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What's the hardest aspect of a 'lifelong' diagnosis?

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GunpowderMilkshake

Not having enough energy for the days and it repeats to the point of frustration and feeling defeated, which contributes to depression.

FS_cookielove

💕

Marjo

how can your choices change this from repeating itself? Find enjoyable daily activities that do not cost money. Love each day in the moment, try to keep your focus in the here and now. This may help reduce the feeling of being overwhelmed. Break chores into smaller parts and do as much as you can tolerate. No matter how much was accomplished you need to feel good about it, it’s good enough!

1wmsho

Not being able to find someone that truly love you.

Ja80

snap

Marjo

this Can feel like a lost cause in your life. When you least expect it someone who is important to you comes along. Attempt to attend your favorite community activities, get yourself out of the house daily. Just breathing fresh air can elevate your mood.

Bre19

this can be difficult especially with so much stigma around a lot of things but I suggest surrounding yourself with good people

willownyx

everyday difficulties like being unable to find a partner or people who understand how daily life can be difficult

FTW

This. Im tired of hearing, "it will be ok." "I can handle it." Eventually, they leave.

teiovex

it’s like living on high alert with your guard up and lowered expectations anytime somebody new comes into your life with whatever intentions they may have. they either use you, leave you, or both. but I hope sometime, somebody does neither. for both of us

jellypeanut

I definitely understand I know the struggle — I felt like that for years & years. Honestly, I think it takes time and your people will come when they’re supposed to. I have a wonderful partner whom I’ve been with for years & they are the most supportive & genuinely care & take care of my well-being/ conditions, emotionally & physically. Sending you good vibes

Billiett

so true people can’t understand and then they also sometimes dismiss it, like just because it’s chronic pain doesn’t mean it gets any less painful

Bre19

felt this deeply

Jigglebean

Having ambitions but not being able to work towards your dreams and goals because of physical exhaustion, pain, and even mental fatigue/block.

faerywyrm

I agree wholeheartedly. Most days I have to choose between eating and cleaning. Living with chronic issues is a physical and mental drain.

Bre19

so true so many people don't understand why I can't

Milkovich

yes it's horrible. I became chronically ill at 21 when I was in medical school. I'm now 32 and haven't worked in years. I never got a degree or a driving license. I have never achieved anything I can be proud of, and due to having a progressive condition,I never will. I was an ambitious and hardworking student growing up,but my illnesses robbed me of my dreams and goals, and I never found anything to replace them with:( Also I'm poor as a result, and never will be anything else unfortunately.

Hatchytt

Knowing that it's never going to "get better" and is more likely to get worse... I'll never have a pain free day again...

FS_cookielove

💕

Marjo

Medical breakthroughs are occurring everyday! We need to hold hope that one day we will again be pain free! look at each new day as a beginning with new possibilities! Find one thing good in your day! It’s easy to become complacent and feel defeated, I live in pain everyday too! Find activities you can manage while resting: Reading, knitting, Movies, Scrap (magazine, cards, ribbon, stamps, markers), Note-booking! Learn new easy 3-4 ingredient recipes, streamline your life by eliminating clutter in your life. If you don’t live the item or it doesn’t make you feel happy when you use or look at it, get rid of it! By having fewer “things” there will be less to clean, eliminating added chores!

Bre19

very true it's very difficult to know and accept this fact

Katharina

That it seems to affect every person in your life in one way or another. And never seeing yourself having an happily ever after.

FS_cookielove

💕

Marjo

live each day in the present, not looking into the future as to what may be. You can’t change the past; it’s dead and gone! You cannot know the Future! But you can make good choices today and live in the moment!

Bre19

its hard but you gotta keep going and take it one day at a time

Izzy94

Being afraid you’ll be taken advantage of, being afraid that IF you have kids one day you’ll pass it on I have - I’m grateful to my bf for being so understanding but when I think about it still scares me Not being taken serious as a woman & Latina w/ my ADHD & anxiety I’m afraid to brushed off again

FS_cookielove

I have been taken advantage of in many ways and it is traumatizing

Bre19

I have been taken advantage of many times its not easy

faerywyrm

Knowing that it just gets worse over time, the hardest part is trying to live day to day. Every time I slip and try to think about the future, even next week, I fall into a bad place.

