i hear this. Since middle school or b4 I've felt just that. Asking the world to put me in a coma in 7th grade. 34 now. I finally have some peace with an amazing partner. I hope you find some peace yourself.
exactly and getting told I have pain from nerve pathesyd(Hyperalgesia) when I have legit reasons for pain, the Drs won't look at medical records from last country Iived in,I have pain alot,told oh it's from taking pain relief,live in my body Dr,I know it better than your guesses..I live with it 24/7 š
This is perfectly said! Sometimes I'm glad they don't know what it's like because I don't wish even a fraction of what I feel on them. Plus, I don't want to hurt or worry them by revealing how hard it truly is. You can even potentially face harsh judgement if you tell someone how hard it is because they don't fully believe..BUT then other times..I wish they could just get a small glimpse to see...so they could really understand..then they wouldn't ever question my pain or my actions...or lack thereof of actions I should say.
It's a hard spot to be in. You want them to know you're strong and fighting every day to live..as it makes them feel better if they think you're ok...but..that has consequences. Like when they question why you can't do something when you just did it yesterday or something. Most of the time I try to put all my energy into taking care of my family..which leaves little energy for myself and others.
You want them to understand so you have a safe space to lean..but at the same time...you would be hurting, worrying, or potentially facing judgement from some of you reveal how hard it really is.
A vicious circle...and we're stuck in the middle. I wish there was a solution.
this hit home, everyone just tells me try harder stop giving up and I am trying every second of my life Iām giving it my all but Iām out of energy I have no way to stand back up Iām so tired. My friends are so done with me, I donāt like talking to my parents because they just worry and feel bad I just wish someone could understand I feel like Iām drowning and barely stay a float each day
same honestly and I told my brother I loved him in public but he said all I do is embarras him and ruin his life and then he and my grandma told me if I died tomorrow that no one would feel bad, I actually considered giving up my battle
family can be cruel. People never understand what they don't experience for themselves..thats y were on here for each other, we understand. For me that's a hard thing to even think about because I've fought everyday of this fight by myself. But we r here for u. Never give in to ur battle. It's a thought we have all had to be honest though for one reason or another. We will help in any way we can..u got this.
it is very normal to tell someone you love them in public. It makes me so angry to hear what he and your grandma said, they sound like manipulative assholes
Damn... I'm sorry to hear that, but if I were you I wouldn't bother being around those people if all they do is dis on you and make you feel like giving up. If I were in that situation and didn't stop talking to them I think I'd eventually commit.
this hit hard. You're totally right. Neurotypicals and nondisabled people do not understand how much extra work we have to put in to just staying alive let alone staying functional.
How strong I have to be. So that my husband can cope and deal with my cancer.
When I feel like I can't deal or cope for myself. When I'm the one going through it and in constant pain. And constant Drs appointments
I have stage 3 ckd and Iām so worried I know itās nothing like your worries but I feel for you hope you can clear your thoughts and enjoy your life
Iām so sorry and iām sorry youāre forced to be strong on top of that. You deserve to focus on living right now and itās unfair that you donāt get to do that. I know itās not much, but iām rooting for you so hard from my corner of the world, friend.
I feel this in my soul. Battling brain cancer with 4 kids, a career and being a wife. Itās exhausting. And no one seems to get it because I look ok and push myself beyond my limits because if I donāt nothing gets done.
The fact that taking medication- of any kind- longterm is not easy. Needing medicine can feel like a burden. There is a huge mental barrier that you have to get past in order to be able to take medicine everyday without resenting your body for needing it.
YES I have this fear of medications that has made me procrastinate accepting themā¦ when I first had just two pills a day it made me feel old and I was 18ā¦ Some nights I fall asleep staring at the pills putting off taking them š«£
you can look for Holistic remedies verses Western medicine. Consult with a DO or a Holistic Practitioner for alternatives. Canāt hurt to gain more knowledge of Nature around us!
I get your point of view. It can be more depressing without help. Make sure you are sharing your feelings with someone (medical professional out close friend) remember- you met every challenge so far, you are a warrior!
