try to be helpful

My mum surely tries, but especially the fact that I still need to be careful with Covid makes it hard. My family lives in a different country so I’m visiting very rarely and need them to be careful as well while I visit, but mask slip a lot, are just „being forgotten at home“ or I get constantly asked „can I take it off now“? It‘s just frustrating and it’s making me really anxious during visits. My boyfriend however really gets it.

My fiance and I are constantly battling against my family. Hers has become more understanding but I think there are still things they don't believe. My family on the other hand calls us lazy, that we mooch of others and that our pain isn't real because we to young to understand it. And that if it's not medically diagnosed we don't have it. My fiance and I both deal with invisible disabilities and it hurts a lot knowing those Im supposed to love, don't care.

Absolutely not. My mother routinely tells me to just get my license even tho I'm legally blind... She has also expressed that she believes suicide is selfish. My brother is Bipolar like me and he doesn't get it either. The only people I can actually talk to about medical stuff is my fiancée and my friend who also struggles with the same/similar conditions as me. It's hard being a spoonie and having invisible illnesses tbh.

They try but I think it’s hard to try and think about how it is to live in my shoes as they can’t imagine the pain and stress and I out of a brave face constantly so sometimes they can’t even see anything is wrong

No don't think in the slightest they have any actual idea. They think they do, but they don't. When I ask to try to meet me in the middle, it's like they can't because apparently to them I have to meet them in the middle but they don't have to. So frustrating. So I just don't even bother them.

No remotely

Absolutely not

nope

Nope

No 😥

Never ever 😥

Yeah they definitely do they’re so understanding :)

Yes and no. Sometimes they understand stand and others they don't understand what it is like.

I don't think anyone can fully understand what you're experiencing. With my family, I avoid speaking to my parents about my mental health because I know I will get responses that are misunderstanding and/or negative. I have learnt not to dislike them because of this, because I know they come from backgrounds and life experiences where they were raised with different teachings and thoughts of mental health. Yes, sometimes I do wish they would put in the effort to understand, but that is a losing battle. With my siblings I find it easier to discuss and through the years I have seen their response to certain circumstances be a lot more comforting and understanding. With some people it requires patience and the understanding that it takes time for some to learn and understand how to provide you the best support. I have friends who are empathetic towards my circumstances, learn to understand my mental health and are always prepared to listen to me when I am struggling. They also have their individual mental health circumstances they are dealing with, which allows the whole relationship to be more understanding and empathetic. And because I have that support I am so grateful and content that. Through the years I've also had professional help, which has guided me to deal with certain situations better and understand & deal with my behaviours and thoughts better. Sometimes it's not your family who can be the ones to support you. I know that may be upsetting to think like that, but it is sometimes looking at who else is there. Sometimes it's family, sometimes it's friends, sometimes it's a stranger or someone on an app like this and sometimes it's professional help (and sometimes it's the latter) 💕

Not in the slightest

Not really 😕

My dad does but I don’t think my partner fully understands that it’s a life long condition and they will have to be my carer if we move in together

I don’t think they do fully understand, and I think it’s better this way. They know enough to understand how best to support me, but not more than that where it becomes an unnecessary burden in their well-being.

I feel like no one can understand and no one really knows how bad its been but when it's really bad I'm in denial and when my depression isn't as bad I'm scared to tell them about how bad it can get. They know I'm depressed but not the extent of it all. It's lonely and scary

They're trying. But they really dont get it, mostly because they don't have the same cocktail. I think my mom is the absolute closest, but we still differ within our conditions so she's never gonna get it 100% right.

Really only my stepmom and even then I feel like she's mostly projecting her own experiences with chronic pain. I asked her for knee braces because I think they're pretty bad but she says they aren't bad enough for that and got me a cane instead. Most every is respectful but I get so many questions about my cane and why I'm rarely in class and it's infuriating.

I feel like they don't really understand until they see first-hand what I'm actually going through. For instance, I can't tell my mum I'm feeling depressed; I have to experience the depressive episodes for her to finally get that maybe. JUST MAYBE. I'm not actually doing okay.

Not at all…

No my cousin's and aunts and uncles try to fix me and say that I am overdramatic but my parents and sister always understand 💕💕

I feel like my mom understands my feelings and conditions the most. I know my dad tries but sometimes he just doesn't understand.

