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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
Originally published: March 1, 2017
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