Chronic migraines, neck and shoulder pain have been my constant companions since childhood. To the outside eye I look just like everyone else. But, like most people who suffer from chronic pain, there's a lot going on behind the scenes. Things people with chronic pain want you to know can help you understand what a friend or partner who navigates a chronic pain condition is really going through.
One way to get an instant lens into what chronic pain sufferers are dealing with is to watch the new Netflix Lady Gaga documentary, Gaga: Five Foot Two, which, among other things, documents the singer-songwriter's struggle with chronic pain. One of the things Gaga: Five Foot Two does exceptionally well is portray the duality of people who are living with chronic pain conditions. Life doesn't stop because your body hurts, and while you might be curled up crying for most of the day, sometimes there are commitments to honor where you're expected to show up and be fabulous.
While for most of us that doesn't include performing at the Super Bowl halftime show, people with chronic pain are still expected to go to work, and honor family and social commitments. Sometimes we go to extraordinary lengths to try to be OK for both the things we both have to do, and want to do. Gaga told the Los Angeles Times that she refuses to change her show to make it physically easier for her, responding in the same way many chronic pain sufferers do: "Because I can’t let it take me down ... If I were to give up, it would be against everything that I stand for."
However, pretending to be OK when you're in pain can be mentally and physically exhausting, and sometimes you push through because you don't want to let the pain win, even though you know you're going to feel worse the next day. Other times you have to call a draw, and retreat to take care of yourself, kind of like Gaga has done by postponing her European tour dates to get treatment for fibromyalgia.
Personally, I've done cryotherapy (going into a sub-zero chamber for three minutes) just so I could get on an airplane without being in excruciating pain during the entire flight. My back, neck, and shoulders are always slathered with some kind of pain salve, and I carry an arsenal of essential oils and rescue medications with me at all times in case I get a migraine. These things people with chronic pain want you to know can help us all have a little more compassion for what's it's like to live every day with this misunderstood — but very real — condition.
1If We're Vocal About It, The Pain Is Really Bad
Most people with chronic pain aren't busy talking about it all the time because chronic pain sufferers are in pain more often than not. Just because we're not talking about it doesn't mean it went away. For me, it's just part of my life, like brushing my teeth. Generally, it's something I deal with privately with my doctors, family, and close friends. If I'm being vocal about my pain, it's pretty severe — like the time I had migraines every day for more than two months. I felt so helpless and alone that I finally posted about it on Instagram. I also worked almost every day during this period with an ice pack wrapped around my head (yeah, that's not a new hat in the photo), because who can take two months off work for pain?
I've had regular migraines since I was 6, and developed chronic neck and shoulder pain after an accident when I was 7 where I was hit in the head with a baseball bat during a t-ball game. Basically, the default state for my neck and shoulder muscles is clenched. The muscles don't know how to relax on their own. When a massage therapist is working on my neck and shoulders it sounds like someone is loudly crumbling up a piece of paper, which is actually the sound of the fascia tissue releasing.
Most of the time I manage my neck and shoulder pain by doing exercises on a foam roller, putting ice on my neck and shoulders daily, and using hemp and CBD oil-based salves. Two that have provided me enough relief that I'm not entirely focused on the pain are Humbled Extracts (the peppermint one), and CBD Medic. Having some go-to remedies that help, even a little, allow me to spend less time faking feeling well.
2We Don't Want To Cancel Plans
When we cancel plans we're not trying to passive aggressively tell you that we don't want to hang out. We do want to feel well enough to do all of the fun things, but sometimes we just don't. A friend, and fellow chronic pain sufferer, and I were just talking about this today. She told me: "I want people to know that I want to feel good and be able to have fun and enjoy things. But, when I can't, it's not that I don't want to be involved, and I hope to be invited again."
We both agreed that dealing with chronic pain can be mentally exhausting. When I make plans I never know how I'm going to feel when the day arrives. Sometimes I'm OK, other times I make myself push through the pain, but there are occasions where I need to lie down with ice even though I'd rather be out doing the fun thing.
Brandy Horrell summed this up perfectly on The Mighty: "If I back out on plans at the last minute, I’m not flaky. I just can’t predict how I’m going to feel day to day."
3It's Not All In Our Heads
Chronic pain is one of the most misunderstood medical conditions, in large part because it can't be seen. The Washington Post reported that, "Chronic pain affects more people than cancer, diabetes, heart attack, and stroke combined. The Institute of Medicine estimates there are more than 100 million sufferers in the United States, costing the nation as much as $635 billion a year in medical treatment and lost productivity."
Additionally, the Journal of Health Psychology published an analysis that concluded that people whose chronic pain is not believed by friends and family can experience significantly more pain than those who are taken seriously.
