15 Things No One Tells You About Chronic Pain As A 20-Something & Back Pain

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This was originally published on The Mighty, a site that finds the strength, joy and beauty in disability and disease.

1. Sometimes you feel like a lab rat/medical experiment gone awry.

“House M.D.” doesn’t even begin to cover all the weird treatments and experiments you’ve undergone to aid your health. Your “medical team” becomes the people you know and hear from most.

2. The idea of going out and maintaining a normal 20-something social life is laughable.

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Think you’re going out for a few drinks tonight? Oh wait, you can’t because of your specific diet, medications you’re on, etc. Friends may be disappointed. You may be bored (really bored). Netflix will be your bestie, don’t worry.

3. Some people are really open and kind about your chronic pain. Some are just the worst.

Explaining your chronic illness truly becomes an art. You read their body language and take their past experience and personality into consideration before divulging your illness. Then, usually, it’s a game of 21 questions.

4. There are good days and bad days.

Good days and bad days depend on a lot of the perpetuating factors you may have. Some days, I’m good enough to take a day trip to go shopping and other days, showering is a legitimate goal if you can make it out of bed.

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5. You become your own doctor/pharmacist/advocate.

Doctors can make mistakes sometimes. I double-check all of the interactions of my drugs when I’m prescribed new drugs to make sure I’m not going to accidentally kill myself. Do your research. Many of the things that work for me now consisted of a series of trial-and-error combinations of medicine and therapies.

6. With chronic pain comes new and different priorities and limitations.

The way I best describe any given day is that my life is like an iPhone battery, and I’m on energy-saving mode. Everything from cooking, to getting dressed, to going out to eat, to working take a little (or a lot) of battery. Some things I used to love to do are just not worth it anymore.

7. Chronic pain is a full-time job.

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I’m not kidding. If I could show you my calendar, between all my specialists, I have on average about four doctor’s appointments weekly. Half of them are usually out of town — meaning they’re out of state. I also, on a monthly basis, get acupuncture, chiropractic work, Reiki, massage, trigger point injections and see a personal trainer (who specializes in chronic pain) twice a week to weight train. If something pops up out of nowhere and everything needs to be rescheduled, I’m on the phone for sometimes hours rearranging appointments.

8. Certain foods become your best friends.

When my pain was at its worst about a year ago and I had no medication to help my pain, all that could comfort me was mashed potatoes and ice cream. Turns out, mashed potatoes and ice cream are not a cute look for my body and with my physical limitations, cooking healthy food for myself and exercising is much more challenging.

9. Sleep, above all, is key.

Seriously, if I get no sleep the night before, my whole day and body goes to sh**. Getting enough sleep is worth it.

10. Maintaining a love life? LOL.

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I haven’t even begun to crack the chronic pain code on this one. I have no answers here.

11. Get a pain guru.

Having someone close who’s been through the ringer with everything you’re dealing with is so helpful. Anytime I call her frustrated about something, she has five to 10 different solutions I never thought of. My pain guru happens to breed puppies. Speaking of which, puppies are just about the best therapy you can have, so get those, too. Nothing feels better than lying in a pile of puppies.

12. You will have haters.

Send donations in their honor to your favorite chronic pain charity.

13. A few people will be inspired by you, a few people may feel too sad to even be around you and a few people may slit your tires when they see you in handicapped parking with a handicapped tag.

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The tire thing didn’t personally happen to me, but it did happen to someone I know. Don’t forget, just because you can’t see an illness doesn’t mean it’s not there! Don’t be those people.

14. Silver lining: you get to watch every show you ever missed out on and try a lot of hobbies you never thought you’d have time for.

Hobbies I’ve started since medical leave: learning French on Rosetta Stone, writing, flower arranging, pottery, painting/sketching, jewelry design, puppy socializing, volunteering at a pit bull rescue, cooking, baking and reading.

15. Chronic pain has forced me to see the world in a different way. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. Ironically, because of my chronic pain, I am now finally able to do exactly what I always dreamed of.

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18 Memes That Nail What It’s Like to Live With Chronic Illness

Here’s what you sent us: 

1. 

chronic illness meme: auto-immune disease, because the only thing tough enough to kick my ass is me
Submitted by Melissa Austin

2. 

chronic illness memes: when i'm feeling down and someone says suck it up i get the urge to break their legs and say walk it off
Submitted by Talia Tedrow

3. 

chronic illness meme: oh, what's that you say? i don't look sick? well.. you don't look stupid but...
Submitted by Leanne Wood

4. 

chronic illness meme: oh my cousin's friend's sister's girlfriend used to have that, she had magic healing moon fossils implanted under her skin and now she's fine, you should ask your doctor about that
Submitted by Tabitha Hodges

5. 

chronic illness meme: i am not anxious, i am just extremely well educated about the things that can go catastrophically wrong
Submitted by Katie Smeltzer Ireland

6. 

chronic illness meme: my whole body hurts from not doing anything today
Submitted by Leah Larsen

7. 

chronic illness meme: why are there never any good side effects? just once i'd like to read a medication bottle that says may cause extreme sexiness
Submitted by AutoimmuneMom

8. 

chronic illness meme: being alive is so fucking expensive
Submitted by Leah Larsen

9. 

chronic illness meme: you can't have that condition you're too young! if only it had asked ID
Submitted by Sarah McGee

10. 

chronic illness meme: you've got it backwards actually, i'm faking being well
Submitted by AutoimmuneMom

11. 

chronic illness meme: when i'm trying to keep all my conditions in check
Submitted by Christina Chalgren

12. 

chronic illness mem: pain lets you know you are still alive. man i feel so, so, so alive right now
Submitted by AutoimmuneMom

13. 

chronic illness meme: recovery expectations vs. reality
Submitted by Karin Ursula Phelps Williams

14. 

chronic illness meme: they say always trust your gut. have you met my gut? you don't want to trust that bastard.
Submitted by Jayne Olson

15. 

chronic illness meme: the face you make when your doctor says let's try this new medicine
By Stephanie Nasby

16. 

chronic illness meme: i think your IBD is all in  your head. don't make me eat one of my trigger foods and lock you in a room with me.
Submitted by Jayne Olson

17. 

chronic illness meme: i can't diabetes today. don't make me diabetes today...
Submitted by Andrea Steeves-Belanger

18. 

chronic illness meme: i may be chronically ill but i'm also chronically fabulous
Submitted by Jayne Olson

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