It's been 20 since my mother brought me to this world, and no other family member has known me better than she has. She knows me better than I know myself! ❤️ But sometimes, It's not a matter of who knows you, it's a matter of knowing someone else who's been through the same things you're currently going through, or have personally been through. There's a difference in receiving support from many of your loved ones, and finding just one person who, not only gives you support, but becomes your motivation to keep pushing forward in this world, knowing that you aren't physically or mentally dealing with your condition alone anymore 😅❤️

definitely not

Depends on the disorder. Autism - no one in my family is diagnosed but me, but a lot of my family members are... what's "fruity" but for autism instead of being gay? That. My partner is almost definitely autistic and is working on nailing down a diagnosis. ADHD - Two of my siblings have it, so they get the basic gist, executive dysfunction, hyperfixation, the absolute drain on spoons it can be sometimes, but other times they're less undderstanding. I also have friends with ADHD I can speak with who will get me. IIH - NO ONE. My parents use my disorder as an excuse to try and guilt trip me into losing weight. Dieting made me miserable. It made me want to [redacted]. I would LOVE to meet other people with IIH. PLEASE.

Nope. I explain to them that social interaction stresses me out and that's why I become violent and agitated, their solution? Send me to group therapy.

I feel like they don't. My uncle is on meds and sees a psych and all that but I feel what he forgets is not everyone's trauma or life is the same an not everyone handles theirs the same... So I feel like even tho he should understand, he really doesn't. Which sucks cus it's like being hypocritical of someone with like issues as yourself, and he feels like he helps when in reality his steps are his and mine are mine and they are not the same, just simply alike. Bitter sweet cus I wish I did have him to lean on.

Mine do. My wonderful support system is what keeps me going, my boyfriend especially. Everyone who I'm close to is very understanding of my mental illness and tries to help whenever they can. I'm very lucky to have them

Ha! Absolutely not!

definitely not. my family has no clue. they think i’m being dramatic or I have a low pain tolerance.

I feel like some try more than others, but no one really understands. I don’t think anyone ever will though because it’s always so complex and difficult for them to understand sometimes. What I go through I don’t think people fathom is possible sometimes for someone to go through.

No apparently not.

I know they’re trying their best to understand, and with my chronic pain they’re very helpful and do anything they can to make me comfortable and relaxed, but with my autism they do very little to help me out in moments of meltdown or sensory overload and even sometimes tell me to ‘get over it’

Parents have the most understanding, then friends then some other family but even I feel they understand and then suddenly, they don't. I've had friends say my illness reminds them of trauma with their parents, get angry and guilt me when I can't physically help them, doctors gaslit me for 7 years and my sister said I was wasting my life and I'm pathetic when I was bed bound before I was diagnosed, exes have split up with me when I haven't been able to be present due to being in hospital. They just don't understand it because it's hidden but even wheelchair users are misunderstood at times, people really just don't understand till they've walked in your shoes and that's why meeting others like on this app is helpful :) PS. I have ankylosing spondylitis it's a form of arthritis

I feel that the friends in my inner circle do, but I don't feel like my family understands at all.

My friends understand all of them and accept me, i only need to explain the DID to them

I have some friends who don't get it but totally empathize... I know my kids don't understand but they see the pain so they try and help. My parents absolutely do not get it. My husband tries but still is pretty clueless. I feel very alone feeling all of my feelings

My friends do my family doesn’t

No they don't get it at all 😥

Nope. They say it's all in my head

No I am in so much pain. I would never wish this upon anyone😥

No. My cousin has depression but she always ignores what I say and tries to act like she's the only person who can be mentally ill in our family. No one understands me.