Not being able to do their day to day without being in constant discomfort weather it be caused by internal or external situations. Some people in the world act as if dissability is some sort of "privilage" or "excuse" and that really bothers me because people take their good health for granted more often than not. I'd happily take what is concidered a minor inconvenience over constant pain/discomfort any day if I had the choice. I'm always jelouse of people who are able boddied/NT. They will never understand that ammount of envey.
I get jealous of people that don't have my invisible illness (chronic pain) that I do 24/7. People that can run, and exercise and aren't limited by their bodies. I am so jealous of them sometimes.
I see when my friends/family/relationships get tired of having to take me to the ER or that I have a ton of doctors appointments. It makes me feel even worse than I already do.
Most people can't understand. That doesn't mean that we're abnormal, unlucky, or crazy. It's their problem. They are either narrow minded or clueless. Usually it's clueless. Remember that they are the ones with the shortcoming.
How much pain Iām in and how exhausting it is just to do normal everyday stuff. Iām not faking being sick. Iām faking being well. And itās getting harder to do.
I hate that my parents donāt understand mental health problems when they clearly have some themselves. They donāt get that Iāve been given everything they have to deal with and more. They think Iāve done well in the past coping with everything but the fact is that Iāve always felt like this, Iāve just been better at hiding how hard it is so that they donāt have to be in pain for me. So now that I am lacking the will to hide it they think I just need to get up and do more in order to āfeel normalā again. Unfortunately I donāt think thereās such thing as normal. Maybe we werenāt meant to be normal. But then how do we live?
I can relate 100%, I lost my mother to cancer when I was 12 turning 13 and my dad was physically and verbally abusive even when she was alive. Living with him without her as my protector was the worst part of my life so far.... Luckily I have moved out of his house but I still don't think he knows how much he has damaged me. When my mum died I felt like I had to be the strong one and comfort him even though I was still pretty afraid of him. Our relationship now is still very confusing but better. I understand that he is just a person and he isn't perfect but I could never imagine treating my child like he has treated me... (I don't have children yet but I'm planning on having some in the future :))
I really really deeply felt thisā¦ god, this is me on the dailyā¦ youāre not alone, Iām here with you in this exhausting, endlessly depressing boat
Is so dificult to deal with pain and stilll go to work and deal with co workers and lisent to the stupet coment and have no hard filings for oders god help me
Dealing with daily pain, muscle spasms, numbness, tingling, etc, stuff that would make others not even be able to move. But dealing with it without medication and not letting on that I'm even in pain.
- I have had a few different doctors laugh/scoff at me when I was asked āWhere are you in pain?ā & I answered that itās literally everywhere, & that āIt would be easier to tell you where Iām NOT in pain,ā but then I couldnāt identify anywhere! Ummm, so I guess my hair & fingernails donāt hurtā¦?!? Ugh!! So frustrating. š
That I'm trying as much as I can and even when I say I'm fine I'm not really fine right now. I'm trying my hardest but whenever I try and talk to someone it's almost as if they are trying to compare theirs to mine and they have to have it worse. I don't even think my stepmom or dad have even realized I haven't eaten since Monday..
How I can be "normal" or "productive" one day, or for a week, and then bedridden the next. That I don't have a choice in how my body feels any given day. That I don't want to have enough co-morbities stemming from a/a few genes that went wrong to take down someone less determined. That I didn't ask for any of this.
That I want to live alone but actually hate being alone. :,D I want to have a huge house to myself and be on my own with independence, but I hate being alone or doing anything alone. Itās a super weird feeling, itās hard to really put into words.
Its hard for me to process things sometimes. I feel a wall between me and the physical world at times. Its like someone throwing a ball at you and you catch it for a second but it slips out of your hand and bounces further away
iām appearing happy, but truthfully, my brain is telling me iām not worth sh** every second of the day. that iām fake. that iām not really who I say I am. that this front is what makes people walk away. that everything is wrong w me. iām drowning, but sure, iāll give you a boost out the water.
Wow, I deeply related to thisā¦ Iām so so sorry youāre in this much pain, and Iām sorry you have to go through this because I wouldnāt wish this pain on anyoneā¦ I want you to know you arenāt alone, Iām right there with you
How tired I am of being alive. To the point where I feel like my good days are a lie and I simply do not want to do this anymore 95% of the time, but I act like I do so they donāt have to feel bad
How hurtful it is when the doctors tell me that my condition doesn't usually cause the level of pain I describe I'm in and that they see no reason I should be in a wheelchair. That fibromyalgia amplifies my pain levels and is the only reason I think I'm in as much pain as I say I'm in.
