18 Things People With Chronic Illness Want to Post on Facebook, but Don't

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While many Facebook users dash off a status update about their latest vacation or check in at a restaurant without a second thought, people who live with chronic illnesses may be hesitant to share a post about what’s going on in their lives. As Mighty contributor Jennifer Steidl beautifully explained, for many chronically ill people, there’s an internal debate between wanting to share the truth and reach out for support, and knowing your post may generate negative or insensitive comments (or no comments) from friends. As a result, many people with chronic illness choose not to share the reality of their day-to-day lives on Facebook.

To educate healthy people about the challenges their chronically ill friends are really fighting, we asked our Mighty community to share a Facebook post they wanted to write, but didn’t. These honest posts may not be what’s typically shared on Facebook — but if you’re not chronically ill and have a friend who is, this may be what they’re secretly dealing with. Reach out and let them know you support them.

Here’s what the community told us:

1. “Why won’t anyone ask if I’m OK? I see all these people online, but I’m all alone. I feel safe at home but wish someone would reach out and talk to me. I’m afraid to reach out because I don’t want to bother people.”

2. “Just because I plow forward to get things done doesn’t mean I am OK. It takes me three days to recuperate for just one hour of house work and one week to recuperate for just a half a day food shopping.”

3. “Please don’t demean me for having to stay home or cancel plans. I’m trying my best. Sometimes I am in so much pain I want to cry with every breath, but I don’t want to appear weak. Every now and again this comes out as anger, and it’s not intentional nor is it personal. I’m simply trying my best to deal with my illness and still live my daily life the only way I know how.”

4. “Just because I tag myself at various hospitals, doctors surgeries and other clinical appointments doesn’t mean I’m looking for sympathy or attention. You’ll all tag yourselves at the pub, in a restaurant, on holiday or a day out. I don’t get to do those things, and I won’t get better.”

5. “To those who think I need to get out more, you have no idea how difficult taking a shower is for me, let alone wasting my energy on being social. To those of you who have stopped talking to me, I’m sorry you can’t understand just how hard my life is, and although it hurts to lose you, for now I am happy focusing on my family and myself.”

6. “I always wanted to have one of my ‘jobs’ in my ‘About’ section to be ‘fighting for my life-full time’ because writing appeals, making phone calls, picking up meds, managing medication appointments, infusions, and emergency room visits is my full-time job. My actual job takes up less of my life.”

7. “Just because I need a wheelchair to get around because of my illness doesn’t mean I don’t want the same things in life as everyone else. It doesn’t mean I’m a charity case. It doesn’t mean I can’t do things for myself. It doesn’t mean that I’m suddenly an ‘inspiration.’ It doesn’t mean I can’t have fun. It doesn’t mean I don’t need friends. I just want to live my life, without judgments and intolerance.”

8. “Just because I have an illness doesn’t mean I can’t hang out with you. It takes all my energy to get ready/spend time with you, but it doesn’t mean I don’t want to spend time with you.”

9. “[I want to be able] to talk about endometriosis without it sounding ‘gross’ or ‘dirty.’ I wish periods weren’t seen as something we can’t talk about. My uterus is literally broken, and it is an important issue. Endometriosis isn’t just a bad period. I should be allowed to talk about my body and my reproductive organs without people getting offended. Talking about the menstrual cycle shouldn’t be a taboo subject.”

10. “I just wish I could talk about my illness without being told to stop exaggerating or being overly negative, or people saying, ‘Oh I have a bad knee, sore shoulder, sore back, etc.’ Most of them will get better, [but] I won’t [because] chronic pain is my life.”

11. “I know you are trying to be helpful, but please stop suggesting it would be ‘good for me’ to get back ‘into the world’ again…. that socializing, volunteering or working is all I need to do… Stop saying, ‘Of course you will be miserable if you sit at home all day!’…. If being ‘out there’ helped, I would be out there!”

12. “I’m just so tired of being strong all the time. Of saying I’m fine, when really, I’m not. I’m tired, lonely, in pain, and some days… just done. But out of a desire to make someone else feel better, to not make others uncomfortable, I just say I’m fine.”

13. “If you see me on the beach, in a restaurant, horseback riding, attending events, etc., understand it took everything I had that day to do those things and was very proud to participate. However, my illness keeps me from living life to the fullest 95 percent of the time. I choose to celebrate the good and not dwell on daily pain. Do not mistake my good days for being ‘able, cured, getting better,’ etc.”

14. “If you have a friend with a chronic illness, how long has it been since you have texted them? If you have a friend with a chronic illness, how long has it been since you have popped by and said hi… Chronic illness is isolating. Don’t be part of the problem.”

