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

Syndicated from Huffington Post.

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.

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.

On Being A "Highly Sensitive Person"

Over the last two years, I have figured a lot out about myself and it seems like every time I look into a seemingly small thing, I'm bound to find 3 more issues behind it. Sometimes it seems like it's never ending. My mom has been saying to me for years now "Maybe someday soon we'll finally figure out all your issues!" shortly to find out I have more issues.

When my therapist first told me a year ago I was a "highly sensitive person", I was kind of annoyed. Mentally, I don't think I'm sensitive. Working in the fashion industry has given me a pretty thick skin and I think I tend forgive people pretty easily if I can psychologically understand where they're coming from or just completely forget it. This is where I thought she was coming from. After it was mentioned to me and researching a little more, I realized this is not what she was referring to. My body is sensitive. It turns all the stressful things that should be just mental and churns it into physical pain in my body. I am princess-and-the-pea kind of sensitive. My dad jokingly calls me "delicate princess". I don't know if it's the combination of having lived in NYC + chronic pain, but this seems to be the aftermath.

But, I think that because I have been living at my parents' home in the middle of nowhere and am by myself most days, my sensitivities have increased. In one of my CMPS/FMS support groups, someone posted a quiz and I took it. These things are slowly getting better, the better I feel. I couldn't even listen to stressful music (i.e. rap, rock, etc.) for a while and now I'm starting to feel like my normal self again. Things become easily stressful for me and the best way for me to calm down is just to try in relax in a dark room with soothing music.

Here are some of the statements below:

-I am easily overwhelmed by strong sensory input.
-I seem to be aware of subtleties in my environment.
-Other people’s moods affect me.
I find myself needing to withdraw during busy days,into bed or into a darkened room or any place where I can have some privacy and relief from stimulation.
-I am easily overwhelmed by things like bright lights, strong smells,coarse fabrics,or sirens close by.
-I have a rich,complex inner life.
-I am made uncomfortable by loud noises.
-I am deeply moved by the arts or music.
-My nervous system sometimes feels so frazzled that I just have to go off by myself.
-I am conscientious.
-I startle easily.
-I get rattled when I have a lot to do in a short amount of time.
-When people are uncomfortable in a physical environment I tend to know what needs to be done to make it more comfortable (like changing the lighting or the seating).
-I am annoyed when people try to get me to do too many things at once.
-I try hard to avoid making mistakes or forgetting things.
-I notice and enjoy delicate or fine scents, tastes, sounds, works of art.
-Being very hungry creates a strong reaction in me,disrupting my concentration or mood.
-I become unpleasantly aroused when a lot is going on around me.
-I make it a high priority to arrange my life to avoid upsetting or overwhelming situations.

"Why the Funniest People Are Sometimes the Saddest"

After Robin Williams' death, I ended up being a lot more upset, in ways I couldn't imagine, about a celebrity I had never even met. Of course, when anyone commits suicide, it's an upsetting thing but there is something so deeply disheartening about it being a comedian.

Like I had mentioned in my "Finding the Funny" post, a good chunk of my time in New York was spent sitting at a long table in the back of Olive Tree Cafe with a bunch of comedians, in Greenwich Village, right above the Comedy Cellar. After being told myself from several comedians that I was "a dark and twisted person", I slowly realized that it wasn't just me. Several comedians have periodically joked with me that being a comedian is fucked up profession. You are literally on stage trying to make people laugh at you and I have learned that many comics are some of the deepest, darkest people I have ever met. (I am not trying overgeneralize all comedians. This is obviously through my own personal experience.) Everyone knows, and I have been told a million times myself, that humor and sarcasm are a psychological coping mechanism for depression, pain, trauma, etc.

If you take a look at Robin Williams' "rap sheet" (non professional resume), here's what you have: one failed marriage due to an affair Robin had (and was later sued by the woman he had the affair with for giving him herpes), second marriage failed to first son's nanny, third marriage to a graphic designer, major drug and alcohol abuse in the 70's and 80's, overweight and immensely shy kid until high school (read as: seriously bullied), complicated and terrifying relationship with his dad, fear of abandonment issues, plus his mom was a Christian Scientist (That alone is enough to screw you up). He's also made public quotes like these:

Such a sad quote for such a funny guy. 

I'm not saying what happened isn't heartbreaking, but I'm honestly not surprised. The next day (yesterday), several comedians (pretty much exclusively who I follow) started tweeting about depression and Jim Norton, a comic I have met on several occasions, wrote a beautiful article on TIME.com about depression in comics. (I made the title of this post his title in quotes for anyone that got confused.) Jim will be the first person to tell you he had struggled with depression and addiction and he also happens to be hilarious. In his article, he had mentioned "The funniest people I know seem to be the ones surrounded by darkness. And that's probably why they're the funniest. The deeper the pit, the more humor you need to dig yourself out of it." In his 25 years doing stand up, he has known eight comedians that have committed suicide.

Then Chris Rock tweeted/Facebooked this statement:

So then I looked into a little more and found out from Slate, that Laugh Factory, one of the biggest comedy clubs in LA, has an in house therapy program. Here's a quote from the article; "Two nights a week, comics meet with psychologists in a private office upstairs, discussing their problems while lying on a therapy couch formally owned by Groucho Marx. "Eighty percent of comedians come from a place of tragedy," explains Laugh Factory owner Jamie Masada. "They didn't get enough love. They have to overcome their battles by making people laugh."'

My point in all this--just because people are hilarious, sweet and look put together, they may be fighting some serious demons inside. Everyone is fighting a battle we know nothing about. Depression and all mental illnesses are invisible illnesses and if you haven't ever been clinically depressed yourself or know someone going through it, it can be very hard to relate to someone who is. In my bouts of dealing with my weird, painful medical issues, I have even been diagnosed with depression. People who commit suicide are not cowards, (Shepard Smith, you should be fired and punched in the face.) they are people who truly feel like if they leave, the world would truly be a better place without them.

Even though it may be frustrating to be a supportive friend or family member, try to do what you can.

Just so everyone is aware, here is a list of symptoms of depression and warning signs of suicide (from WebMD).

Symptoms of Depression:

• difficulty concentrating, remembering details, and making decisions
• fatigue and decreased energy
• feelings of guilt, worthlessness and/or helplessness
• feelings of hopelessness and/or pessimism 
• insomnia, early morning wakefulness, or excessive sleep
• irritability, restlessness
• loss of interest in activities or hobbies once pleasurable, including sex
• overeating or appetite loss
• persistent aches or pains, headaches, cramps, digestive problems that do not ease even with treatment 
• persistent sad, anxious or "empty" feelings 
• thoughts of suicide, suicide attempts

Warning Signs of Suicide:

• a sudden switch from being very sad to very calm or appearing to be happy
• always talking or thinking about death
• clinical depression (deep sadness, loss of interest, trouble eating and sleeping) that gets worse 
• having a "death wish" tempting fate by taking risks that could lead to death, such as driving through red lights
• losing interest in things one used to care about 
• making comments about being hopeless, helpless or worthless 
• putting affairs in order, tying up loose ends, changing a will
• saying things like "It would be better if I wasn't here" or "I want out." 
• talking about suicide 
• visiting or calling people one cares about 

These signs should be taken very seriously. Call 1-800-784-2433 for a suicide hotline, contact a mental health professional right away or go to the ER for immediate treatment.

To end, here is a quote Zelda Williams (Robin's daughter) posted after his death. Rest in peace, Robin Willams. We will always remember you as the sweet, generous and gentle soul that you are. Xx