Personally, during my two months of migraines last year I got an MRI, and I was actually hoping they would find something, like a tumor. During my darkest moments during that two months, a tangible cause like a tumor was something I felt I could deal with, address, and attack. When the MRI came up clean, and I was back to chasing a phantom cause for real, and debilitating pain, I burst into tears. Living with chronic pain is like having a ghost inside of your body, and sometimes it's overwhelming.
4We Don't Need You To Fix It
It's basic human nature to want to fix things. I get it; I'm a fixer myself. However, if you suffer from chronic pain, absolutely everyone and their mother has some kind of miracle cure you just haven't tried yet. People send you articles, suggest medications, alternative treatments, supplements, and offer lifestyle advice.
I've been dealing with my condition since I was 6, so trust me, no one is more well versed in this than the person experiencing it. I've tried dozens of conventional and alternative treatments with varying degrees of success. I'm doing my own research all of the time, and I don't need you to fix me.
5We Look Totally Normal
Because chronic pain is invisible, people who live with it every day look totally normal. In fact, chronic pain sufferers may even go the extra mile to tend to their appearance to compensate for how bad they feel physically. I know that I do this. I don't want the pain to dictate how I look because it's already controlling how I feel.
"We often hear 'But you don’t look sick!' but the truth is that most of us try very hard to pass as normal," student researcher and professional patient Tea Lynn Moore wrote for Chronically Awesome. "We rest before going out and take our pain meds at the optimal time. At times we hurt so much and are tired from trying to play healthy that we feel like laying down right then and there, but we (usually) hold it in until we get home to our beds."
6We Don't Need Your Pity
“I absolutely do not want your pity," pain sufferer Angie Glenn told The Mighty. "What I do want is your love and acceptance.” Please don't feel sorry for us, and please don't think we're being dramatic about how much pain we're in. The reports that some people accused Gaga of using chronic pain as an excuse to postpone her tour because she just didn't feel like performing are exactly why we don't tell people we have chronic pain; two of the unwanted reactions include pity, and being accused of making excuses to get out of something.
"I use the word 'suffer' not for pity, or attention, and have been disappointed to see people online suggest that I'm being dramatic, making this up, or playing the victim to get out of touring," Gaga explained in an Instagram post. "If you knew me, you would know this couldn't be further from the truth. I'm a fighter."
When someone who suffers from chronic pain shares their experiences with friends, family, or in Gaga's case the world, all they want is your understanding.
7We Need A Lot Of Sleep
Sleep is one of the most restorative things for your body. People with chronic pain generally don't sleep very well, and while it may seem like we're always taking a nap, we actually need to try to get as much rest as we can. A study published on Vector, a blog for the Boston Children's Hospital, found that sleep above all else helps alleviate chronic pain, even better than pain killers.
While I used to be able to push through on little sleep in my early 20s, now if I go more than day without proper sack time, I will suffer. It's not that I don't want to do the epic fun stuff every night; it's that I can't. The price for me is too high to pay.
"Chronic pain doesn’t only involve pain," pain sufferer Shayna Leeds told The Mighty. "Insomnia, nausea, vomiting, depression, brain fog, irritability and more are also par for the course." Personally, if I neglect sleep my brain feels like it's surrounded by fog, I'm more likely to get a migraine, the pain in my neck and shoulders is worse than it is if I am well rested, and I get super cranky, crying over every little thing.
8Please Don't Tell Us To "Think Positive"
One thing that really drives me batsh*t is when someone tells me to turn to my higher power, or to think positive thoughts in order to make my pain go away. As Terri Johnson told The Mighty, "If thinking ‘positive thoughts’ would make it go away, I’d already be pain-free."
While there are some studies that suggest that thinking positively can help alleviate chronic pain, it's not a cure. I cannot actually control my migraines with my mind. If that were possible I would have stopped having migraines ages ago.
9Thank You For Being There For Us
While there are a lot of things we hope you won't do, one thing we do hope is that those closest to us will be there for us to offer unconditional love and understanding. Having a chronic pain condition makes me feel weak, and I have a hard time asking for help. If I have to ask a friend to drive me to the hospital or to a doctor's appointment, the pain is really, really bad.
The people who have been there for me, spent hours sitting in dark rooms while I got IVs, asked how I was doing, brought me food, filled my prescriptions, walked my dog, given me hugs, or even just sat with me in silence have made a huge difference in my life, and I don't even have proper words to express how much I appreciate it.
"I’m not seeking attention, drugs, sympathy or special treatment," pain sufferer Faith Merryn told The Mighty. "All I’m seeking is understanding and acceptance, just like anyone else."
If you've offered any of these things to someone with chronic pain, thank you. It really does make a big difference.
