27 Things People With Invisible Illness Want to Post on Facebook, but Don't

27 Things People With Invisible Illness Want to Post on Facebook, but Don't


When your Facebook news feed is filled with beautiful travel photos, exciting life updates and funny pet videos, it can be intimidating to post something honest and personal about your health. For many of those with chronic and invisible illnesses, deciding whether to post can be a constant source of debate: If you appear happy and healthy, people might think you’re “not that sick,” but if you do “look” sick, people might comment with hurtful judgments or accusations. As a result, some may choose not to talk about their day-to-day reality at all.

To better understand the battles those with invisible illness are fighting on a daily basis, we asked our Mighty community to share a status they want to post on Facebook, but don’t. If you have a loved one with chronic illness, they may be quietly struggling with some of the following. Reach out and let them know you support them.

Here’s what the community shared with us:

1. “There is this tiny, selfish part of me that wants to wish each and every one of you understood the total exhaustion that comes with chronic pain. I wish someone could actually feel what I feel and how the pain becomes the secondary worst thing, that worst is never getting any rest from it. But I would never wish that mental and physical anguish on anyone.”

2. “Just because you see me and I look fine doesn’t mean I’m not going through hell every day. I’m struggling in silence because I don’t want to be a burden or seem like I’m complaining too much.”

3. “I would like to post when I’m finally able to take a shower after weeks of being in too much pain to do so. I would like to be able to express that I’m really not OK, like ever. This is too much and I don’t know how to handle this. I need help. I need someone to really understand.”

4. “Why doesn’t anyone want to talk to me or be my friend anymore? My chronic degenerative neurological disease isn’t contagious… nor is my wheelchair.”

5. “If anyone thinks I prefer being home and alone to working, you couldn’t be further from the truth. I’d happily trade a year of my life for another week of my old life.”

6. “Please don’t judge if you don’t see me doing something you think I should be. You don’t know why I’m not running around and playing with my kid or why I’m not helping my husband carry things.”

7. “Just because I’m smiling in my picture I posted doesn’t mean I’m not hurting. I hide the pain every single day.”

8. “I wish my ‘vacation’ y’all think I go on every few months wasn’t in a hospital bed or confined to my bedroom. My smiles are to keep you from asking questions because I know you simply won’t understand when I try to explain that I’m suffering.”

9. “I want to post every time I don’t feel well, so you can see through the facade I put on. But I also don’t want to sound whiny or be discouraging to other people who are newly diagnosed. And I don’t want people to think I’m incapable either. I feel so split apart just by my emotions dealing with others’ perceptions of me. And then there’s the actual physical, emotional, financial, etc. aspects of my chronic illness…”

10. “My pain levels are at ‘I can’t be dealing with anyone else’s s**t today.'”

 

11. “To my friends and family: I’m secretly envious of your ability to work, have children, live productive lives and of your successes. I feel like I’m stuck on the outside, looking in. Sincerely, me.”

12. “Sometimes I just need you to listen while I vent. I don’t need advice. If it were as simple to ‘fix’ as you’re suggesting, I surely would have done it by now.”

13. “I could really use some help. I’m lonely and even basic tasks are a struggle. I would love some company.”

14. “It’s called an invisible illness for a reason. Just because I don’t have this banner over my head saying, “I have this!” or show symptoms every waking moment doesn’t mean I don’t have it.”

15. “Just because you don’t see me as much as you all used to doesn’t mean I do not exist. It doesn’t mean I don’t care about seeing all of you and laughing and talking like we used to. It just means I hide my chronic pain at home where it’s bearable to me. I choose to keep my pain between me, myself and my doctor. I choose not to burden anyone with something that cannot be understood by mere looks alone. It’s my battle. I did not choose it. It chose me.”

16. “Today was a bad day. I couldn’t get out of bed. Sorry I missed everything, but my health kinda comes first.”

17. “Why is it that people will like, comment on and share a funny video, but when I am trying to share something that spreads awareness about what I am going through (that could actually help other people!), it seems to be ignored?”

