I was first diagnosed with chronic pain when I was 7 years old. I just turned 21. For the past 14 years, I have told as few people as possible about my illness. I have my reasons for this. It’s not a very glamorous topic, and I would like for most people to assume I’m a normal 21 year old.
Recently, my condition seems to be changing, deteriorating more rapidly than doctors can, or want to, deal with. These past few months have been full of exercises in looking for silver linings, but there are times I’ve had to be honest with myself about my disease and my pain. Learning how to cope with pain is a process, and I had to start writing down things I needed to remind myself: don’t take your pain out on other people, try to remember that people won’t understand when or how much pain you’re in, don’t defend yourself for making your health a priority. They were hard truths to deal with, but they have helped me.
I wake up in pain, and I go to sleep in pain. I can not explain the kind of toll this takes on you mentally, physically, and emotionally. These coping mechanisms worked for me, and I can only reference my own pain, hence the following truths are my stories, but I do believe that other pain patients experience many of the same frustrations I do. I can’t talk about what living in pain is like for everyone. What I can do is talk about my pain, something I largely avoid for several reasons — the chronically ill and in pain are meant to be brave and handle their suffering in inspiring ways, talking about it with the wrong people can make it worse, and trying to keep up a positive front all being important ones.
These are some things I’ve learned about how to be chronically ill, and how to manage living with chronic pain, and still try to remain as sane as possible. I hope that should other chronic pain patients read this, that they will find some comfort in knowing they are not alone in their pain.
1. People can’t understand.
Unless you live in chronic pain, or with a chronic illness, you cannot possibly imagine it. For months, my health has been rapidly deteriorating, and I realized quickly most people either don’t understand, or don’t care.
The hardest part of dealing with chronic illness/pain for me has been cutting people out of my life who make it harder to deal with. This wasn’t a choice, but a necessity. I couldn’t take any extra negativity, I couldn’t handle defending my situation time and time again to people who were supposed to be my friends. I guess I understand, it’s hard for them to deal with, maybe. Unlike me, they don’t have to deal with it. It is also important to remember that when people can’t see your suffering, when they can’t see outwardly that you are in pain, they can’t be expected to understand.
The reason for the archaic pain scale with the faces slowly becoming more warped in pain with a scale of 1-10 is because there is no test for pain, no base line, there is just pain. I’m lucky to have a few friends who — while they don’t pretend to understand — still put up with me and do their best to help me be comfortable and get out of the house. Find your people and keep them by your side, you’re going to need them. Get anyone out of your life who is making your journey more difficult, you don’t need that kind of negativity.
2. Some medical professionals suck at their job.
First, all hail good nurses. Good nurses have done more for me than any doctor I’ve seen so far. That said, for every one good nurse there seem to be two bad ones. The ratio changes for doctors. By my experience, almost all doctors suck at managing chronic illness and pain. They want you in and out of their office, and they don’t want to deal with you on a weekly, or even more frequent basis. Yes, most people I have gone to asking for help — be it an ER doctor, an internist, or one of the dozens of specialists I’ve seen — have shrugged, decided they don’t want to deal with this and washed their hands of me. Not all doctors are created equal. I have had exactly one good doctor so far, and I’ve seen dozens.
I’m not saying good doctors don’t exist, I’m saying that, as in any profession, some people excel far above others. Keep searching for the right doctor for you, it’s going to be miserable and time consuming and frustrating, but despite all the bad doctors I’ve met, I believe there is one out there that can help me. I’ve just got to find them.
3. You get to feel however you want.
People won’t understand what it’s like to try to get through a day, and you don’t have to explain why you feel how you do today. I found myself frustrated whenever someone asked “How are you feeling?” If my answer was “good,” then I found they were less likely to be understanding if I needed a break, or if I couldn’t keep up with the group. Wasn’t I feeling good today? It’s all relative.
For me, a good day is one where I do not reach a 9 on that pain scale. If I told someone I was feeling bad, or having a bad pain day, I would quickly be reminded there are worse conditions than mine, that I could be dead already, that there are people starving all over the world. These are all true things, but do not negate my right to have a bad day.
Staying positive is an important part of managing life with chronic pain, but bad days still happen. To lie and say that even when you’re in pain every day has to be bright and sunshine-y is not mental health, it’s crap. You get to feel however you want and you don’t have to explain why you are having a bad day. You also don’t have to defend why your health takes priority over everything else. If people around you don’t understand that, you might want to re-consider who you are keeping in your inner circle. While you have the right to feel however you want, be careful not to let your pain cause you to lash out at people. It is hard to be patient when you are hurting, but you can’t get let your frustrations out on people. You have the right to be in pain, but pain does not give you a free pass to become cruel.
I have also noticed that people seem to think that chronic illness somehow instills some sort of super human strength inside the person suffering. As if all sick people experience pain but survive solely by persevering with integrity and grace. I have to side with Julius Caesar who said, “It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.” Make no mistake, I do not wish for my life to end. But there are days where the pain has been so great that I would have been very happy to die. That’s the side of chronic pain the universe doesn’t see — how much you keep wrapped up to try to put on a façade of a “normal” person.
I’ve had many days where I found myself losing track of the conversations happening around me, enveloped in pain and trying to hold back tears or outward manifestations of the pain. I know many other chronic pain patients who try to stay quiet about their illness, and it is brave and wonderful and inspiring and all those words often used to describe those of us living in the genre of sick personhood. You still are allowed to have bad days, even if the world could be a worse place, and you don’t always have to pretend the bad days aren’t bad days.
