Tired ballet dancer sitting on the wooden floor, with a pink background behind her.

OK, I think I’ve figured out a way to explain chronic pain and it’s bearing on my daily life. Be patient, this is only the third time I’ve explained in these terms.

You, relatively healthy, wake up at a one. You’re alive, maybe something’s achy or not right, but overall, you’re good. Maybe aging issues, tummy troubles, psychological or emotional pains, some joint being out of whack kick you up to a two or three. Still, overall, good. Doesn’t impact your day, and if it does, it’s over in a week, or a month. Then back to a one or two. Standard.

Now, you leave the house. Traffic sucks, your car dies, get to work late, the boss is pissy. You’re having an overall rough and tumble day. Now you’re at a five or six.

Everything is still manageable. So let’s throw in some real life shit. Dad’s not well. The cat died. Car broke and there’s no spare money to fix it. A family member or friend is sick. Root canals. Bad doctor’s appointment. Moving. Divorcing. Financial instability. Relationship issues. Now we’re up to a 10. You’re visibly stressed, not sleeping well, worried, planning, making lists, eating poorly, lining things up, strategizing, gaining or losing weight, pacing, seeking outside help. Maybe you’re pissy, frustrated, overwhelmed, isolating.

Life, with it’s slings and arrows, shows up to the knife fight with a gun. Shit. But you’re still used to functioning at a two, so you can roll with this for awhile.

Now. Imagine you wake up everyday at a five or six. For over 10 years – and that’s not including the surgical recoveries or concussion. Seriously, consider it. Every day, a five or six.

Energy stores are already depleted, just by being alive. Pain is always there. It is a perpetual energy sucker. Add to that the relentlessness of physical therapy, physical care, caution with movement and activities, planning said activities around pain. (Is it worth it? Is dancing worth a week of waking up at a six or seven?) Now add the emotional thoughts:

“Why don’t people ask me to hang?”

“Can I support myself if this gets worse?”

“Oh God, it’s been a bad two weeks, am I fucked?”

“I wish I could do ___ still!”

“If I clean the house, I’ll have to take it easy tomorrow.”

“Sorry I can’t go do that with you like I used to.”

“God do I hate ‘comfortable’ shoes!”

“I should workout more, but it always causes more pain. How do I deal with the two to three months of acclimating to exercise if I can barely tolerate my current level of pain?”

Now add just enough life to kick it up to an seven or eight. Just a common rough and tumble day kicks it up to an seven or eight. So life, with its insistence on things always happening (impermanence), often kicks it up to a 10 or 15.

Dad isn’t well. A beloved has been fighting cancer for two years. Dear friends are walking hard roads. I had a root canal and a CAT scan this month. I helped a friend move (managed, no lifting).

“Do I try stopping this med or that one? Will it help?”

No, that didn’t help. Back on that one, let’s try dropping this one. Ongoing.

Overdid it hiking, OK that’s it for a few days.

Without space to breathe, to come back to, without community support, and loving friends and family… I don’t know where I’d be today.

It’s a little dance I engage in daily. It doesn’t go away. The pain is constant. I can side step it with meditation, hiking, and good, connected, loving fun sex, but it’s waiting for me when I get back. This isn’t pessimism, this is how it is right now. (Don’t get me started on the insidious positivity cult this country has going.)

So. What that means is that I don’t roll with the punches as well as I did before pain. A small thing to you might be the last straw for me. A bad day is a bad day, but when all days have an underlying suck, a bad day is horrible news. I fight to stay centered. I consciously work to recognize small things as small things, and some days, I don’t succeed. My frustration may hit a bit sooner than yours. My stress is already high. But I’m always, almost always, mostly, trying to be a kind and compassionate human being on a planet full of people that are also struggling. I’m trying.

Does that help?

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Thinkstock Image By: master1305

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Chronic pain can manifest in many different ways. For some, the pain is visible, able to be seen in redness or swelling. But for others, the pain is less apparent and can be hidden behind clothing or a smile. Either way, opening up and sharing your experiences with pain can be scary. Posting photos or updates on Facebook can help others stay informed and support you, but it can also open to the door to judgment and hurtful comments. Although we should all feel comfortable being honest on social media about the ups and the downs in our lives, the unfortunate reality is that there is often a pressure to only post about the positives. And for those struggling with the daily battle of chronic illness, this pressure to hide such a big part of your life can ultimately be damaging to your physical and mental health.