Only my best friend because she is going through it too. Everyone else… “you look healthy, I’m sure you’re fine.. it’s probably just mental” 🤮

Not even a little bit

Kind of

Family yes .. husband no😥

My mother is starting to try and understand and i havr one friend who is very considerate and understands as much as she can without experiencing what i do but everyone else in my family and friend group think im lazy and annoying and looking for attention and milking it or being stupid. Its not a nice place to be in but its lovely to have at least 2 people willing to understand and its such a relief and so overwhelming (in a good way) when they actually do seem to understand or accept you cant do certain things (even if you can at other times)

Not really, but at this point anyone who tries to understand is enough for me ❤️

no, it’s difficult for them to understand especially when they say i’m just being lazy but actually it’s because of my adhd

definitely not. i think they so so greatly underestimate how hard it is every day and because i have mostly mental health issues, it’s even harder for them to grasp bc its not like a universal experience such as physical pain

Sadly, no. Amongst my family, I am one of the only ones with such a complex medical background at such a young age. The only other person in my life whom I know has just as many ‘issues’ as me, is my grandmother, which is expected with age. I truly do not think my family + partner understand or could ever comprehend the daily struggles I encounter, nor the overbearing sense of shame that being labelled as disabled at age 18 (that was when I was first written off as disabled by a GP, I am now 21) can bring me on the days I feel severely low. My family are also fairly emotionally closed off, more so there for practical/physical help opposed to emotional support. Which doesn’t help, but I take each day as it comes and have understood I need to be my own support network.

my girlfriend and my close friends definitely do, not so much my family except my mam. the rest of them just cannot grasp the fact that i'm 21 and can barely walk, let alone the mental health stuff

no they just call me lazy but I have a chronic disease

No. Even though my spouse and kids do attempt to understand (or at least they say they do), they don't seem to get that it is causing more emotional trauma to me that they are suddenly extremely unforgiving of my actions despite me not having much control ATM of them. Sommething occurred within me over the summer and long story short I had a 2ish month long blackout. I don't remember anything but a few monents here and there but still no sense of a timeline. Point being they blame me and won't let me forget that I wronged them/hurt them (emotionally) and they had to take care of me. Its like I'm living with semi- strangers and I am some sort of monster.

No. I think my friends just feel bad for me and my family thinks I’m being too dramatic. It feels like no one is listening to what I’m saying and just hopes it’ll go away so they don’t have to say anything to me

Yes bcz we all have something in common lol

I think only a few friends have a good idea, but it's always been their decision to learn more and try to understand to the best of their abilities

NO!!!!!!!!

No, they just dis me all the time more my fam than my friends

No not at all they have no idea they try in their own way to be supportive but end up making me feel worse, I literally have no close friends to talk to at all so end up feeling quite alone

Absolutely not. My friends and family are supportive and would understand but i just feel unable to express and talk about my emotions and struggles. I am very private especially with my family for no reason. It just feels safer that way. Even though there probably is no danger in sharing. I just hate feeling vulnerable about sharing things, even though i know theres no shame and nothing wrong with being vulnerable.

Yes, 100%. I have dyspraxia and autism and no one understands how hard it is for me to do simple things like tie my shoes or walk. It sucks. I try to explain it to people but a lot of them say that I'm either making it up or that I'm using it as an excuse. There are people however that do show empathy and take the time to listen and try to understand my struggles on a daily basis and I'm greatly for that but I feel like unless you have what I have you'll never properly understand it.

Nope

My family finally realizes how bad off I am, after 20 years. Now I am a burden. At least they'll pick me up for Christmas.

No, definitely not.. they always tell me to "get over it" and tell me it's not bad like I say.. sometimes I just think about how they'd feel if they were me.. nobody has the right to judge. You're all amazing and beautiful the way you are!😥❤️

Never my own mom has bipolar like I do and she doesn't know how I feel at all

My mom does, she has a version of spina bifida also like me. I don’t think my other family members understand.

I don't feel that my family understands well. I have been self-employed because my conditions limit my ability to work at a business. However, my family does not want to understand that. I am told often about how I would earn more at a business compared to being self-employed. I am aware of this, I am not able to do much about that so I wish I wasn't constantly reminded. I have already tried to work at a business multiple times. I am doing fine on my own, so I don't know why family are refusing to listen to me about my health

No, they are so annoying and speak over me in 504 and doctors meetings as if I don’t know my own symptoms.

No, my family tells me to suck it up and be happy. If only it were that easy😭

Not at all, except 2. Depression and anxiety are common

yes and no 😥

Absolutely not. I feel so alone

Not at all

No they don't - maybe my sister.