FS_cookielove

💕

sophieluna

Mourning the 'you' you couldve been

Sagewoman

Or the “you” that you were. I was at the peak of my goals after twenty-five years of hard work. I had to resign and I am now isolated and in pain constantly.

Milkovich

omg yes. If you become chronically ill when you're young, you never even get the chance to find out who you could have been.

Tracks

The word lifelong

FS_cookielove

💕

honeylemon

The fact that no matter how much time has passed, we still grieve our past self

Bre19

I felt this

Ziggy_B

People not understanding I can't just be "fixed" or that everyday tasks are so hard.

Marniemom

Because my condition doesn’t show, people tell me that I look good. I feel like crap most days, and resent that. Also everyone has a fix. A new drug, doctor, vitamins, supplements, so over it. I tend to isolate myself.

Mommaspoondani

Grieving the life you once had.

teiovex

this one hit me.

ARose1

This post hit me hard. I didn’t realize so many others felt the way I do 🙌

FS_cookielove

It seems everyone agrees. Not being able to find someone to spend your life with. For me it's not finding someone in the little time I have left and possibly dying alone in my apartment and no one noticing for months because my bills are automatic.

Kelbelz

so sorry.

avocadocherry

knowing it will never fully go away

Bre19

very true

Helle

Accepting the fact I have to take medication for rest of my life 😢 gets me really down (have underactive thyroid)

Kelbelz

same. Do you eat gluten?

Ash.G

I think the hardest thing about having a lifelong chronic diagnosis is that you feel alone at first and have a hard time finding people who will accept you.

Bre19

true

Student_girl

Feeling like things are never going to get better, or even if they do, knowing they will always get worse again. Knowing I’ll never be normal/healthy

Bre19

true

AstraDragon

Probably the realization that it's with you for life.

Bre19

sadly true

crafty_spoony

Feeling like things will never improve or change, and you'll be stuck in a rut forever. Tbh it makes me wonder whether life is worth living half the time.

Bre19

felt

KiwiBee

Having people who only see you when you’re “ok” and don’t believe you when you’re not

man_of_the_moon

You can't get rid of it and you know you can't. You know that people are going to treat you differently and you can't get rid of it no matter how hard you try.

Bre19

yep

busy_bee

Wondering if I'll ever be able to go of my meds or what kind of impact my medication will have on other parts of my health (liver especially)

Bre19

true

Rizbit

For me it's the diagnosis of insomnia. I've been battling it all my life. Some months are better than others and at times I've found medication that works for a while. But it's reared it's ugly head again and I've gotten less than 4 hours of sleep for the last month and a half. Last 2 nights it was only 2 hours. It makes it hard because then the rest of my physical and mental disorders act up. Which then trends to put me in hospitals. Which sucks 😔

poppyblue

It’s always the hardest to believe that the love others give you is genuine, it’s always in the back of my mind that “when things get bad, they’ll change their mind”

teiovex

I’ve been through this. it’s one of the worst things to experience something you’d convinced yourself was just an anxious thought. but the right people are out there, just know that. for all of us.

BbyBunnny

Knowing that you will have it for the rest of your life and there isn't anything you can do about it, and there's a good chance you'll get get worse over time.

Bre19

yup

starlightnovas

Knowing that you will never be the same as you once were, no matter the strides you make. Knowing you'll more than likely just get worse over the years, sigh

Bre19

so true

JessyP

Knowing it may have further implications and affects on you and those around you

Bre19

true

Len

Knowing there's no escape

Bre19

unfortunately

Wednesday_7

Nobody wants to believe it’s life long.

emmyhope

Telling myself that its never going to get better

Bombus_Flavifrons

The concept of this truly being forever. Like I'll have better and worse days, but I'll always have to be more aware and work harder than everyone around me to get less far.

Bre19

true

Katharina

Not everyone understands. But I have to and be okay with that. Know my balance. But this is MY normal now.