18. “I’m not pretending to be sick, I’m pretending to be well. If it seems I am ‘fine’ for most of the day, then I ‘suddenly’ need to lay down… What seemed fine to you was actually a mask I put on so I can be with friends/family to enjoy the time, help out, etc. My mask slipped and I just don’t have any energy to keep it on any longer.”

19. “When I talk about my health issues I’m not trying to ‘one up’ anyone. I’m just trying to talk to someone about it.”

20. “Yes, I’m still tired. Yes, I slept all day yesterday. No, I probably will not be well-rested tomorrow.”

21. “I’m sick. It’s like having the flu 24/7. I hurt. I can’t eat. I ache. I can’t move. Please don’t judge me unless you know how I feel. Unless you’re in my shoes, you have no place to tell me what I should do or how I should feel. Let me fight my battle without your judgment and stress becoming another battle on top of it.”

22. “You say I’m strong and a fighter… Well, the strength is starting to waver. I need more help and support, love and care… I’m tired of constantly having to put on an act to seem normal so you don’t feel awkward or ashamed.”

23. “Warning: flare in progress. Talk to me at your own risk.”

24. “The truth… ‘I feel so sick and sore today.’ I don’t want to post this because I would be saying it almost every day, yet I force myself to put on a brave face and go to work and get as much done as possible. So when people see me from the outside, they wouldn’t be able to tell how much pain I’m in and would think I’m attention-seeking if I posted anything.”

25. “I showered today! Now excuse me while I go recuperate.”

26. “I’m tired of fighting a constant uphill battle. I don’t know how much more of this pain and illness my body can take. I can sense that you’re all tired of hearing about it… Imagine how tired I am living it.”

27. “I am trying as hard as I can.”

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10 Companies Hiring for Jobs You Can Do at Home

1. Aetna

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2. Amazon

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4. Hilton

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5. Humana

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6. Mozilla

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7. Nielsen

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8. Phillips

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10. Xerox

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Most of these businesses are large companies and offer jobs in the U.S. and internationally.

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The Problem With Telling Me My Illnesses Are 'All in My Head'


“It’s all in your head,” people tell me, pushing this notion that if I just “stay positive,” all of my challenges will evaporate and I’ll be happy. While I appreciate the sentiment, illnesses do not work that way, mental or physical. If it were so simple, why would I choose this? Positive attitudes are important, yes, but they are not a cure all. I can’t smile the pain away. I would be smiling incessantly if this were the case, but alas, it is not.

 

There are many days my primary focus is just keeping my head above water. There’s no time to recite a mantra that is supposed to help me feel better; there’s just trying to find enough oxygen among the waves to keep me alive. Not to mention, telling me my pain is “all in my head” invalidates my experiences and feelings. It is a biting, hurtful phrase to hear because for me? This is all-consuming and as real as it can get.

Additionally, yes, some of it is in my head. That does not make it any less real. Even if parts of my illnesses do indeed take place “in my head,” they’re still real. You wouldn’t tell a cancer patient, “It’s all in your body, just get over it!” The same compassion and at least an attempt at understanding should be granted to anyone who is ill.

I do not expect anyone who doesn’t endure this to fully grasp it. I only ask that if you’re a part of my life, you treat my challenges like they matter. Because I would do the same for you. I get migraines frequently, but I wouldn’t belittle you for having a headache just because it’s perhaps not as severe. A headache sucks and so does a migraine.

This is not to insinuate dwelling on an issue will help either, it’s merely to express the importance of validating a person’s struggles. Not everyone will understand or even try to, and those are not the type of people anyone wants in their life, healthy or not.

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Thinkstock photo via amoklv.

Woman in wheelchair indoors.

How I'm Working Towards Acceptance of My Chronic Illness and Mobility Aids


I talk about my disabilities a lot; it’s hard not to when they affect every second of your life. Today, I’m going to zone in on something I struggle hugely with: self-image.