Thank goodness my pain isn't supposed to be as high as it feels, I was starting to think maybe just maybe an MRI with contrast shot into my hip joint would reveal enough evidence as to why I'm in this much pain but I guess not...second opinion here I come, third opinion...hmm who knows 9th opinion maybe it will take to convince these power tripping doctors that get it finally that maybe she is actually in this much pain for an actual reason and is not an addict so not a drug and alcohol problem no it's a PAIN problem!
My saying I want to die etc is because of the pain and you putting me in the psych unit where they cannot treat said pain of course I'm never getting out of there because my pain levels are so far past capable tolerance it's unreal. I don't want to die...but I also don't want to be in pain...and since y'all think I'm an addict...what other options do I have out here? Pot works wonders if the right strand is obtained...sorry not sorry.
Over a month to get out of my system and y'all want me off, ok so 12 hrs after quitting I'm ready to die cuz it's just THAT uncomfortable level of pain...so I guess I'm stuck. Guess I leave my family and move states maybe the doctors there will look past my only vise and help me
hey I don't have much advice, (I have chronic pain, but not fibromylgia), but I do know Lady Gaga has fibromylgia. Try to look into what she does to help with her pain, and see if it provides any relief.
They don't get that we didn't decide one day to try out our mental disorders from a menu on a board and keep them.
Just choose happiness? Why on earth didn't I think of that?!
I choose to be defeated by major depression with psychosis, anxiety/panic disorder, PTSD, ADHD, borderline personality disorder with fibromyalgia as the cherry on top š
I choose not to do anything it's not lack of motivation at all, no, I'm lazy yep.
how hopeless it sounds when they tell me i cant heal from my disorder. i refuse to believe that. i believe i can find the path to the life that heals me and improves my health. i dont want to believe that i cannot get better. i wont.
That my pain is not ānormalā
That I have value which is not attached to my ability to do things
That Iāve ALWAYS shown the executive dysfunction of someone whoās āgetting oldā
That my immense talent does not correlate to the ability to keep a job š«
That there is an answer it's just there's lots of people who have made the Answer look horrible when in reality the Answer is amazing, my life is proof of it. There is a light at the end of the tunnel and it's not will I make it it's when.
Having to come to the realization I will never be able to be independent. I will always have to rely on someone to help me and help take care of me. PCOS has been such a burden. People don't understand wanting so badly to work a full time job and have an income for myself and when I can't, how much that takes away from who I think I should be. It affects myself image WAY more than my weight or anything else honestly. I've kind of put my identity in being able to be MYSELF (being totally independent) and I just feel at a loss. People don't understand the want to be able to just get out of bed in the morning without feeling like you've been on a 6 month binger.. the pain is real and all I want is for it to go away!
How difficult it is when a Dr doesn't take you seriously. Like I've been having heart problems for months and it got so bad today i had to go to the er i was sent by my Dr and when i got there they just gave me anxiety meds and refused to do the blood work my Dr requested because it needs done.
I want hello for my illness but we probably donāt have money to cover the surgery and Iām way too nervous to go to the doctor. Itās gettting totes idk what to do Iāve been dealing with this for years and itās ruining my life
That some people just *CAN'T* do things like everyone else. Albeit mental or physical, either just at that point in their lives or always. Just because you can do something or know someone who eventually could, don't press that on everyone you meet. Support and encourage but don't pressure and force.
How energy consuming being depressed and having social anxiety/anxiety is but also being high functioning with it. Like people donāt understand that everytime I leave my house I have to put on a happy persona how much energy that takes from you. Like Iām working two jobs and in grad school full time, I did this last semester and was burnt out by the end of the semester to the extent I literally couldnāt do anything by the time I was done. I took a month off from work and it took around 3 more months to heal from that. Now Iām only 3 weeks into this school semester and working two jobs and I already feel myself burning out. & my dad just thinks Iām just being lazy by wanting to quit my job and focus on school. and I understand why they see it that way because itās so hard to even understand myself why it happens. Like I need time, EVEN A DAY, to breathe because it is so overwhelming.
that some days, i am one motion away from giving up. that the past looks so inviting. that i don't try to upset you, i actually try to do the opposite.