QueenBlueBead68

sometimes even my husband doesn't get it. I've had hashimoto's thyroiditis since before we got married. Unfortunately I've acquired a few more autoimmune disorders since then.

CharlieAlien

Being afraid to go anywhere without lifesaving medication. Even different seasons make it worse.

MagicBunny

For me its finding people who will genuinely try to understand you instead of saying "oh, well, she has that but i love being around her". I just appreciate those who want to learn with me but not many want to learn why someone is the way they are from what i experienced

Typicaldeepgenz

Feeling like giving up becuase what's the point nothing gets better

Bre19

felt this very deeply

Librarianish

💕what really hurts me is that my husband doesn’t take my multiple diagnosis seriously

klazikel

Getting people to understand that I will always be living with my disorder and that it affects my day to day living. I won't get better or recover from it. There is no cure for bipolar disorder, as well as other chronic illnesses. I am dealing with this for the rest of my life. It will continue to impact me every day and likely get worse over time. That's why I don't work and have such a low-key, repetitive life. I know what I can and can't do, I know my abilities and limits.

CrohnsyPoo

Having to explain my diet every time I go out to eat. I like raising awareness, but sometimes I just wish ordering could be easy by pointing to menu and saying "I'll have that please".

Kelso9344

The fact that I will forever get light headed if I get up too fast, my joints will swell and hurt, I will forever have to take up to 12 or 13 pills a day, planing out what foods I should eat to help me out. It's exhausting and I have to keep doing this

poodlelover28

Coming to terms with the fact that things will never be the same and there's no treatment

AriEden

everyone expecting u to go off meds at some point. no I actually would like to stay alive thank u.

teiovex

being expected to be okay the way somebody without a lifelong illness is, and when you can’t, you feel bad for it.

LynnKenzie

It holding you back from being who you want to be and doing what you want to do.

Bre19

The fact that some days I feel too anxious and get everything done and then fall into a depression

Mafuyu

It’s still very hard for me to grasp that it won’t ever just “go away”. Even though I take medicine to manage my symptoms, the sickness won’t ever be cured. It’s a very weird thing to think about.

Gingeralamode

Knowing that you'll have to learn to live with it among your other struggles

Lilidoodles

Not knowing what my body is going to do at any given time or if my current career path will even be feasible for me in the future because of my health

Rotherobin

Long periods of good days can make you feel "normal" again... only to be blindsided by your bad days when they show back up

vuota

having to accept that it doesn’t go away. feelings of grief, and bitter jealousy towards people who are more fortunate than you, even if i shouldn’t be. ‘why was it ME? out of thousands of people, why did i have to be born with __?’

WitchyWoman89

Knowing no matter how hard I try I'll never live a "normal" life. That and the constant "why me?"

ItsErin

Knowing you can't be angry at anyone and that nothing could've prevented it.

N3M0

I wake up angry some days, angry that I'm disabled, angry that I have to deal with this. And I snap at people, they don't deserve it, and I'll apologize for hours, but sometimes I don't even have a reason to snap

SharkBlood23

Knowing the day I won't suffer anymore is the day I die.

catdad22

Cw: s**ci**l ideation . . . . . . . . . It’s extremely hard to have hope for the future, especially as far as any kind of qualify of life or sense of personal fulfillment is concerned. It’s terrifying and makes it extremely hard to keep going.

SecondChance

Everything

Coraciidae

Knowing that I'll never be 100% healthy like some people.

Laellaxe

Knowing that I would be in much better shape if I'd never been traumatized or abused as a child. A traumatizing medical procedure likely caused a pain disorder that is just going to get worse until I die--and there are treatments for it...treatments that would be triggering because they're similar to the original trauma; and chronic stress leads to unhealthily high levels of cortisol being released in the body, which has aged me. I'm 29 and have felt 60+ in my body since I was 10. And it's just going to keep getting worse. I am also apparently the only person left on this planet who truly enjoys working. But I'm in constant pain, can't focus for shit, and dissociate multiple times a day. I have done nothing to deserve this.