15. “Because I can’t partake in the ‘normal’ college fun (partying, going out, taking major physical risks/challenges), I am not considered one of the ‘fun’ friends, and I have been excluded [by most of the people] I used to call friends… Thanks to my illness, I now know who my true friends are and who’s willing to spend time with me. Though it sucks, I’m thankful for my illness because it helped me reevaluate every aspect of my life.”

16. “Can you see the real me? Through the laughter, jokes and good times, can you see I’m exhausted and faking it a lot of the time? Do you know the energy it takes to ‘look normal?’”

17. “It’s ironic that I have a few hundred ‘friends’ on Facebook, and everyone knows I’m sick to some degree, some more than others, but nobody has asked to come over to my house and hangout or wants to see me… Sometimes, I just want someone to text me to show I’m not forgotten.”

18. “Every day I read posts about how all of you hate walking to work, running in the cold, shopping for hours on end… You’re stuck inside while it rains. That sucks… I’m stuck inside because I’m sick 24/7. My point isn’t to express that I’m sick. My point is that the ones around me need to wake up and take a moment and be thankful for all the great health they still have… be grateful because one day in the snap of your fingers you could lose it all.”

What’s a Facebook post you want to write, but don’t? Share in the comments below.

 18 Things People With Chronic Illness Want to Post on Facebook, but Don't
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My Illness Doesn't Take a Holiday

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I recently celebrated my 20th birthday. The week before, I was extremely excited, and couldn’t wait for the day to arrive. The morning of my day of birth, I woke up with sharp stomach pain, stiff joints, and throbbing pain in my back. When speaking with my mother on the phone that day, she apologized for the fact that I did not feel well on my birthday, saddened by my unfortunate circumstances. I simply replied, “My illness doesn’t take a holiday mom, it doesn’t care that it’s my birthday.”

My simplistic reply illuminates a truth that is understood by thousands of people worldwide. Chronic illness doesn’t care if it’s your birthday and you want to go out and celebrate. It makes no difference if it’s Christmas and you have family functions all day that you need energy for. It doesn’t matter if it’s Thanksgiving and you need the appetite to eat a normal meal. Chronic illness doesn’t take a day off, especially not when you want it to. There have been several times when I’ve had to sit out on holiday activities and things that I want to do because of my illness. There have been multiple days when I wished that my body would simply give me a break for just one day, but
that’s not how illness works.

Illness doesn’t discriminate. It does not suddenly dissipate just because you have a big day ahead, or a lot to accomplish. Illness does what it wants, leaving those affected with minimal control. It runs its own course, and typically you just have to find a way to fight through the storm without letting it overtake you.

For anyone who has loved ones with an illness, try to understand that there are no off days. Some days are better than others, yes. But there isn’t a single day when your illness isn’t looming in the corner, tapping on your shoulder, casting a shadow wherever you go.

Please understand if we’re not always the most enthusiastic on holidays or if we have trouble finding the energy to celebrate special occasions, it’s not because we don’t want to, but rather that we have to celebrate differently. Please be patient with us, we’re doing the best we can with the hand of cards we’ve been dealt.

To those like me who are living with an illness, keep fighting the fight. Push through the hard days, and celebrate on the good days. But most of all, don’t beat yourself up about the fact that you can’t always be 100 percent. I know that holidays and special occasions are a tough time because you want to be at your best and do all that you can, but you have to understand that you can’t always do that. Know your limits and stick to them. Learn to come to terms with the fact that your illness doesn’t take a holiday, and you don’t get a break. But everyday is a new fight, and there are good days and bad days. Do what you can to fight the shadows, especially during the days when everything else takes a day off, but your illness doesn’t.

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

Thinkstock Image By: RuthBlack

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The Energy Metaphor I Find Easier to Explain Than the Spoon Theory

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Quite recently, and for the first time, I got to explain the “spoon theory” to someone. It was oddly funny to me. After all, the circles I now frequent in my little online universe are filled with references to “spoonies,” spoon crafts, spoon jewelry, spoon tattoos…

Actually, it turns out the story of the spoons can be a little hard to relate succinctly. It goes something like this: One day a woman with a chronic illness was eating in a diner with her friend. Her friend asked her what it was really like to live with a chronic illness, and, struggling to find someway to really get this right, the woman collected spoons from the other tables. She then walked her friend through a day, taking away spoons for each activity. The physical removal of a spoon helped her friend realize the real pain of the loss of “normal,” the endless and emotional calculations one who is sick has to make on a day-to-day basis, and the ever-present knowledge that you are sick – its own special isolating misery.

It’s a great analogy and it works especially well if there are real physical objects available. Like spoons.

I was on the phone. It was late. I was recovering from a procedure. The spoon theory is not that intuitive, I discovered. We don’t normally think spoons = energy (at least not outside the world of the chronically ill). We think soup.

Enter the battery theory, which instead compares being chronically ill to being a damaged rechargeable, well, battery. It only partially charges, and that’s all the energy you’ve got. Simple.