It depends on the person(s), what mood they are in, etc. I feel like mood disorders run in my family, my ex- husband's and my husbands

I believe my husband refuses to understand 😥

I believe some of my family understands some of my issues

Not even a little.

No but the fact that they listen nowadays to even half my words means that they understand enough to not make me mad or disappointed.

I wish they cared enough to try most of the time I have to get throught stuff my own

They try so hard to understand and they support and cheer me up when I'm upset but no I don't think they can fully grasp the consempt of having a chronic illness and that you will have good days and bad days 💔

Nope, but they are super opinionated about my life though.

they don't even try, and even if they did they'd never really be able to empathize with what I go through daily

They try to understand what's going on in my head but it's hard when I barely understand what going on in my head.

No not at all my friends all ways think I’m joking and my mom just doesn’t understand

No especially not with the comments they make about things like my room

what is this friends and family thing you speak of? Sounds unsupportive and stressful.

I find that some family and friends prefer to call me attention seeking rather than actually trying to understand from my perspective. Some don't understand but sit with me and just let me be me. Either way, no they don't understand.

Nope.

My husband and mom get it because they both have fibromyalgia too. They understand the pain. Others don't. I have had partners in the past who didn't understand and that was so hard to deal with.

No one ever has unless they’ve had it. Only then did they relate. I was diagnosed as kid, but that was back when it was a lot less common. I’m 35 now. So I was only on the medication when I was a kid until a few months ago. I tried it a few years back again but it was Adderall . One day I had a massive panic attack. not knowing what it was I thought I was dying. I was on that and caffein so I don’t know if it was the combination or what but I had them everyday all day for two years. They eventually went away but I had to get off any kind of stimulant entirely. Anyway now that I’ve com full circle ⭕️ I still don’t think my family quite understands. But I’m very lucky they are supportive. A lot of people have been pushed away by family because of their conditions.

I don't have friends, and my family doesn't understand at all and just makes my OCD worse, only my fiancée understands but obviously not fully but she does whatever she can to help me, we're long distance though and won't be able to see each other in person again for a while.

Fuck no. They’ll never understand it. My friends care and try to. But they won’t ever fully get it. My family, most of them, don’t even care.

heck no

My family shares a lot of the same issues but i only have them when it’s convenient for them

No I’ve sent articles about my condition and had someone tell me it was too much for them like imagine how we feel

Sometimes, it feels like my mom knows, but sometimes she doesn't give me a break. 😔 😪 😕 💔 😞

no not at all

No. I mean, I think my mum tries to understand but she's not me and I guess will never truly understand. With pain, "oh you're young, you should be going on hikes like your brother" or with my eating disorder and I say like "can I get a takeaway" and she's like "I thought you were trying to lose weight" honey if I want to eat a takeaway and I feel mentally prepared enough to do so, don't go saying those things cuz you're just gonna make me regret it and cause myself to do things I shouldn't do.

No my grandpa keeps suggesting I wear better shoes, eat less, exercise, take ibeprofen, or go to physical therapy for my endometriosis and it is so frustrating

Absolutely not .. my family doesn't care to accept that I'm trans .. so why would I tell them about my struggles. My friends?? I don't know?.. they're supportive tho -

My family and friends seem to, thankfully; I think because they’ve been with me on the diagnosis journey that took me almost 2 years and have witnessed my flares. Other people though, not so much. When people find out I have GI disorders they tend to think I mean IBS (which is super real and valid!!) and don’t understand that I mean chronic gastritis, nausea, and vomiting/dry heaving. Having professors understand and respect my accommodations has been really rough because of this. I feel like most people don’t understand how much chronic nausea takes over your whole life unless they’ve been through it themselves at some point.

No especially the father of my baby. A lot of times I try to explain to him that some of the things he expects are just not realistic because of the pain I live with and that sometimes I'm just not gonna be able to do things. That sometimes my ADHD will get in the way. But no matter how I explain it he doesn't seem to understand.

Absolutely not. I don't even understand it

No, if they understood, my life wouldn't be so stupid hard...,..

No, not at all not even a little. I work 60 hours a week, I’m the breadwinner, and raise our 2.5 year old with very little help from husband and I still get called lazy. It is so heartbreaking. I think I just prioritize things differently as far as what needs to be picked up/cleaned/ etc and when because I have to cater to my chronic fatigue.