4. Be honest.
I’ve learned you must be honest with people when you are sick, and when you need them to understand. My teachers, coaches, and friends I’ve trusted with the details of my illness/treatment are all people I need to be up front with when I need extra time for an assignment, or I can’t go to practice, or I’m not feeling up to going out. However, it’s also very important to state that you don’t have to disclose any of your medical history to people you are not comfortable discussing it with. It’s your choice to decide how, when, and in what detail you would like to discuss your illness with someone, so never feel bad about keeping details to yourself if you are uncomfortable discussing them. Your body, your rules.
Also, be honest with your doctors. This can be difficult because I feel that, culturally, I have been raised to think that doctors had the answer and that I didn’t need a second opinion. If you don’t think they’re listening, if you don’t think the current treatment is working, if you think more tests need to be run — demand it. I’ve learned that playing nice while trying to get treatment just doesn’t work. I don’t seem to get any attention until I start advocating for myself. I’ve also learned to be honest when evaluating doctors. Before I tried to always be kind. Maybe that doctor had a bad day, maybe their head is somewhere else, perhaps they’re exhausted. These are all things that are understandable- but if you are not receiving the care you deserve it’s time to start making calls. I’ve realized that the only way to get better treatment is to make them give it to you. You deserve the best quality of life possible.
5. Listen to your body.
When you’re a professional sick person, you have to learn to listen to your body. Stay in if you need to stay in. I was a 20 year old student-athlete who was active on my university’s campus when my illness quickly took a turn for the worse. Giving up my sport was heart breaking, but physically I couldn’t do it anymore. I pushed myself long and hard before I listened to what my body was telling me: slow down, you can’t do this. I needed to take a step back from all the things I was participating in and try to get my health back. I still find myself frustrated when I have to cancel plans with friends, I even had to cancel my 21st birthday celebrations because I just wasn’t feeling up to it. I could have pushed it, but I knew how I felt, and I knew that if I went out and forced myself to stay out all night that I would pay for it later. It is hard to give up things you want to do just because your organs suck at being organs, and it is disappointing to be stuck in a body you particularly care for. I do believe that I have more good days when I slow down, and don’t push myself harder than my body can handle. Learn to listen to your body’s limits, and it can help increase your overall wellness.
6. Go out when you feel up to it.
When you’re in constant pain, or you just don’t ever seem to feel good, it can be easy to become a homebody. Maintaining your quality of life as much as possible is essential to coping with chronic illness. I know — I just said you should stay in if you need to, but if you are feeling up to going out by all means do so! Staying in sick all day every day can quickly lead to depression and anxiety. Even small things like going out to a movie seem to do wonders to cheer me up if I’ve been stuck home sick for a few days. If I find myself having a good day and I didn’t have plans, I try to take advantage of healthy moments, even if that just means a walk around the block with a friend. It can be tricky to find where the line between going out and having fun and going out and wearing yourself out so that you’re even sicker after is, but searching for that area is well worth the effort it requires.
7. Accept your body, even when you hate it.
Having my body shut down on me so painfully and rapidly was hard for me to accept, I was so active before and my illness was very manageable. While I have every intention to stay involved with my case, to find relief and answers, I had to accept that — for right now — this is the one body and one life I have. I’ve had to sit back and watch my athleticism slowly disappear, the dark circles develop under my eyes from sickness and exhaustion, and watched the color drain from my lips. It is beyond frustrating to watch my body waste away and have no say in it, no way to stop it. I am not particularly fond of my current situation. But when I accepted it, when I stopped trying to act as if I wasn’t sick, and started to listen to my body I found myself having more less bad days, which for chronic pain patients are synonymous with good days.
8. Seek out anything that will keep you smiling.
Every chronic pain patient I have met has also struggled with depression, some mild some as debilitating as the pain that caused it. Find anything you can to keep your spirits up: good books, movies, a special tea to drink, a place in the park that you like to visit — do whatever you can to keep smiling. It sucks to be sick and in pain, and unfortunately for chronic pain patients the elimination of pain is a fantasy. So we must deal with the pain while trying not to let it change who you are. Pain can change you, quickly. It makes you angry, depressed, frustrated, exhausted, scared, and other unpleasant adjectives. If you can find one song, one poem, one comedy sketch that can get you to smile hold onto it, and refer back to them often. Try to find whatever you can to get you through the next second, hour, or day.
9. You are allowed to ignore people who think they know what’s best.
For some reason if you are chronically ill, people in your life from family members to random hospital personnel will start to fancy themselves physicians. They might recommend a new diet, snorting some homeopathic remedy, covering yourself in some sort of home made salve, or some other ridiculous thing they once read on the internet. These people mean well. They hope that their insight will bring you relief. You are allowed to ignored these good intentioned people, specifically the ones who have no knowledge of your illness or medicine. I’ve taken to smiling, saying “I’ll look into that,” and then politely excusing myself from the conversation.
10. Advocate for yourself.
This is the single most important thing I’ve learned as a professional sick person: you must advocate for your own health. Doctors see many patients every day, nurses are busy, and none of them know what it’s like to live in your body. Take action, get involved in your case, start doing research. Go into appointments with documentation, ideas, second opinions, anything you can get to push your treatment forward. Medical professionals may not understand the urgency of your case, or the severity of your pain, so make it clear. Write down everything you need to talk about before your visit, and make sure you get every question you have answered. If your doctor can’t answer them, get a referral or find another opinion. Nothing is more important than your health and trying to maintain the best quality of life possible.