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What We Need to Remember About People Living With Chronic Pain

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I am 25 years old and I just graduated from medical school. In the last two years, I’ve probably spent more time as a patient than a medical student. While all my friends and classmates are off doing something to advance their careers, I am staying dormant and excelling at doing nothing. And more than that, I am excelling at accepting my stagnancy without guilt or remorse.

These are five things I’d like others to remember after living with chronic pain for more than two years:

1. Believe me when I say I’m surviving. You ask me what I’m doing now that I’ve graduated, and I answer with a sad smile and say “surviving,” you laugh and respond with “aren’t we all?” You believe it’s a small joke made in friendly banter. No, I truly am working on surviving. To you, tired may be the fatigue you feel following a 24-hour shift after which you fall into a deep sleep and wake up replenished.

For me, tired is what I am all the time.

Tired of being in pain.

Tired of not being able to even sleep it off.

So when I say what I’m doing is surviving, it is equivalent to a full-time job for me. A job with no pay-off. When I say surviving, I mean waking up every morning and getting out of bed is a task. I mean that I don’t brush my hair for weeks because it’s too painful. I mean that sometimes after a day of activity, I am in so much pain that I need to be helped to the bathroom and back. Surviving is my full-time job.

2. Don’t call me a drug abuser or addict just because I know when my body has had enough and have no problem in admitting I need to go to the ER for help. If I went through medical school with almost-doctors who believed that I was a drug addict, then I can’t even imagine what people not in the medical profession say about their friends and acquaintances with chronic pain. I thought that I could be open in front of my peers, that their medical training would give them empathy or at least an indifferent acceptance, but no. People get addicted to things that take their pain away. I cannot be addicted to anything — not morphine or fentanyl or oxycodone, because nothing entirely takes my pain away. Ever.

3. Teach your children not to stare. Yes, it’s strange to see a young person who has a smile on their face with a purple walking stick. It’s curious to see a young girl limping about a mall, going about life as if nothing were awry. It is, however, extremely annoying when kids and worst of all adults stare blatantly. If you must look, do it discreetly. Tell your children it’s rude to stare. I don’t mind if they come up to me and ask me why I have a walking stick, but the staring is a constant reminder that I am different while I am just trying to live my life within the constraints of what is normal to me.

4. Doctors, please listen. Please don’t have an agenda in your mind or an arrogant approach to your own treatment methods. It’s frustrating when it gets to the point where you convince yourself your treatments are working, even when the patient tells you otherwise. Just because I put makeup on my face and happen to not be limping during one appointment does not mean you shouldn’t listen to what my pain was like since the last appointment. What I’ve learned from countless trips to hospitals and countless interactions with aloof doctors and snarky nurses is exactly what not to do if I am ever fit enough to practice medicine. Nurses, if you think a patient comes to the ER too often or is “faking it” despite objective evidence of distress/pain, keep it to yourself. It’s the doctor’s job to determine and since you are the first person the patient will see, the last thing he/she needs is your rude comments and your questions such as “are you really in pain?” or “let her wait for a bed.” Your training has taught you to be empathetic and caring, not to be dismissive and vicious.

5. Love me. Please, love me as I am now. I may not be who I was, but my soul is still the same as the one that belonged to the pre-morbid version of me. I am still evolving, trying to fit into this new shell while still fit in with the “normal” crowd. Please don’t take it personally if I cancel plans repeatedly because I’m in too much pain. Please don’t lose patience when I vent and complain and post about chronic pain all the time because to me the outlet is either outwards or inwards and I have enough pain inwards to last me a lifetime. Please don’t push me past my limits. But please don’t smother me either. My capacity for loving hasn’t changed one bit even though I might be cranky and irritable. Above all, give me hope. Give me hope for a better tomorrow by being a part of it. My health may or may not improve, but your support and love will take me further than any medications or treatments ever could. Please, love me.

