Fighting The Stigma: My Battle With Chronic Pain

Fighting The Stigma: My Battle With Chronic Pain

As a young woman with chronic pain, I've struggled to find adequate care and treatment; this is a bit about my experience.
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Right now it’s 11:20 pm and I’m in bed with my heating pad trying to avoid taking narcotic pain medicine. The pain is overwhelming to both my body and mind. I’ve spent the last week being unable to sleep because of the severe pain in my hips and back due to my Ehlers Danlos Syndrome (a connective tissue disorder you can read more about here).

I am a 21-year-old female living with chronic pain. I am fighting stigmas every day. Did you know that doctors do not take the word of a female in pain as seriously as they do that of a male? This is proven research, and I have found it to be too true with many doctors.

I have some great doctors. But when I say I’m in extreme pain on a daily basis, I often do not get taken seriously.

I can't count the number of times I've been told that it's hormones, my low activity level, or "just normal aches and pains." I've been told to work on my core strength, my posture, and to get out and walk more often. I have EDS, chronic nerve pain and suspected fibromyalgia, scoliosis, and osteoporosis; these conditions are just not fixed as simply as that. I've tried acupuncture, chiropractors, essential oils, physical therapy, and almost everything else in the book. I try my best to manage my pain without medication.

I know I appear from the outside to be a pretty happy, “healthy” person, but just because I can manage a smile doesn’t mean I’m not in pain.

I stopped taking ibuprofen awhile ago due to the risk of rebound headaches and ulcers in my already sensitive stomach and because they simply don’t help with the level of pain I’m in now; but when doctors suggest I take Ibuprofen or Tylenol for my pain, I just want to laugh at them.

Due to my extremely slow moving GI tract, narcotics are not a popular medicine to prescribe for my pain. One major side effect of these medications is constipation and delayed gastric emptying. That can be a problem! However, I believe that it is my choice whether I would rather be in excruciating pain or risk adding a little more constipation to my already non-functioning colon (my colon is literally almost completely paralyzed!).

I am not addicted to narcotics. I do not self medicate with street drugs. However, I need pain relief.

There is such a negative stigma about the use of narcotic pain medication for chronic pain, but why should so many of us live in such pain? Why should we feel guilty or ashamed for asking for and using the only kind of medication that even comes close to helping with the pain?

Pain is a brutal and demonizing symptom, and to deal with it every day and not know for how long it will go on is daunting. Pain drains your energy and it kills your spirit. The chronic illness community needs more resources and better pain management, yet sadly it only seems to be getting harder and harder to find these resources.

I fight a daily battle with pain. And not having adequate pain management resources and also feeling conflicted about the “good” pain medication (the stuff that works), just makes being in so much pain even harder.

If you struggle with chronic pain, I urge you to advocate for yourself and find a doctor who takes you seriously and is willing to treat your pain. You are deserving of relief.

If you are someone who has a bias or judgment against people who take pain medication on a regular basis, I encourage you to imagine living in severe pain on a daily basis. Imagine not being able to go to work or go out and have fun; do you think you would want pain relief if you were the one living in pain 24/7?

I’m a 21 year old female living with chronic pain and I am fighting the stigma.

Cover Image Credit: Gallery Hip

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​An Open Letter To The People Who Don’t Tip Their Servers

This one's for you.
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Dear Person Who Has No Idea How Much The 0 In The “Tip:" Line Matters,

I want to by asking you a simple question: Why?

Is it because you can't afford it? Is it because you are blind to the fact that the tip you leave is how the waiter/waitress serving you is making their living? Is it because you're just lazy and you “don't feel like it"?

Is it because you think that, while taking care of not only your table but at least three to five others, they took too long bringing you that side of ranch dressing? Or is it just because you're unaware that as a server these people make $2.85 an hour plus TIPS?

The average waiter/waitress is only supposed to be paid $2.13 an hour plus tips according to the U.S. Department of Labor.

That then leaves the waiter/waitress with a paycheck with the numbers **$0.00** and the words “Not a real paycheck." stamped on it. Therefore these men and women completely rely on the tips they make during the week to pay their bills.