You see, being sick with invisible illness can lead to a very big hit to your self-esteem. To the outside world, you don’t look like you’re struggling. They have no idea of your inner turmoil, of the battle you face every day. It’s easy to look in the mirror and forget you’re sick, even if it’s only for a second. I’d do anything to be as healthy as I look, but soon the mirror starts to crack. You start to see the flaws, the story behind every mark on your body. You know all the hidden meanings behind every curve, and what symptom they each represent. It’s all a part of your story; some things showing what you have beaten, and others which are still dragging you down.

It’s hard. Complicated. A messy combination of looking able-bodied, when your mind and body are falling apart.

It can take a toll on your mental health. If I’m being blunt, becoming sick has made me far more body-conscious than I used to be. Particularly in the last year, it’s been hard to accept the rapid weight gain from upping the anti-depressants I take for my generalized anxiety disorder. The magic blue pills stabilize me, but at what cost? Most of my clothes no longer fit me, so instead I have to decide between keeping them around just in case, or accepting my fate.

Mobility aids completely shatter the mirror. Suddenly, you can no longer pretend you’re “normal.” You must face up to reality. You must accept you’re disabled. Using mobility aids can bring new challenges. Have you tried to do a quick grocery trip on crutches, or coordinate opening a door without dropping your brew or your walking stick?

Buying a mobility aid is an investment into your quality of life. I bought my first mobility aid – a mobility scooter – just over two years ago, and since then I’ve gone through crutches, a walking stick, a manual wheelchair, and now a power wheelchair. They’ve all changed my life in unique ways, but equally every one has come with consequences. People often don’t expect a 23-year-old to need these things. I’ve tried to adjust in my quirky manner, which admittedly results in wacky, colorful designs.

The thing I’ve struggled with the most is the odd glimpse of myself in the mirror. In my head, I still look like the able-bodied gal from four years ago. Adding a bright aid turns me into a completely different person. It’s… confusing. Sometimes I don’t even recognize myself.

I adore my power chair, I do, but for all the freedom it gives me, I might as well be wearing a neon banana costume. I look different from everyone else, and even from myself. While I openly deal with it by being a tad cocky, inside I’m battling my anxiety. I try to own the situation, but it’s not as easy as it sounds. Using a chair means I have more energy and less pain, but it also triggers my self-doubt. Essentially, my inner dialogue is “Mean Girls” by now. If I can’t cope with how I look, how will anyone else be able to? Blah blah blah, you get the picture.

All these things said, I’m working on being better. Self-acceptance plays an important part in recovery. Every time I have a doubt, I try to train myself out of the negativity. Yes, I look different these days. No, it’s not even remotely close to how I thought my life would pan out. I have my bad days, but I’m still alive and kicking.

Follow this journey on Having a Natter With Nikii.

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Photo via Thinkstock.

32 Things People Don't Realize You're Doing Because of Chronic Illness

32 Things People Don't Realize You're Doing Because of Chronic Illness


If you live with a chronic illness, you may find yourself adopting certain routines or behaviors that help you manage your symptoms. Some things might be obvious, like taking your medication, but other habits are more subtle. A casual acquaintance may not recognize that your actions and decisions are all-too-often based upon what’s best for you and your health.

To better understand the ways in which people manage and respond to their conditions, we asked our Mighty community to share things other people don’t realize they’re doing because of their chronic illness. Maybe some of these will sound familiar to you, too.

Here’s what the community shared with us:

1. “Sleeping. A lot. People think I’m lazy. That’s not the case. Everything is just so damn exhausting for me. I took a shower yesterday and I had to take a nap after.”

2. “I automatically say no to any unplanned activity. Firstly, I need time to rest before I do most things. Secondly, leaving the relative safety of my apartment, where I have unlimited access to water, food I can eat, air conditioning, fans, changes of clothes, incontinence supplies, pain relievers and a quiet place to lie down takes a ton of planning and preparation. Even a quick trip to the grocery store can knock me out for a day or two if I haven’t planned rest before.”

3. “I carry my journal around so I can write notes about symptoms, food reactions, etc. so my healthcare team can see them. I am in the process of more diagnoses, so it helps to see the notes I write daily.”