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Finding the Difference Between Accepting My Chronic Pain and Giving Up

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I have a chronic pain condition. It is incurable, but can be managed, they say. It comes and it goes. Sometimes it seems to come and stay. When it goes, I spend quite a bit of time being afraid of when it will show back up. So I manage, because it is the only choice I have. And I assure you that I have run through the choices. Doctor after doctor, pill after pill, acupuncture, therapy, oils, diet and in my greatest of desperation, even brain surgery, but the pain persists. I have gotten great at hiding it except on the days I can’t.

I have a sweet friend who is also a nurse. She used to text me daily asking how my pain was that day. I always answered, often with a number. One day, I looked at the phone and was tired of talking about pain. I texted her back and told her that she was so kind, but to start asking me how my life was instead of how I felt. Those two questions seem almost the same.

How do you feel?

How are you?

But they are so different. I think that I got so used to answering the first question that I forgot how to live the second.

Everything I read tells me how important acceptance is to an illness. That at some point I need to use all the energy I keep putting into fighting this pain into living. Books, therapists and friends who have been here parrot the same thing. They tell me to just figure out who I am here. That this version of me will be different, but no less full, if I just let it. They ask me if I even know who I am here.

So I start to tell them. I tell them the girl here juggles doctor’s appointments, pills and manages her pain. I think about the things I have lost and can no longer do and the silver lining in me even tries to say a few things I have learned in the process. But this is just a list. This is a comparison of who I was before and who I am forced to be after. They remind me again to figure out who I am here. I keep answering the same way.

One day in the car I turned the radio down and I said ever so quietly over the loud of the traffic, I might never get better.”

In the moment, I wasn’t sad or angry. I was not even sure that I believed it. I think it was something that I just needed to hear in my own voice. Nothing magic happened. I didn’t feel any better or different or worse. However, I felt like this quiet part of me just breathed some kind of sigh of relief, like it had been let out of a dark closet and given some space next to me. I sat there in the quiet for a few seconds, wondering what should happen next. I said it again, this time more fearfully, worried that maybe saying it a second time makes it more real. My voice, I have learned, doesn’t make things any more or less true. They just are. Or they aren’t.

That moment was months ago. It was not some magic turning point. Actually, that day I just turned the radio back up and sang along. I put that tiny piece of acceptance right back in the dark closet I had let it out of. Like my pain these days, it comes and goes. Recently I have let it stay a little bit longer each time.

I have been struggling to figure out the difference between acceptance and giving up. I am willing to find the first, but not do the other. Just like the similar questions my friend asks me, they are not the same thing. One whispers truth in the car, the other keeps asking for help. They are both good voices to have. They both help give me answers to that question that keeps coming up — who am I here? I have been so worried that being here means I can’t go anywhere else. Eventually, I remember that on a map, here is always where you begin.

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When a Passenger on My Flight Pointed Out My Bag Full of Medicine

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Recently, I went on a trip to Miami. I had been looking forward to it and couldn’t wait to be on the beach, relaxing and soaking up the sun. The problem is I cope with a chronic illness and anxiety so traveling is hard.

I was so worried the week before the trip. I worried about having all my medicine in place and my symptoms flaring up. I worried about being so anxious and so sick I wouldn’t be able to enjoy myself. It’s difficult to live with a chronic illness and travel. That’s why I do it so rarely, but it’s also something I don’t want to be deprived of. It’s a mixed bag and it’s not easy, especially since anxiety and chronic pain are my constant companions.

The day my husband and I left to Miami, I was feeling worse than usual. The stress of traveling doesn’t help my symptoms. I had a migraine and pain in my lower back, shooting down my legs. I took some medicine before getting on the plane, hoping it would relieve the pain and anxiety.

I slept for the first hour of the flight, but when I woke up, I knew something was wrong. I was extremely nauseated and felt as if something was pulling me down. My vision began to darken, and black spots formed in my eyes. I got up and told my husband I couldn’t see. I walked a few steps towards the flight attendant and said the only thing I could think of: “Something is wrong. I can’t see.”