Demon

"Your still sick?" I have a cronic illness. Chronically ill am I. My illness is cronic. I experience my illness in a cronic fashion. Chronically I will experience illness. Cronic illness.

MerlinTheWizard

Geting around. I can not for the life of me figure out how to drive or ride a motorcycle.

YourLeftKidney16

I have never met anyone but 1 of my friends who knew what I had before I told them and no one knows what I have.

Something_Strange

I feel too stupid to be an adult and just become independent.. and if I can't do that I don't think I'll ever find love.. I don't think I'll ever be enough for anyone

EliteLexy

Self acceptance. (Late diagnosis)

sevensketch

I have bpd and the hardest part is knowing im like this because of other peoples actions and its up to me to reverse what they did

Marjo

Nothing is set in stone or permanent! I feel our Faith plays a key factor in one’s healing!

Trish1020

I can certainly relate

Evantha

Being able to deal with everyday challenges. It's tough but you must keep going.

UnknownGalaxySystem

That those who don't understand, will label us as crazy and call the police on us. We will be seen as dangerous for our disorder, despite never having harmed anyone.

SapleMyrup

i want to go off my meds one day but I don’t know if that day will ever come. struggling to accept that living as the version of myself without medications is not sustainable. without medications i was unstable and destructive. with medications i can hold a job and a healthy relationship. if i lose access to my medications i’ll lose everything else. most of my life is hinged on managing my illnesses that i’ve had since i was a teenager.

AndromedaSpark

The stigma and barriers to get basic necessities like insurance or housing when autistic

AlwaysTiredPerson

How inconsistent the symptoms can be

Calethea

Others forget you have it.

Starishere831

I might never be able to have kids because I might never have enough normal ovulations to have fertile eggs

lasaaagna

felt this one – I don’t have egg cells because I don’t have ovaries (swyer syndrome/xy gonadal dysgenesis) and I put up a brave front at the time but tbh hearing that even at 14/15 was really hard

survivor_girl96

For me it's many things like knowing I may not be able to live a long time. I may not be able to cure it. I may leave my family behind if the time comes when it comes. I never know and it's scary.😥

Mellow_love

Trying to appease everyone around you while also trying to be yourself and live your life to the fullest

RMSjohns

Having the rug pulled out from under you. Leaving your life behind and learning to cope in a much smaller world. I loved a Covid life long before it came.

curtain

People saying "problems are temporary". No, they're not. This is forever. When I was a teenager, we had this lady come into class to tell us that we shouldn't have sex and that if we get depressed, we should remember that all issues are temporary. I asked her what that means for people with chronic illness, and she said, " You're not old enough to worry about that kind of stuff." She didn't know that I was the kid who was always fainting and dislocating my hips, but she shouldn't have assumed.

McRenn567

Trying to stay hopeful when every day is a struggle

justdoingmybest

Knowing that it will never end and that not everyone has to experience this every day. I don’t wish it on anyone, but for the longest time I just thought that was everyone’s experience.

Kate1985

I’m traumatized by it. An episode may end, but there are residuals. When does it all truly end?

Meeeeeeeeeeeeeee

and knowing that another episode of symptoms is coming, so feeling like you are on a countdown.

Tabatha

I agree it is hard to find someone that understand you and your health.

Student_girl

Knowing I’m always going to have the pain and limitations and fatigue. Feeling like nothing will ever get better

lasaaagna

the long-term impact on your mental state – e.g. never being able to trust yourself to do anything for adhd, or fear of being alone – having swyer syndrome really affected my weight and self-image for a long time (especially before diagnosis) as well as my security in being female – I’ve generally struggled with not knowing what’s going on inside my head or body as well due to lack of resources or communication with doctors about medication or swyer syndrome, etc

lasaaagna

also for autism specifically I find that choosing to unmask is usually a choice that comes with a reduction in social life and friendships – and so my mental health has suffered in some ways because of my past experiences with being alone (and miserable as a result)

lasaaagna

(because I have chosen to continue masking regardless of the added strain because I can’t cope with loneliness)

Butterflame

For me it was realizing it gets worse. I had to wait 2 years to go to the park again. By then I couldn't use it anymore.

kateafranklin

knowing my condition is progressive, meaning my other conditions will progress alongside of it

PickleNew

Everyday tasks and relationships

Kerastine

The hardest aspect for having most of my diagnosis is that I never know what or when something is going to happen. Once one thing goes wrong then everything goes wrong.