That even though I can have good days doesn't mean it's always good or that I actually experienced trauma and that I'm not just "making it up" or "it's not that bad"
how quick and how much my feelings change. how i need to change with my feelings. i cant always be flexible and i try to be but sometimes i feel like they move abnormally slow and linger at places just for no reason but to feel like they spent enough time somewhere to make their trip worth it
Everything, I don't want to do anything ever and it's really hard for me to actually do things and if I don't do it to their 'standards' then I get yelled at so
That I'm not being rude when I don't respond but my brain is running through every possible outcome of how I word what I say and if it will come out offensive or hurtful or selfish and I'm trying to get it right... And by the time I do the conversation had moved on.
The fact that I cannot control or even comprehend my emotions. Everything is such extremes all the times for the smallest of reasons. I do not want to be an angry person but I cannot help it because everything is so overwhelming that it's the only way it comes out.
Im too self aware for counseling to help me. It always ends up the same, all they do is just agree with me but it still doesnt fix the problem. Like i know what and how but i just cant fix it its so hard to explain
- Iāve literally had over a dozen different doctors, therapists, psychiatrists & other practitioners over the years tell me that I was as smart/smarter than them & that Iām the most self-aware (4 whatever condition or illness sufferer) & intelligent person that they have ever metā¦! And, these were just those who were willing to admit it, & didnāt allow their ego to get offended that I know so very much about my own issues!! Some docs will actually get offended, & have dismissed me as a patient!! So, I understand your problem. It sucks to be so smart that no one (is either willing to &/or) knows how to help youā¦! :-/
That I canāt please him how he wants and how often he wants. It kills me inside and makes me feel broken. Chromic pain is one of the invisible illnesses that people donāt talk about enough.
The hallucinations and delusions. That I have no control over episodes. That it is an every second of every day thing. That I don't tell them everything because I don't want to worry them.
They don't get how much of a battle I have to face every day. That I have to make a conscious decision to continue to work on myself despite how much I want to lay in bed and fade away.
how difficult it is to function with anxiety: my head starts pounding, i cant think, my entire body goes numb, my chest and heart start hurting immensely. It wont be fixed by telling me to ācalm downā
How much it hurts to try so hard to motivate yourself and improve although you are more than capable and have done it before but your subconscious prevents you from doing so due to fear of being judged abd being told you did nothing when in reality you did grow but others don't care or don't see it or they do but they put you down anyways
That I don't just hate working. That I'm not just lazy and not trying hard enough. That the reason I'm not throwing applications everywhere is because I could generate good work for maybe a week before a symptom flare sent me to the hospital and lost me the job, and I can't handle that happening AGAIN.
CW: weight loss/dieting mention
What my parents don't get is that YES, my disorder CAN go away with weight loss but weight loss is INSANELY HARD and we are faced with LATE STAGE CAPITALISM and DOOM and I'd rather die having eaten sugary things than been a doggone ascetic my whole life for a SHOT at getting rid of my IIH
How much physical pain is causing me to become severely depressed and hopeless. It's the your lazy or you know u can do this to lose weight...it makes me cringe and wince.
I wake up every day wishing I didnāt. My first thought is a flash of emotions that I even opened my eyes. I go to sleep hoping I wonāt. I donāt actively try to die but Iām sad everytime I realize Iām still here. It takes so much just to fake being a person let alone appear normal and functioning.
Everyday isn't the same Just because a healthy person can get their to do list done everyday dosnt mean a person in pain with daily body issues can follow suit It's literally exhausting
It's so true, it's hard to just exist for a lot of us. My boyfriend is very generous, and he makes plans for us every weekend. We're either going to a concert, a comedy show, a play, or another form of entertainment 2-4 times a weekend. I'm very lucky and I'm not complaining, but sometimes it's hard to physically keep up. And since event tickets are non-refundable I feel compelled to go and pay later (physically).