I don’t remember the moments afterwards because I passed out. When I came to, I still couldn’t see, but I could hear people above me. There were two nurses on the plane that day, and they were both tending to me. They fitted me with an oxygen mask, and my sight slowly returned.

They asked me questions, and I answered as best as I could with head nods while my husband filled in the gaps. What had I taken? How much? What were my symptoms? Why had I taken the medicine? Why was it prescribed?

Suddenly, the passenger I had been sitting next to told the nurses to look at the bag in my seat.

“You should really take a look at that. That’s all her pills,” he said somewhat judgmentally.

For anyone who hasn’t lived with chronic illness and pain, seeing a bag full of medicine could be, well, worrisome. They pulled the bag out, and I could hear my husband trying to explain that I suffer from a multiple health issues.

Later, my husband told me everyone had been shocked while passing around the bag. I was embarrassed about the judgment, but I was also so scared. I had just experienced something terrifying — life-threatening even. For the rest of the trip, I leaned against my husband, unable to think clearly or speak. I was wheel-chaired off of the plane and met by paramedics at the gate. They began to ask the same questions about the medication, and they even asked if I take it to “feel doped up.”

When I look back on this, I realize how difficult it is for others to understand chronic illness. Others see things that are everyday for me — like taking a lot of medication — very differently. I’m grateful for the help that was given to me, but at the same time, the judgment and misunderstanding was frustrating and hurtful.

People see a bag full of medicine and assume things about you. They see a young, healthy-looking woman and assume a bag full of medicine equals drug addict — not a sick person. But they don’t know what it’s like to live in this body. They don’t know what I have to endure daily and what it takes just to make it through the day.

The truth is, I’m really sick, so I take a lot of medicine. It’s not hard to explain, but it’s hard for others to understand.

Lead photo source: Thinkstock Images

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When I Chose $20,000 Over My Health and Happiness

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Where do I go when I’m faced with life’s biggest questions? The beach. 

I can think and find my answers to life’s biggest struggles when I’m right in front of the ocean. We live about 50 minutes from the Jersey Shore, and it remains my place of peace when things in my life seem to be unravelling.

My biggest fear after I left the Pain Rehabilitation Center at the Mayo Clinic in Minnesota was how I would be able to work with chronic pain. I truly didn’t believe I would be able to be a social worker while managing pain naturally. I had an intense routine I followed daily to manage my pain without it managing me.  

Jessica Martin with her child

I spent about six months or so not working once I left the Mayo Clinic and used this time to truly focus on my health and management of chronic pain. Every day I followed a schedule, and eventually, I didn’t focus on my pain as I once had after happiness started to truly enter my heart and soul. 

I felt alive for the first time in 20 years. I was exercising, practicing meditation twice a day, taking walks, reading and finding all the things I thought I had lost because of chronic pain. I was thriving despite chronic pain.

However, I was a college graduate with my degree in social work, and I knew I had to start applying to jobs in my field after my six months of getting my chronic pain under control. I was terrified. I knew I couldn’t do a 40-hour week, but I needed health insurance, so I had to make sure I worked at least 32 hours a week. I was so afraid that work would take away all the progress I had made in my management of pain. 

I went on an interview at a medical facility that had patients with dementia, mental illness issues, cancer, autism — you name it. The job seemed amazing, and I loved the facility.

During my interview, I was honest with my would-be boss and explained I had chronic pain but was managing it naturally. I told him I would need about two breaks a day, and he was very impressed with my honesty and how I managed chronic pain since many of their patients also had chronic pain.

He then began asking me questions on how I managed pain and if I would be able to teach some of the patients the techniques I used such as meditation. Bingo! I was pumped. I wanted to just tell my future boss that I would take the job and start the next day, but then fear crept in and I asked him if I could have a couple days to think about the position. 

The following day, I sat at the beach and asked the universe if I should take the job or not. My intuition was so strong that I really didn’t need to ask anyone their opinion. I knew I wanted this job, and after eight hours of sitting on the sand at my favorite place in the world, I drove home and called my soon-to-be boss and took the job. 