No, I don't believe my family does, the fact that whenever my symptoms do show up they always forget that it exists and quite frankly I've given up on trying to get them to understand bc they feel like I'm just making up excuses while it takes so much courage and determination to do what needs to be done and they just don't understand the struggles I face but luckily I have people in my life that gives me encouragement so that I can do it

No, they say they do but they don't

To a certain extent yes, but at times they forget or have no clue the extent of things...

nope, they don’t understand

Absolutely not. Not for lack of trying to explain and educate

No and thats okay

No. Even my mom who has the same conditions doesn't even understand or believe me alot.

My able bodied dad and brother say they know how I feel, but I doubt that 150%. My mom who I has a less severe version of spina bifida than I do, think she has more of an idea.

Nope

No

Some of them do but most of them don't they are always you look fine to me well just because I look fine on the outside doesn't mean on the inside my body isn't screaming at me to run get away from people or to stay in bed people don't see that side of mental health

They have little to no idea. They don't know how my symptoms work. And too often they try to force their solutions onto me

I grew up in a deeply Baptist Christian family, was sent to the deeply Baptist Christian School run by the deeply Baptist Church we all attended. I am... A master at faking it till you make it. They have no idea what I'm going through. Thankfully, for the most part, I have made a lot of good progress in my heart and mind so there's not as much a need to explain it to them. But, I seriously doubt they would understand if I were to try. Their world is ruled by the concept that negative things are either a test of faith from there spiritual figurehead or a direct result of some deficiency in there relationship with their spiritual figurehead. Besides, it's kind of fun being the uncle who is a little... Off.. ROFL

No but then again i dont either. We work together to get through this

100% no (except my husband)

No not at all

No. And no matter how many times I try to explain it, I am called crazy and told that not how it works. Like yes, I get no 'normal' person works that way. I'm not normal ma!

Absolutely not. My family just dials 911 when I start having an episode

No. I honestly don’t think anyone will. Even people with almost the same conditions have a different mix of severities that drastically alters how it feels. I think people can grasp my condition individually but trying to put them all in one experience I think is like trying to comprehend how large our solar system is. We know it but we can’t actually take it all in. I don’t think it’s a bad thing, we all have a different life experience that we can’t fully grasp. Medically I think I’m too wild to relate too lol.

Only my fiance really gets it, they also have some mental illness and they get to see me every day to see what's actually going on. The rest of my family has good intentions but they aren't as good at helping with everything

Luckily, yes. All of my issues are genetic. Mom and dad have my adhd and anxiety, grandmother has my heart and spine, mom has my autism, my little sibling has all my mental stuff. We can all rely on eachother due to all having the same problems

Not at all. Especially my step mom. She’s very much so a pray and a get over it type of person. First of all I’m not even religious and second I don’t HAVE to just ‘get over it’. It hurts. I’m not going to push myself until I can’t move or stand to be around others. Everyone else acknowledges it but I’m young so I just have to be capable of rebounding quickly I guess.

my dad texted me that he would help me with disability paperwork. A few days later I ask him in person when I’m getting the papers and he straight up says “you’re not disabled“ 🤨

Not one bit.

Family; Not unless it immediately benefits them. Friends; Somewhat, they try but it's hard to connect with them sometimes

Ish. They try? But no.

Some of them seem to understand. But the majority do not have a clue and don't seem to want to get one.

Some do, some don’t.

No

Absolutely not. My family has always minimized me and what its like to live with my conditions, its always "Your being dramatc/Sensitive" along with telling me to do things I physically can't do. Its always met with "It's not that hard/your just being lazy" when I barely have useable eyesight. They are also unrealistic when it comes to my tics and think their something I can "just quit"... My friends on the other hand are trying their best to learn and come up with solutions so I'm not mad at them.

Not at all. I’m “too sensitive” “too negative” “need to smile more” “need to just be happy” etc It’s almost as if they honestly want to feel the way I do 😥

No not really the closest family member that can relate to my depression and anxiety is my mom but other than that they don’t know me as well as they think due to my depression making me keeps me from talking with them about it

they didn’t realize until i went to intensive treatment and i think they still have trouble with some of my diagnosis’s