The Struggle of Living with a Chronic Illness

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.

Not feeling independent “not feeling your age”

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"

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

Not known the outcome and what the future holds

Loneliness and guilt

Knowing there isn't a cure.

The sudden onset

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

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

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

Knowing it will never get better

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).

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.

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

😥

Wondering what you did to deserve this

Feeling like a burden

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

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

Not being understood or believed

Maintaining a healthy attitude towards myself.

Keeping friends

Feeling like a burden

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.

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)

Acceptance

Not knowing what is going to happen down the line

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.

it quite literally will never get better

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.

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

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

Accepting that its truly lifelong

Living it w/ verbal abuse from clinicians and family.

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”.

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.

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.

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

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

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

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…

Difficulties in relationships. Especially with my spouse.

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!

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! 😕

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

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

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

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.

I hate having to take daily medications.. Frustrating

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

The living part, knowing it wont get better

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

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

Having doctors to understand how your actually feeling and fixing it

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.

Everyday tasks and relationships

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

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.

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

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

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

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.

Trying to stay hopeful when every day is a struggle

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.

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.

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

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.😥

Others forget you have it.

How inconsistent the symptoms can be

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

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.

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.

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

I can certainly relate

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

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

Self acceptance. (Late diagnosis)

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

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.

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

"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.

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.

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

Everything

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.

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

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

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

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

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 __?’

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

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

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

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.

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

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

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

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

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

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

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".

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.

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

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

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

Telling myself that its never going to get better

Nobody wants to believe it’s life long.

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 😔

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

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