4. “Type as much as I can rather than writing. My hands hurt and holding a pen or pencil doesn’t help. I also only have certain silverware I like to use, because again, the handles don’t hurt my hands.”

5. “Finding a chair or bench and sitting down most of the time instead of standing to converse or interact. I have definitely gotten odd reactions for doing that, whether in a public setting or visiting in someone’s home.”

6. “Wearing clothes that are too big for me because they don’t rub on my skin and joints and cause pain as much as clothes that actually fit me.”

7. “I read the ingredients list on all of the processed foods people offer to share with me to see if it will trigger my migraines. Because I am a health teacher people think I’m reading the nutrition label and judging the food. I’m not.”

8. “I have to move slower or else I’m prone to bumping into things and hurting myself. I am also not very active because of chronic pain and how fatigued I am all the time. When I do choose to do a physical activity, it takes me much longer to recover from it than a normal person. I think people might view me as lazy. But they have no idea I’m inactive because I’m in pain 24/7.”

9. “Popping my shoulders back into place. People think I’m just stretching, but I’m actually trying to fix the fact that my shoulders fall out of socket so often.”

10. “I hardly ever wear makeup anymore. 1. Because it takes so much energy to do. 2. Because if I look healthy and happy, people are less likely to believe that I’m in a lot of pain. If I don’t wear makeup, the dark circles under my eyes and the pained expressions are more visible. People are more gentle and understanding with me if I ‘look sick.’ I love and miss wearing makeup, but I hardly ever wear it since my health got worse.”

11. “I allow people to go up/down stairs in front of me. They hurt me so bad, [and] I don’t want to slow others down.”

12. “Taking so many breaks. Yes, I’m 24, but laundry gets exhausting when you have a bulging disc in your spine, migraines and fibromyalgia. I may take frequent breaks but I need them to be able to get through my full day.”

13. “Isolation. I always feel exhausted and even conversations are overwhelming. It’s easier on my body to stay home and avoid the overstimulation and migraine triggers. Plus, it is hard seeing the disappointment on my friends’ faces because I am not able to do the things I used to do and it’s exhausting attempting to convince them to try to understand.”

14. “Always having something to drink with me because I get dehydrated really easily which adds to my weakness and lands me in the ER.”

15. “When making plans I ask for exactly how much walking will be involved. People think it’s an odd question, but I need to know. I can only go so far.”

16. “I don’t always answer texts or calls the day of because I feel that bad. When I’m out though, I pick up my phone a lot, but it’s to write down something you say or something I think of because if I didn’t, I’d forget because of constant brain fog. This is probably frustrating to people who see, because if I’m notorious for not answering, why do I have my phone on me with them?”

17. “Carrying smell-good stuff with me. I do this because I have a super sensitive sense of smell (my friends say I have a bionic nose – in reality it’s just part of my fibro). If I smell something unpleasant that other people can’t even smell, I can stick my nose in the smell-good item I have to keep myself from vomiting.”

18. “Stand up to transfer from my wheelchair. I can stand, and even walk, despite using my wheelchair everywhere in public, but I’m not strong enough to lift myself in and out of the car, so it’s just easier to stand, despite the looks I get from people.”

19. “I change positions a lot when I am sitting upright. Makes it look like I am fidgeting but really I am just trying to find a less painful position.”

20. “Packing a ton of luggage on the rare occasion I travel anywhere. It’s not that I want to be super high maintenance! But I need different clothing to account for different ways I may be feeling where I’m going. (Will I be running hot or cold? Bloated and unable to wear leggings under my skirt if it’s cold? Will I need to wear my flat sandals or the ones with higher arches for comfort day to day?) And then there’s the medications, not to mention I need my own pillows, a cane [and] a walker now.”

21. “Always walk close to a stable object such as a wall, railing, countertop, etc. in case I feel myself getting lightheaded or shaky.”

22. “Carrying around an ice pack because I have a fever every day.”

23. “I almost never sit ‘like a lady.’ My legs are always propped up somewhere. Even in the car, they are on the dash if I am the passenger. Any other position is just too achy.”