LaurenRomero

Having doctors to understand how your actually feeling and fixing it

Diagnostic.Dilemma

People not being able to accept that they’ll probably never understand/relate with me on certain levels and that that’s OKAY, ppl seem to think u can only be friends that you relate with on everything

E.B

I’m with you! I have the same balanced feelings and it’s really hard.

Exterminator

The living part, knowing it wont get better

Mcmeadow

Knowing it's never going to just 'go away' and that I'll have to cope with it forever.

Triple0Tea

I hate having to take daily medications.. Frustrating

SunJoy

Not being able to know who the true you is because of medication, physical limitations, socially, and how it effects your finances, time, and family.

Reb9

Feeling like I’m not a good enough wife or mum.

indie9367

For me that it could kill me one day and there's nothing I can do

Something_Strange

I can't find a lover :< and people like to make autism the butt of every joke and assume I'm stupid

Kadair

Right now my anxiety is so exhausting! I am angry all the time, and it all stems from one person! It isn't fair for my family to see me this way! 😕

StrawberryMilk

I used to think finding love was but then after experiencing more relationships, it gets easier as long as i stay authentic and reject people that dont meet my standards!

EliteLexy

Difficulties in relationships. Especially with my spouse.

serendi

Coming to terms with it, then finding how to work with it (versus around it). Now that I’ve gotten that mostly covered, the eternal issue is other people’s “takes” on what I should/shouldn’t do and whether I even have it…

Karrieanne73

Knowing that I’m never going to be able to do the things I used to do. That this is now my life pain and depression and people that don’t understand and doctor appts and lab work. No energy- just not having enough spoons 🥄… fear of what’s coming next

Igglepiggle

Facing how your life will be a challenge forever and having to learn to live with it without making yourself more sick, it can feel very depressing and disappointing sometimes how my life can’t be normal

Valkar

The slow realization of this will never end, a job won't let me sit down because I'll pass out, I'm just fucked over for the rest of my life

PrettyPolar2

Having bipolar disorder scares me because what if I get stuck without my medication somewhere then I'm virtually useless until I take it again. I also have always been a fix it myself kinda person and certain health problems you can just fix with yoga and a good diet.

ClayBrooks

People forget how it affects you, even those you live with. So when yiu can't do something it can often turn info arguments as they have forgotten how hard it is for you.

sentientmeat

For depression/anxiety: always knowing that the pain/suffering/loneliness will return, knowing that I will always end up back in a rut and sometimes realizing that the down i am in atm might not be the worst one. ADHD: never being able to feel “normal”, feeling odd in neurotypical settings, having family tell me “why don’t you just do ….?” or “why can’t you do ….” or “why can’t you just remember things?” and knowing that they’ll never be able to understand what my mind goes through and often me not knowing what my mind does or why i can’t do “X”.

ScubaSteve

Living it w/ verbal abuse from clinicians and family.

Tini

Accepting that its truly lifelong

TheMoonGoddess420

Dealing with chronic pain all over your body every single day forever. Dealing with chronic fatigue syndrome every single day forever. Trouble making plans ahead of time because you might feel good at the moment. But that can change by the time the plans you made are about to happen. Dealing with family members that don't understand chronic illness because they have never had to live it. The list goes on and on.

Bre19

11mo

that must be difficult

Kadair

Not being able to do activities that I use to do, even trying to lift things have now proven to be difficult!

Bre19

11mo

felt

venus137

The misinterpreted social understanding of your condition, instead of doing research to find out its truth.

Meeeeeeeeeeeeeee

omg yes. And the stupid questions people ask, because society, the media and common misuse of medical terms as conversational misdescriptions has given them false impressions.