There may be stigmas surrounding sharing details of your chronic illness online, but being honest about your day-to-day reality can be beneficial for you as well as those around you. We asked our Mighty community to share photos of them experiencing chronic pain that they want to post on Facebook, but don’t. Let’s shed some light on what it really means to live with chronic pain to increase understanding and start breaking down the stigma against being “real” with your friends online.

 

Here’s what the community shared with us:

1. “I’m in bits as usual. I didn’t upload it because I try to remain positive and don’t want people knowing just how much it hurts sometimes.”

woman holding a stuffed animal and crying

2. “I had a seven-week flare-up… I couldn’t move. The pain was excruciating and [I] felt so depressed.”

woman lying on her bed

3. “On days when the pain is bearable (six out of 10) but the exhaustion rules the day, my dog child and I chill in my chair.”

woman sitting in a chair with her dog

4. “Night after my last surgery, when they finally got my pain under control. I always feel judged when I post a true picture of myself. I posted a couple times the 10 days I was in the hospital, but only two photos.”

man in a hospital bed with an oxygen tube

5. “I had just gotten admitted into the hospital and was trying to stay calm and clear my mind so I didn’t focus on my pain and how fast my heart was beating. I didn’t post it because I didn’t want people to worry or think I wanted attention. There’s a lot of stigma with being open about illness online and I wasn’t confident enough at the time to deal with that, even though I needed support.”

woman meditating in her hospital bed

6. “I never post pictures of my illnesses. It’s hard to explain to people who don’t understand and most days I don’t feel like I owe anyone an explanation. Some days I need a wheelchair to get around and other days I can walk for a mile and be OK.”

woman and her boyfriend smiling at an aquarium

7. “I was at a restaurant with my son. I have RA [rheumatoid arthritis]. The struggle is real to get out and live a normal life. The pain along with the crushing fatigue.”

selfie of a woman smiling

8. “Radiation burns from breast cancer treatment. Didn’t post because I still had not made peace with my post-treatment body and I was ashamed.”

woman's chest after a double mastectomy with burns from radiation treatment

9. “My last 10 minutes of a 20-year career I had to leave early due [to] severe gastroparesis. 100 pounds lighter from pain while trying to eat and unable to get out of bed some days. I went from being a shift supervisor sergeant to deemed not dependable for work.”

man in police uniform

10. “From a recent hospital admission. My pain had gotten particularly bad and I had been up all night vomiting due to inadequate pain relief. I honestly just wanted to give up. I planned to post this picture to show how bad things really were, but ended up sugarcoating things once again and uploaded one with a smile.”

woman crying in bed with a breathing tube in her nose

11. “One year into treatment with prednisone…my lovely moonface after gaining 65+ pounds and barely recognizing myself.”

woman smiling with her partner

12. “Me about to have surgery. I don’t look sick and I’m smiling, so my endometriosis [must] not [be] that serious and [is] probably ‘all in my head.’ You know, even though the medical community determined I needed to go under the knife.”

woman with glasses about to go into surgery

13. “I have endometriosis, adenomyosis, fibroids and cysts. As you can see, I turned the two pictures into a meme. I never shared it. I can’t. See…in the left photo I look perfectly normal. I have zero bloating. This is what I look like every morning. Now, on the right, I am severely bloated. I have what is called ‘Endo Belly.’ In fact, in most clothes I look extremely pregnant. I look like this by the afternoon. [It] makes going out in public with a not pregnant, pregnant-looking belly really uncomfortable for a lot of different reasons.”

side by side photos of a woman's stomach with and without abdominal swelling

14. “These are the shots I have to do once a week. I’ve never posted them online because I’m always afraid that talking about my chronic conditions is viewed as trying to get sympathy. It’s not. I do get the side eye sometimes because my illness is invisible. I appear to be healthy and happy. These shots are what make my days tolerable, but most people don’t know I have to deal with this every week.”