24. “My aversion to talking on the phone. My entire world is wrapped around my health, so much so, for one thing, I don’t know how to hold a “normal” conversation; and the second reason is the fact that my memory and speech pathways have been damaged due the medications my doctor had me on a few years ago. People think I don’t call because I don’t care, but that’s simply not the case.”

25. “I try to avoid going places with friends that involve eating out because I’m limited on what I can eat without getting sick. I also avoid new foods because I’m afraid I will get sick from them. There are days my stomach does fine and other days I’m stuck in bed due to my stomach problems.”

26. “Cancel plans at the last minute. It’s so hard to predict when I’ll feel well enough to go out.”

27. “Sometimes I hide or disappear into my room when we have company. It’s not that I don’t want to socialize, it’s that I’m exhausted from my day, doing all of my medical treatments and I just need to rest.”

28. “I usually take the elevator even if I only need to go up a short staircase. I have such limited energy that I really have to conserve it the best I can. To onlookers it often looks like laziness though.”

29. “I’m loud and I laugh all the time because I know if I don’t do that I’ll start thinking about the pain and want to go crawl back into bed. I do all sorts of things to preoccupy my mind and body off the pain, whether that’s being fidgety or talking your ear off.”

30. “Some people in my life forget my flighty memory is mostly due to my disease, not my inability to pay attention to them.”

31. “Deep breathing when the pain becomes unbearable and I am out somewhere. Taking long, deep breaths helps and I have learned to do it so it appears to be my normal breath.”

32. “This may sound odd, but smiling. I’m not as happy as I pretend I am, but I can act like I am. When I’m in pain, I smile through it. When I’m tired, I smile through it. When I’m nauseous, I smile through it. I smile through as much as I can. It doesn’t make everything simple to deal with, but it makes everything seem a bit better.”

An illustration of an elephant and dog, sitting on a bench, looking at a wall or rain.

When You're Ill and Your Friend Isn't in Your Support System


We expect that the people closest to us will be supportive if we ever need them. Because they love us. That’s part of loving someone, isn’t it?

I think it should be part of loving someone, but, my experience tells me otherwise. My experience tells me life is never that simple. And people don’t live by a rule book of “shoulds.”

Some people can’t be what I need them to be. Can’t be what I desperately wish they could be.

I grew to understand that harsh fact a long time ago.

What I’ve only recently discovered, though, is that it’s not because I’m lacking, or don’t deserve the support. It’s not because I’m too much of this or that. It’s not because I’m chronically ill and am too much to handle. It’s not my fault.

It’s because they have their own issues. It has absolutely nothing to do with me.

It’s like an accident. Let’s say I’m in a little red car. I’m safely driving, I park legally. I stop to gather my belongings. I’m still in the car. Up the road there is a troubled person, a troubled person who I know and love, who is standing on a bridge and struggling with their own pain.

They get upset, raise their hands to the sky, forgetting they were holding a briefcase full of papers. The briefcase falls off the bridge, opens and its contents scatter, causing the cars below to have a large accident. One of those cars veers out of control and hits my parked car, with me in it. Hurts me. I’m not severely injured, but I am hurt. A little bit damaged. And it was someone I love who caused it all. Did they intend it? Was it their goal? No. Does that take away from the fact that their actions and inability to deal with their problems, caused me pain? No.

But, it does prove that it was never about me. The person simply doesn’t have what it takes to take on my struggles because they can barely take on their own.

So, what I need to do, is find a way where it works for both of us, where the potential for more needless hurt is minimized; so that the hurt doesn’t become a constant thing. I can only be hit by a car so many times before I can take no more. The answer of what to do will vary, but the answer about whether I deserved any of the pain in the first place, is a resounding no.

Some people can’t be what I need them to be. That’s a part of life. It’s a painful, emotional thing to acknowledge, but recognizing it has helped me immensely. Taking the blame off of myself has helped me find peace and has helped me have more compassion for the people who have hurt me. They are hurting too.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Mike_Kiev

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