Of course, that explanation itself got quickly modified to my favorite, the cell phone theory. It’s similar to the battery theory, but with many more ways to elaborate. Basically, you own a cell phone with a bad battery. It doesn’t matter how long it charges – it’s never quite full. Honestly, it’s hard to predict how much juice you’re going to have when you grab it in the morning. Maybe it’s 83 percent. Maybe it’s only 39 percent. And that’s all you have, so all of a sudden Snapchat and Words With Friends is o-u-t. Maybe you put the phone in battery-saver mode and sacrifice some functionality in favor of longevity, or maybe you burn hard for two hours and are left at the end of the day with a busted radiator, in the rain, and no way to easily call for a tow.

Perhaps you could bring along chargers, but then you’re always hunting for that free outlet at the back of a room. Now imagine it malfunctioning, in and out of airplane mode. The phone is physically in one piece and all the apps are there, but they can’t function. Or how about the stupid thing sometimes just crashes? Boom, black screen, and now it has to reboot. Maybe some wires are loose, so the display flickers and doesn’t adjust properly to changes in light. Possibly some of the software is glitchy, so it can’t process texts or answer a call unless you first open the calculator app. What if you picked up a virus or key logger, and some of that energy is now being eaten by a malignant thing that destroys your phone’s operating system and steals your identity?

Hopefully you can see how easy it is to not only explain the lack of energy, but to tailor it a lot of different conditions. Accessibility aids might be that charging cable. Dysautonomia could be the abrupt crashes or glitchy software. It seems all too easy to match cancers and autoimmune disorders to computer viruses and airplane mode. It’s relatable, too: Many people have fought with a piece of tech that has suddenly stopped working properly.

There are always those people who insist that, even though they’re not ill, they count spoons (or battery percentages). There’s only so many hours in a day and so much energy, after all. Since everyone has experienced a tech glitch – or running low on flatware – it’s sometimes difficult to make someone understand that this is different. This is constant, and there’s no replacing the phone.

It’s all right. You tried to explain. You did your part. When the weather’s cold, butterflies migrate. Leave, and use some of that valuable charge on a new app instead.

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

Thinkstock photo by KristinaJovanovic

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I Did a Chronic Illness Photo Shoot and It Was Awesome

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We see them all the time. People doing photo shoots for their engagement, their new baby, graduation, puppies. Well, my friend is in a photography class and we did a chronic illness photo shoot. It was awesome. Here’s why more people should do them.

First, it’s like the old cliché: a picture is worth a thousand words. You may not ever be able to accurately describe to someone what it is like to live your life with chronic pain or chronic illness, and while pictures really only capture what is visible, it still captures the facial expressions to portray your discomfort and it is a great way to capture your physical hardships.

Second, it’s a great way to show your illness to the photographer (your friend, a family member, etc.). It gives them the chance to see the parts of your day that no one but you ever knows about. For me, we did it about getting up in the morning. A process that any spoonie will tell you takes time. We captured the different phases of sleep, alarm, prepping to actually get up, and a bit of the morning process — particularly taping up my joints in the morning. This is something that no one would ever know I did unless I told you about it because it is hidden under my clothing.

Third, it’s a good way to document your illness. Whether it’s for use at a doctor’s appointment, to tell a story, or just as a pastime, pictures are a great way to document the progress of your illness.

Last, but certainly not least, it is a lot of fun! You get to make the everyday activities, that are ordinarily difficult and unpleasant, a bit more interesting (and not in that semi-sarcastic ‘oh, I didn’t know my knee could pop like that’ kind of way!). In my shoot, the photographer was a friend and my brother and his girlfriend were there, too. It made it a lot of fun because we could laugh and use the more interesting aspects of my illness to entertain us, which is always a nice
change.

woman lying in bed
Sleeping
woman waking up
Alarm
woman preparing to get out of bed
Prepping for actually getting out of bed
woman getting out of bed
Moving to my steps to get out of my high dorm bed safely
woman wrapping joints in tape
Me prepping my taping to keep my joints steady
woman standing up from bed holding onto hand
I am finally getting out of bed, taped up, and holding my brother, Luciano’s, hand for support to keep me steady as I step down from my bed.

I would encourage anyone living with chronic illness to consider a “chronic illness photo shoot” as a way to help them express their struggles. Illness isn’t particularly glamorous and a photo shoot can capture the process of going from chronically ill to invisibly so. This has been the second class project that I have assisted friends with by being their model/subject and I love it every time. It gives me yet another way to spread the word of those who live their lives hiding a part of themselves.

10/10 would recommend.

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Please Don't Tell Me How to Feel About My Chronic Illness

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“Think positive!” ”Be a positive person!” “Look on the bright side, someone else has it worse!” “At least you don’t have (some other illness)!” “It’s not that bad!” If you’re a person with a chronic condition, you’ve invariably heard at least one of these comments, or some variation thereof. They’ve probably been repeated to you way more than once. Well-meaning people may have gifted you with pamphlets or books about positive thinking or shared memes with inspiration porn.

