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