BY Anthony Rivas
“On the outside I’m great, but inside, my body is trying to destroy itself.”
1.Chronic pain can include various types of debilitating pain all over your body
“Chronic pain is one second feeling like you’re being stabbed in the back, the next like your bones are poking one of your internal organs, then your brain is getting hit with a hammer, and so on. Sometimes I forget that there’s pain in one area until it’s moved to another part of my body at a different intensity. It’s sharp, then dull, then crushing. It’ll be your skin, then your bones, then your lungs, and it just keeps changing.”
2.And it can completely disrupt your normal functioning.
“When I’m having a particularly bad flare-up and my body is overwhelmed with pain, it’s like my brain starts flipping switches off: my hearing usually goes first, then my ability to feel different temperatures, then my speech and motor skills, then my sight gets blurry. Finally, I pass out.”
3.It’s 100% real, and you shouldn’t say otherwise.
“Please know that when you doubt someone with chronic pain, it can make them doubt themselves. Sometimes I think, ‘Well, if my doctor, friend, or family member is saying that I’m making this up, maybe I am. And that is ridiculous because the pain is strong and real.
4.For some, it hurts 24/7, 365 days a year.
“I feel like the word ‘chronic’ loses its meaning when people are talking about chronic pain. People don’t realize that I literally have a headache every single second of the day. Chronic doesn’t just mean most of the time’
5.And because of that, it skews your view of what a typical pain tolerance looks like.
“Your pain scale shifts when you have chronic pain. When doctors ask what your pain is on a scale of 1-10 (as they recently did when I had an elbow injury), I had to ask, ‘your 1-10 or mine?’
6.It’s more than just physical — it affects your mental health, too.
“I think the hardest part has been being locked in my house all the time and being distanced from my friends. My lack of social interaction is hard and has led me to develop depression, which I think happens a lot with chronic pain.”
7.It does not discriminate by age.
“I’m living with arthritic ankle and hip joints that most doctors have only seen in patients twice my age. It doesn’t care what age you are, or that you’re ‘way too young’ to know what advanced arthritis feels like. I do know, and I struggle with it on a daily basis.”
8.There are ~good~ days and there are bad ones.
“When bad days hit, they don’t discriminate. Sometimes I can drink beer, eat pizza and not work out and I feel fine the next day. Other days I take two hot baths, do yoga, take my (prescribed) pain meds, eat all the good foods and still feel like dying.
9.Unless you’re a doctor, it’s better that you don’t give advice.
“If people could just stop recommending miracle substances in general, that’d be great. Or telling me to work out more. Or suggesting I just need needles in my face or suction cups on my back, or to ‘just relax.’ I’ve heard it all. I’ll, instead, defer to a trained medical professional and my physical therapist.”
10.Many doctors won’t take the pain seriously, or they won’t do enough to treat it.
“It’s hard to have doctors who brush off looking into the issue because it’s just ‘pain,’ without considering how bad it might be. Sure, my MRI or X-ray might not show a problem that day, but it doesn’t mean there’s no problem or no pain. It’s terrible to be told by a doctor that you have a ‘successful knee’ when it still hurts to walk and go up and down stairs.”
11.Surgery and medication don’t always help.
“I’ve had extremely painful periods since high school. The pain got so bad. Five doctors and many years later, I was diagnosed with one of the most severe cases of endometriosis my new doctor has seen. I’ve had had two surgeries in four years and been on medication that’s put me through menopause twice. I still have constant pain every day.”
12.Everything might seem fine, but it’s not.
“It’s hard because everyone says I look fine or I seem healthy. On the outside I’m great, but inside, my body is trying to destroy itself. I’ve gotten really good at hiding my pain and faking smiles but there are days I can’t get out of bed ’til noon.”
13.Flaking on plans is a pretty consistent thing, but it’s not for a lack of trying.
“People forget very quickly that despite your age and the invisibility of symptoms, that doesn’t mean you don’t have it. A lot of life with chronic pain is also living with the disappointment on someone’s face when you have to back out of plans, or leave early to go home because sitting up hurts too much right now.”
14.And you shouldn’t stop trying, either.
“I wish people knew that just because I don’t always have the energy or motivation to socialize doesn’t mean I don’t still want an invitation — just in case I’m having a good day. I can’t ever predict it. And you shouldn’t stop trying to engage with me. I need to feel loved even if I can’t always participate.”
15.Sometimes it’s better to talk about something else.
“I’m 25 and I walk with a cane. Please don’t stop me in the middle of my day to ask me about how I’m feeling. Stopping to acknowledge how much pain I’m in, or just how drained I feel, ruins all the great compartmentalizing I’ve been working on.”
16.Even simple, everyday tasks can be incredibly difficult with chronic pain.
“I have gotten sores before on my shoulders from constant turning over and over during each night because of pain. Simple things like brushing my teeth or bathing are hard, and require extra mental and physical effort. Even lifting myself out of a chair.”
17.It can be hard to hold down a job
“Working a full-time job is taxing on the body, and the pain causes ‘brain fog’ and migraines, which makes it hard to concentrate or retain information. Not to mention the depression and anxiety you get from your nerve endings being out of whack, constantly tolerating the pain.”
18.And sometimes it can make you second-guess your goals.
“My dreams seem unattainable when I’m so physically incapacitated and have a dependency on medication.”
19.It’s not that anyone’s else’s pain isn’t real, but please don’t compare it to chronic pain.
“I have postural orthostatic tachycardia syndrome, and one of my symptoms is a constant headache. It never stops. It’s not that you can’t complain about pain to someone who has chronic pain, but please be respectful of how I’m feeling.”
20.It’s exhausting, even when you’re not really doing anything.
“On the bad days, just existing leaves you feeling drained. Even if you do nothing but lay down and surf the web, you can still feel as tired as if you went out and did stuff all day.”
21.And it makes it difficult to maintain relationships.
“I wish my husband could understand that I’m not lazy, or upset, or just tired if tasks don’t get done or we don’t have sex. I wish he knew that ‘drinking more water’ or trying fad diets won’t magically cure autoimmune diseases or trauma from a car crash.”
22.And finally, it’s not something to joke about.
“I once had a co-worker tell me that I only ‘suffer’ from fibromyalgia when I don’t feel like working. The fact that some people think I’m lying or exaggerating about my pain hurts worse than all the shit I have to deal with on a daily basis.”
23.Your support won’t take the pain away, but it helps.
“It would mean the world if you take time to read up, question, and follow-up with to doctors on MRIs or X-rays or treatments. Being sick is hard and being in the hospital so often is hard. Being alone with it all is hard. Call, text, or send emails. Just let them know they’re not alone.”