How much pain I'm in... On the outside they see the smiles but the inside they can't see the catastrophes. On the outside I look all right on the inside I'm feeling drained exhausted
I understand that what Iām thinking isnāt real or actually happening, but it feels real and Iām going to react to it as though it is real on the small chance that it might be.
I wish people understood that they're not perfect either. That quite possibly their problem in which we can't see, might just be worse than the problems of someone whose you can.
The effort to leave my bed, the effort to do simple everyday things, the effort to be present with others, it's just completely exhausting and gets harder everyday.
I absolutely hate those people who don't believe mental illnesses exist. Especially when they ridicule you for "how you should be more productive" and "your just using it as an excuse to be lazy all the time
How hard it is for me to "get over it" or "ask for help". Or, better yet, when they tell me that "Oh I don't see what the problem is"
I'm trying, I swear, but- I can't do this everyday-
How exhausting it is to be a humanā¦ I have to be okay and act like Iām okay when really all I want to do is scream and hide away. Itās so tiring to keep it together.
Exactly how it hurts all the time and whatās going on in my head but I have become such a good actor . That I donāt let many people see that part of me . I donāt let them know the constant pain Iām in or the racing thoughts in my head or the anxiety and panic in my head.
Everyday hurts to some extent wether it be manageable or unmanageable. The guilt that goes along with not feeling like a normal person is so deep. That you want to do so much more than you body is capable of but due to chronic Illness you canātā¦ the list goes on and on
sadly I can understand this. On a good day I seem normal and perky. I like that me and wish I could be her all the time. On bad days I'm moving around like an old woman wishing for a break in pain and just trying to figure out the basics. With fall and winter weather the bad outweigh the good, joy. Which is sad but at least I know what to expect if other people don't. But I know just gotta keep chugging away like the little engine that could.
They don't get how exhausting it is to get through the day. To fight and see barely any results. To see friends and family disappear because your to much to handle.
That I'm still young and figuring stuff out. Getting good grades in school doesn't guarantee my success and doesn't mean I have everything figured out. I'm just trying to enjoy my life while I can and when I can. Tommorow isn't promised and I'm taking it slow but I'm determined to have a good time.
I'm going to the doctor bc I don't feel normal or "ok" so testing me & telling me that everything is "fine" doesn't help. I came to the doctor for help...
How I see and understand the world. It seems like I live in a very different world than almost everyone I've ever talked to. I feel so alienated. I don't understand the world that everyone I talk to describes. And it is so freaking hard and hurts
They don't understand that due to years of not being diagnosed and helped I now can't tell if I am trying my hardest or not.
So now I feel like a failure unless I'm basically committing self harm by working too hard
How much I just want to be "normal" (functional, not in pain, mentally and emotionally stable, productive, have normal executive function, not be sick or in pain)
I'm not trying to be difficult, I'm having a difficult time.
I wasn't able to read between the lines and took you seriously, i wasn't trying to stir up drama.
I'm not being dramatic and exaggerating my experiences, i have heightened emotions.
I'm not trying to be so heavy, my life has been heavy for me.
I'm not trying to be annoying or disrespect boundaries when I ask for clarity when someone needs space, I just need detailed and consistent communication.
That I can't just ignore my mental and physical pain and get any job. I've tried to just push through and have ended in the mental hospital and ER so many times.
this canāt be real, right? Other people canāt feel this exhausted all the time and still do ALL THE THINGS. How are they doing it and we arenāt? I donāt know what it feels like to have energy anymore.
That none of it is for attention, all of it is real, and when I attribute thoughts, feelings, or actions to past trauma, Iām not playing the victim, itās just my reality
That I can't live if no one taught me how to live as an adult, just complain what is wrong with me. No one wants to be with a low vib they say.. like this they killing ppl.. They don't get how it is to be sucidal.. To be all alone ALL ur life, just being used. Trying hold on to ppl just to feel horrible pain physically and emotionally.. I could ramble forever..