Bre19

11mo

so true

Starlightie

The feeling that I'll never be normal and I'll have to live my entire life suffering until the day I die.

Bre19

11mo

true

CozyVibez

Coping! Depression is so difficult to deal with while simultaneously managing chronic issues ❤️

Bre19

11mo

true

carter._.16

Knowing that most people will never truly understand what it feels like to live with what you have And knowing that you'll have to find a way to deal with it for the rest of your life

SecondChance

That in 1000 years it won't matter how much I suffered from it

AimeeB

All of the people here seem to suffer with physical pain, but most of my issues stem from mental anguish. It's difficult to get my life on track when I'm constantly questioning my own worth and abilities. Eventually I just shut down and stopped attempting to do anything worthwhile, like normal tasks around the home, any hobbies which require skill, work and education. All feel impossible to me.

amissundastood

it quite literally will never get better

Meeeeeeeeeeeeeee

Knowing that the old you will never happen again and you are now predisposed to many more problems down the line, so you need to make the most of the good days as it will never become your norm.

Lorely

Not knowing what is going to happen down the line

Grammy6

Acceptance

Shadowcat13

Making sure to have patience with yourself. Some days will be great and some days will suck, you need to remember to treat yourself kindly on the bad days especially when your friends/family are upset because “yesterday you were fine and had fun, why are you acting like a baby today?” Im here to talk if you need (32 years of Stickler Syndrome/joint issues/chronic fatigue)

MystRei

I have been there, done that. I personally set alarms on my phone, and I put in the alarm little chores to do. It helps me, but it is hard to get up and do it. The past few days, I have been cleaning the kitchen. I didn't get all of it clean and wiped down, but the dishes are done. The stove top is wiped down, and my counters are clean. I still have dishes to put away and floors to clean but it can wait.

akm1612

Feeling like a burden

hydroepilepic21

Keeping friends

EliteLexy

Maintaining a healthy attitude towards myself.

JumpingMouse

Not being understood or believed

Bakon

People looking at me and thinking I'm young so I must be healthy. And not taking my health issues seriously because of that

TattySprinkles

People giving dirty looks to a 21 year old needing an electric grocery cart 🤣

Samlovesham

Feeling like a burden

SarahK8

Wondering what you did to deserve this

ErzaS

😥

AuDHDisney

How other people slowly give up caring about you. They allow a few "slip ups" here and there, but as time goes on, people "can't cope" with you anymore, or claim that you blame everything on a chronic condition. So many people expect you to "get better" and get frustrated when you can't

Quillathe

When other people don't understand how badly something is effecting you so they keep saying you'll get through it until you just break so badly they can't push it away anymore but you all suffer for it.

AnxiousPotato02

Trying to explain it to the people who have never had to deal with it before, or who've never actually seen someone deal with it, especially during the days where you just completly break down (getting called psycho all the time by a coworker who doesn't understand my diagnosis).

DaisyMae7

Knowing it will never get better

Deez__Nuts

Knowing its going to limit my choices in life and job opportunities

Igglepiggle

I’m scared I won’t be able to have kids, to raise them well regardless of if I can physically have them, I’m scared I won’t get better enough to work and earn money to look after myself and be healthy let alone look after a partner equally and then have kids and be a good parent but I really want to so it’s heartbreaking to think I might not get any of my life goals because of my illness

kateafranklin

knowing that it’s progressive and can affect ALL of my other conditions.

Kidncatmom

The sudden onset

LexaPeach91

Knowing there isn't a cure.

LunaNova

Loneliness and guilt

Overcomer

Not known the outcome and what the future holds

demonshunt

Knowing too much about my conditions and having to constantly explaining it to new doctors and being worried that it looks like I’m doctor shopping

Kit0907

Knowing that as much as I can try make it easier, every single day will be hard, it may get better from day to day but it'll never feel "good"

Zebrapotato37659

Not feeling independent “not feeling your age”

Beetle444

The medication needed to treat it costs over 20,000 a year for the rest of my life. I will need to plan my life around having good, consistent health insurance coverage.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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What's the hardest aspect of a 'lifelong' diagnosis?