The question: is it helpful? For me, not so much. Ironically, there have been numerous times I’ve felt absolutely fine until I’ve been told to think positive. When people try to tell me how I should be feeling or thinking it leaves me frustrated and disappointed.

“Think positive!” has been thrown at me when I’ve tried to gently clarify that yes, I really am unable, for whatever reason, to go out or take part in some activities. I can think positive until the cows come home, but it won’t change facts. It’s cropped up when I’ve explained that some of my illnesses have the potential to progress to more serious conditions, give me unpleasant complications, and/or shorten my lifespan. Discussing possible outcomes is not expecting or asking for them, and being educated and informed on one’s illnesses and medications shouldn’t be considered morbid or negative. No, not every illness has a cure. Not every illness goes away. Some of them tag along with you for your entire journey on this planet. Some have documented complications, and one needs to be vigilant about monitoring for them. Facts, not fear. In this context, “think positive!” seems to be employed as an all-purpose incantation to bury anything that seems unpleasant, worrisome or out of step with the listener’s expectations.

It sometimes seems that unless you walk around with a perpetual smile like the Joker, never complain, shrug off all the logistical and financial challenges of being sick and declare to the world that by golly, you are positive!, you’re relegated to some mythical Team Negative, and that’s that. You’re told that you are fatalistic. Pessimistic. Looking at the glass half-empty. Not trying to look for hope. Not trying at all. Giving up. So on and so forth, ad nauseam. Being considered negative makes you a persona non grata – there are even memes on social media encouraging everyone to excise “negative people” from their lives or only associate with those who are unfailingly positive.

When, and why, did we start categorizing everyone with such broad, sweeping judgments about their emotions? What about those of us who take great joy in our good days and successes, cry and get angry when we need to do so, and try to accept all our emotions as part of the human condition? What if the glass is half-full or half-empty depending on your situation? That sort of objectivity doesn’t seem to have a place anywhere. You’re either Cheer Bear or Grumpy Bear, a Jedi or a Sith, and there’s no space for any middle ground.

If you ask someone about the “think positive” comments they make, they’ll likely say that they they’re only trying to offer encouragement and support. They might even be extremely hurt or confused as to why their suggestions of positive thinking elicit frustration or irritation. After all, they want their loved one to recover – or at least feel better – and they’re panning for nuggets of hope where they can be found. They also may be trying to soothe themselves by making the argument that things really aren’t as serious as their loved one claims, or that it’s a matter of perspective.

What happens when we’re constantly told to think positive? I think it has a chilling effect. We retreat into our shells and fabricate fiction for our loved ones. We smile and tell them we’re fine when we’re not; we don’t fill them in on what’s truly going on with us; and we certainly don’t let them know when we’re frightened or angry. We don’t trust them to be there for us in the ways we need. They’ve told us what they want to hear and we don’t want any more lectures, so we outwardly toe the line.

Our fake smiles might make other people feel better, but that’s about all they do. They won’t stop our illnesses from hurting us. My lymphocytes don’t particularly care how happy I am; they have their own agenda. As disability activist Stella Young once said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp.”

That, friends, is the crux of it. You can tell us to think positive, but you should know that it’s not going to give us the support or empathy that might actually help us. We don’t need to be told how to think or feel on top of everything else. It’s up to you to decide how you want to interact with us, but whatever you choose will have lasting effects.

“I believe you. I accept what you’re saying. I might need more time to process this, but I hear you. I’m trying to understand your illness and how it’s affecting you. I love you. I’m here for you.” These are the words we need from our loved ones. Not “think positive.”

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Thinkstock photo by Yee kwan Lai

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Trump Uses Joint Address to Congress to Discuss Protections for Pre-Existing Conditions

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In his joint address to Congress, Donald Trump called upon Congress to repeal and replace Obamacare. “Obamacare is collapsing, and we must act decisively to protect all Americans,” Trump said. “Action is not a choice, it is a necessity.”

Trump took his speech as an opportunity to outline what he would like to see from future healthcare legislation including protections for people with pre-existing conditions, bringing down the “high-cost” of drugs and the ability to purchase health insurance across state lines. Trump also called for reforms that “expand choice, increase access, lower costs, and at the same time, provide better healthcare.”

“The way to make health insurance available to everyone is to lower the cost of health insurance, and that is what we will do,” Trump said. No further plans as to how Trump or Congress would lower the cost of insurance were provided.

On Friday, a draft of an Obamacare replacement plan was leaked, which would remove the subsidies and Medicaid expansion put in place by the Obama administration. The draft also detailed high-risk pools to protect people with pre-existing conditions, and limits on tax breaks for employer-sponsored health insurance plans.

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