Im allowed to feel emotions without people automatically assuming itās my bipolar disorder acting up again. Itās like I canāt feel anything anymore without my mom automatically assuming the worst
How I really am alive because I donāt want to hurt anyone. Iām always very close to not being here anymore, and the hardest thing is to keep going. Itās so painful to be here. I have things that make me happy, yes, but my depression and anxiety get in the way so much. My PTSD and childhood trauma effect my life too much too. I get paralyzed by all of this and it makes me feel like a failure a lot of the time. I still work full time, but barely feel like i can get through it most of the time if I donāt have a constant distraction for my brain to shut up. I am constantly fighting with myself and my demons. Itās all just a constant war Inside of me. I have family that see me as less than because of my gender identity and sexuality.. and that just makes living even harder.
Just how painful it is to eat and why I only eat one meal a day. My mom finds every chance she can go criticize me, ridicule me and say how unhealthy I'am for *starving* myself. But it is an excruciating process for me to eat food and deal with the aftermath. I only want to deal with it once, not three times a day. Plus the 1 meal versus 3 has actually worked out great for me health wise in other aspects. 3 meals just aren't for everyone. Still though, she tries to force and push food on me like I can't think for myself. No I don't have an E.D. but I would if I listened to her as she'd be shoving copious amounts of food down my throat just so she didn't have to eat the over indulgence she wants to cook.
How difficult it is to be a 3 sport athlete with depression. Like, everyone thinks I'm doing ok simply because I'm fit and I smile a lot but under it all I'm just trying to be able to wake up every morning and get through the day so I can come home and sleep more
That I know I "could" do so much better, if I wasn't sick. But I am, and I can't *stop* being sick. It's not my fault it takes me longer to do things, I cannot help it. I wish I could.
Just how much energy it takes to exist or how much it takes keep going when you've been suffering your entire life especially if you've got multiple illnesses
That I get told I couldn't have gone through or can't be going through everything I've told them or that they see. I can't just be normal, my chronic pain, migraines and mental issues and past abuse make it so difficult.
When I turn down invites to hang out with coworkers. It's not personal! I genuinely have trouble socializing, and it's a boundary to not hang out with coworkers outside of the office. I already spend 40hrs a week with them!
I feel like people around me donāt get me. Iāve lived without them for 21 years, and I feel like absolutely no one gets me. I find it extremely difficult to find a friend that completely understands the situations that I go through. Once I find that friend, I would eventually want it to turn into a relationship, if that ever happens.
How much time energy and money is spent on things to deal with our conditions like medical bills prescriptions navigating the healthcare system scheduling appointments seeking out pain relief etc.
I could probably buy a house if I didnāt have so many medical bills
That im anxious to eat and leave my house and that i cant just power through it sometimes. Arfid and agarophobia seriously harm my everyday life. I cant even go to school anymore without panicking and im told to suck it up. And that im being overdramatic. I need to calm the fuck down..
That Iām not just lazy or trying to āwork the systemā and how much depression and anxiety affect my ability to function. Also that small things can trigger me and Iām not just overreacting and itās not something I can control yet.
Living as they do dors NOT cure my depression or ease it in any way. The only way to happiness is to have a safe place to authentically be myself. I don't need to show all of me to everyone but home HAS to be a safe place to be myself. I can coexist with almost anyone who isn't telling me to me different but I really need friends. Isolating me puts this shy extrovert into a deficiency state that is literally painful and causes me to br reactive, desperately trying to find a group of people to chill with. Brooklyn can confirm that I am not noise sensitive.
How if a "normal" person had my symptoms for a week, they'd probably do the bare minimum and rest, yet because I have them all the time for the rest of my life, I have to act like normal and as if nothing's wrong. I find this so unfair.
How much I struggle to do what they do as a norm, and how much I miss the connection to the Otherworlds which I have never got with the conventional realities.
They donāt understand what itās like living with an autoimmune disease at all they donāt get it when I say Iām fatigued they canāt understand and they never will unless they go through it too
Iāve been in hospital 3 times because of my flare ups and still people in my personal life make comments that show they donāt understand and canāt
The Alike Team
270d
What don't they get?
182
473
Share
Chronic Generalized pain
Generalized pain
Depression
Abdominal Distention
Paresthesia of skin
Lethargy
Anxiety (Including GAD)
acute lethargy
Feeling of choking
Dyspnea
Headache
Drowsiness
Anemia
Migraine
Spasms of muscles
Chronic Yawning
Insulin Glargine
Chronic Restlessness and Agitation
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