So, with that being said, I have a few words for those of you who are ignorant enough to leave without leaving a few dollars in the “tip:" line.

Imagine if you go to work, the night starts off slow, then almost like a bomb went off the entire workplace is chaotic and you can't seem to find a minute to stop and breathe, let alone think about what to do next.

Imagine that you are helping a total of six different groups of people at one time, with each group containing two to 10 people.

Imagine that you are working your ass off to make sure that these customers have the best experience possible. Then you cash them out, you hand them a pen and a receipt, say “Thank you so much! It was a pleasure serving you, have a great day!"

Imagine you walk away to attempt to start one of the 17 other things you need to complete, watch as the group you just thanked leaves, and maybe even wave goodbye.

Imagine you are cleaning up the mess that they have so kindly left behind, you look down at the receipt and realize there's a sad face on the tip line of a $24.83 bill.

Imagine how devastated you feel knowing that you helped these people as much as you could just to have them throw water on the fire you need to complete the night.

Now, realize that whenever you decide not to tip your waitress, this is nine out of 10 times what they go through. I cannot stress enough how important it is for people to realize that this is someone's profession — whether they are a college student, a single mother working their second job of the day, a new dad who needs to pay off the loan he needed to take out to get a safer car for his child, your friend, your mom, your dad, your sister, your brother, you.

If you cannot afford to tip, do not come out to eat. If you cannot afford the three alcoholic drinks you gulped down, plus your food and a tip do not come out to eat.

If you cannot afford the $10 wings that become half-off on Tuesdays plus that water you asked for, do not come out to eat.

If you cannot see that the person in front of you is working their best to accommodate you, while trying to do the same for the other five tables around you, do not come out to eat. If you cannot realize that the man or woman in front of you is a real person, with their own personal lives and problems and that maybe these problems have led them to be the reason they are standing in front of you, then do not come out to eat.

As a server myself, it kills me to see the people around me being deprived of the money that they were supposed to earn. It kills me to see the three dollars you left on a $40 bill. It kills me that you cannot stand to put yourself in our shoes — as if you're better than us. I wonder if you realize that you single-handedly ruined part of our nights.

I wonder if maybe one day you will be in our shoes, and I hope to God no one treats you how you have treated us. But if they do, then maybe you'll realize how we felt when you left no tip after we gave you our time.

Cover Image Credit: Hailea Shallock

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The Problem(s) With 'Autism Speaks'

As much as I would like to believe that this organization means well, I have to face the facts.

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Just about everyone has heard of Autism Speaks, a supposed "autism advocacy organization." Their familiar blue puzzle piece icon is often recalled by many. Just by looking at the name, you can tell it's a fantastic company with a great mission. Or is it?

I never really knew that much about Autism Speaks until I read an article one of my Facebook friends had shared. I was alarmed to see all the ways that they don't practice what they preach. OK, so yes, they do donate to the families of those with autism. However, the amount donated is less than two to four percent. A whopping 40-plus percent of the budget goes to advertising.

Another issue that really sparked my attention was the type of people they employ. A while back, Autism Speaks was run by a board that contained exactly zero individuals with autism or disability. They recently received a lot of criticism for this. One man, John Elder Robinson, who has autism, joined the board but quickly resigned because he discovered that the board had no respect for those with autism.

Another big red flag I discovered was the way they use that big profit to advertise autism: they don't really promote awareness, they promote fear. One mom labeled their marketing techniques as "disgusting," and I couldn't agree more. One commercial titled "I Am Autism" explains it all. It shows like a horror movie including lines like "I know where you live," and "If you're happily married, I will make sure that your marriage fails," and "You are scared, and you should be." There are also many other commercials and clips by Autism Speaks that solidify this opinion. One that really ices the cake is one where a mother states "she contemplated driving off a bridge with her child with autism, but only didn't because she also had a neurotypical child." Sickening.

As much as I love to support those with disorders such as autism, I will never support Autism Speaks. Their mission is definitely not one I could get behind. They are looking for a cure, which is not what the world needs. We need to better the lives of those who have autism instead of trying to "fix" them. Autistic individuals are still human beings, so @AutismSpeaks, please stop treating and advertising them like anything less.

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