shots of medicine

15. “Trying so hard to get through my work shift (a daily struggle). I have literally called out almost a day each week since I started. Even though I’m down to part-time now, I’m still grateful.”

woman at work wearing a salvation army shirt

16. “This picture was too personal for me to share with everyone; in it, I have a migraine that had been nonstop for three days, my whole body hurts, I have shooting pains in my muscles and aches in my joints, fever, and I can’t even remember what else. Instead of this photo, I posted a photo of my messy kitchen floor, where I had had groceries delivered because I was in too much pain to leave my dark bedroom, and I had just left them on the floor. I was trying to show people what it means to have chronic pain and illness (particularly that things like house chores get left off the to-do list for weeks on end), but I didn’t feel safe enough to show a photo of myself.”

woman in bed with an ice pack on her head and earphones in

17. “The face of a lupus and fibromyalgia fighter…no makeup, haven’t even showered in three days, but trying to care for a disabled mother, a 15-month-old daughter and keep a relationship with [my] hubby. I didn’t post because I know someone will just not understand.”

selfie of a woman's face

18. “My feet. Swollen again to the point where I can barely walk and my feet feel bruised all over. I didn’t post it because people are sick of seeing my feet on their Facebook feeds. They don’t understand it helps me document and show people what I’m dealing with regularly.”

a woman's swollen feet

19. “A pic I sent to my friend asking if my latest heart monitor makes me look fat. I have sickle cell, just had a hysterectomy and excision of endometriosis, and was released recently due to atrial fibrillation.”

woman taking a selfie on snapchat with a heart monitor on her chest

20. “This was an undoubtable 10 (I suffer from cluster headaches). I only took it to see what my eye was doing. Always makes me angry when people insist a 10 can’t be a 10 if you’re still conscious and functioning.”

selfie of a man's face

21. “This was after my total thyroidectomy. I never posted this because this was just one of 20 operations I’ve had. When you get into double digits with the number of surgeries you have from chronic illnesses, people start judging you and acting very uncomfortable.”

woman lifting a bandage to reveal a scar on her neck

22. “This was one of the first photos of me using my supplemental oxygen for my pulmonary fibrosis and scleroderma. Initially, I was embarrassed, which is why I was covering my face. I’ve now grown to appreciate the honesty and vulnerability revealed in the picture.”

woman with purple hair and breathing tubes

22 Photos People With Chronic Pain Want to Post on Facebook, but Don't

I never hope for a day free of pain. How can I hope for something I’ve never experienced? Something I’m not even sure exists? Pain-free is as mythical as a unicorn to me. I don’t know what that looks like, feels like, is like. I have a hard time even imagining that anyone experiences even an hour without pain. A day?! Unfathomable to me.

I didn’t have that moment. That soul crushing, identity changing moment, where all the activities you could do before have suddenly been taken away from you.

In some ways I feel like I’m lucky that I’ve always had pain. My memories don’t include a time that feels like a past life, in a healthier body. I didn’t have anything suddenly rip that away from me.

Pain, for me, isn’t judged by “before pain” and “after pain.” I judge pain by level six pain through level 10 pain. Those are the levels I know. And those levels were hard to put a number to. But, my kidney being obstructed, and shutting down is my level 10, and with chronic kidney stones, I never get too far below that level. So I call my best days level six. Those are the days I hope for.

That is my equivalent to going back to the times when I’ve felt my best.

I did have a specific age, a moment, when my illness and my pain worsened to a consistent eight to 10, mostly level 10, when I was 23 years old. That’s when I got to the point where I could no longer work. But work was always hard for me. I had to take time off on multiple medical leaves while in hospital, after surgeries, and also a long bout with a bad case of mono that I caught in the hospital. But I was a hard worker. I worked my way up in a company while working multiple other jobs. When I was able to work I was more like a constant six to eight with nines and 10s sprinkled in at times. When I became a level 10 on most days, I could no longer work.

So, I had loss. I had an identity crisis. I’m an overachiever. I enjoy doing and learning and being successful. But it was never physically easy for me or pain-free.

And in some ways, I’m grateful for that. My health wasn’t taken away from me in one big moment or over one bad year. I’m used to my limits and had to learn early on that I can have a meaningful life, full of love, no matter how much pain I’m in or how sick I feel.

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Thinkstock Image By: marzacz


I’m awake at 3:00 a.m. Not because I just got back from a party, or because I’m up for a movie marathon with my friends. I’m up because the pain woke me up – again.

I’m up because no matter how hard I tried, I cannot go back to sleep.

I am up because the white noise won’t lull me back to sleep.

 

I am up because I won’t sleep for several hours.

I am up out of my fourth hot shower of the day, because it is the only way I’ve found to make the pain tolerable.

So I will scroll through your Snapchat stories of liquor stores and vacations and get no response to my texts, because most people are sound asleep.

Do not mistake my 3:00 a.m. Instagram likes for a wild night. Your definition of a rough night is much different than mine.

This is why I’m up at 3:00 a.m.

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Thinkstock photo via Photodjo.


It’s just you and I, our perfect party of two. I look at our life, how far we’ve come, and I’m proud of us. Being a single mom, I worry a lot if I’m doing my best for you. Now that I’m a single mom with chronic pain, I worry even more. Especially about how my illness has affected you.

When this all began, you watched me slowly get sick. You saw me get angry and when you’d catch me crying, you were there with tissues and a hug. You noticed our active life come quickly to a halt. You asked why and I had to explain I wasn’t feeling well and my energy was gone. I told you I was a like a cell phone battery and often had to recharge.

 

On the days I missed work, you’d tell our uncle to buy dinner for two. You’re always watching out for me, asking me every day how I’m feeling and how my day was. When I had my two surgeries, we were both scared and cried. Again, you were there with tissues and a hug. Both times I had to leave you with family till I recovered. It broke my heart being away from you. I’m your mama, and when you needed me most to comfort you and give you hugs, I couldn’t be there.

Two years have passed and I’m still not better. Despite everything, we have a good life. Now with limits, I’m doing what I can and trying even harder to be the best mom. Thank you for the vote of confidence and for making me laugh when you tell me “I’m the best mom and I don’t give up even when I feel broken.”

These moments are embedded in my memory, the things we’ve gone through and the continued journey we’re on. Who knows what each day will bring. Please know I will never give up fighting – especially for you. For you are my son, my angel and the one with tissues and hugs.

Please remember that life is hard and doesn’t always go as planned, but you can never give up. As much as I try to protect you, the reality is I can’t. I hope you always stay the loving, caring boy you are. Believe in yourself and be patient and you can get through anything.

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Thinkstock photo via monkeybusinessimages.


After nine years of undiagnosed chronic pain, the label “sacroiliac joint dysfunction” was finally given to the constant ache and regular sharp pain in my lower back and hips. This was very encouraging, not just because I finally had an explanation for my anguish, but because it came with a highly successful treatment option, Prolotherapy. This treatment, which involves regular visits to a specialist for pelvic ligament injections, is painful and leaves me stuck on my couch and hobbling with a cane for a few days afterwards. Although Prolotherapy is by no means enjoyable, the discomfort of the injections is simply an increase in the pain that I already experience.

This temporary acute pain brought with it a surprising new aspect of disability for me: visibility. I had long been accustomed to no one noticing my pain, despite how big it felt to me. Now, though, I was using a cane, a veritable symbol of disability, and clearly struggled with getting around. It’s a strange feeling to be met with sympathetic gazes or shock and concern, when you are used to aching silently in the background. “What’s wrong?” and, “What happened?” they would ask, as if my struggle was something new. After the initial confusion, I found myself bitterly amused by the difference between how I was treated before and after a Prolotherapy session. It seemed comically out of proportion with the difference in my pain.

This is not a criticism of those who noticed or didn’t notice what I was experiencing. Instead, I see it as a reminder of how people with illness or pain receive different reactions based on the obviousness of their condition. It is not about attention, and, frankly, I can do without that part. In fact, avoiding stares and sympathy was the reason that I avoided getting a cane for so long. However, having social support and validation is important and often lacking for those with invisible illnesses.

So, how can you support me and others with pain you can’t see? Simple. Give me the benefit of the doubt if what I say doesn’t seem to match what you see.

Follow this journey on Heidi Raichelle Writes.

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