My intuition was right on point, and I loved my job. I was able to incorporate my chronic pain management tools into my career, and I was helping people and making a difference. I was proud of myself.

Out of the blue one day, I received a phone call from a different facility asking me if I was interested in interviewing for the director of social services at one of the most famous nursing homes in our area. The director offered about $20,000 more than I was making at my current job, and my ego took over and I agreed to be interviewed. I was managing pain amazingly, and I was in a great place — mind, body and spirit — so I thought, “What the hell, I may as well at least go for an interview.” 

Here’s where I made one of the biggest mistakes in my career: I took the job despite my strong intuition to stay where I wasn’t making a lot of money, but I was healthy and happy. I gave my two weeks’ to my boss at my dream job and began working as the director at my new job. 

By the end of my first week at my money-making, high-profile job, I knew I had made a huge mistake. I was working more than 40 hours a week with no breaks, no time with my patients and no time to incorporate my chronic pain management tools. My self-esteem began to spiral downwards as my pain began to increase by the day. 

I was miserable, filled with regret and in tears every night of the week. Weekends were no longer fun because I was no longer taking care of my health five days a week.

I chose money over my health and happiness. 

Within a year of my $20,0000 mistake, I found out I was pregnant and gave my two weeks’ notice. My boss wasn’t a huge fan of me anyway and told me on a daily basis, “Jessica, you are just not a good sales person. We need our numbers up. We need more people who will pay privately. Your focus needs to be on our facility.”

No, I am not a good sales person. I couldn’t agree with this person more. I was a social worker. I hated sales, I hated shopping and I went into social work to help people, not help a business make money.

Chronic pain has taught me more lessons in my life than any other ailment or event has. This was another hard lesson I had to learn. If I could go back in time, I never would have chosen money over my health and happiness. I would have followed my intuition and stayed at the job where I made little money, but it was a job that made a difference in my health and the health and happiness of those I worked with. 

I didn’t go to the beach when offered this $20,000 mistake. Lesson learned. There is nothing in this world that’s more important than your health and happiness. 

If you’re lucky to find a job where you can manage your invisible illness, do not leave no matter what! Don’t make my $20,000 mistake.

Follow this journey on No One Gets Flowers for Chronic Pain.

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The Secrets of Chronic Pain You Can't See From the Outside

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Sharp, pinching, burning, shooting, dull, aching, prickly, throbbing. You name the pain, I’ve felt it. I’ve been living with chronic pain of varying degrees for over 20 years, but you can’t tell just from looking at me. From the outside, I look healthy, vibrant, fit and young, but the story on the inside could not be more different.

Twenty years of pain has made its mark on me. It has torn through me like a hurricane, destroying me and exhausting me. It has drained me, scarred me, and left its imprint. It took and stole things from me that I have not recovered. There is not one part of my life that hasn’t been affected by the pain. It has changed me. It created a void that, even now, I have not fully come to terms with, especially when it comes to relationships. There has been so much loss. 

I used to blame myself, believing I developed pain because of all the things I had done wrong. I punished myself for it because who else was there to punish?

I am not the same person as I was before the pain. I am more serious, less flirtatious, less funny. I am less me than I was before. I have lost parts of myself that I can barely recall. I find myself recoiling from things that would previously bring me joy because I am so afraid of the possible pain that could follow. The pain has taken its toll and left me to rebuild from the rubble. 

In my darker moments I still feel shame about my pain. I feel less than, inferior, defective, useless, undesirable, uptight. I have felt this way for years, and regardless of all the positive things I have done for myself, that feeling doesn’t just simply disappear. Pain ate away at my self-worth and self-esteem for over half of my life. Rebuilding isn’t happening overnight, it is taking years.

Living with chronic pain that is invisible to others can be defeating. No one sees and no one truly understands. The weight of carrying this pain around on my own has been unbearably lonely at times.

Today, I no longer feel the need to blame or punish anyone. I am going to continue to reclaim myself, one step at a time. I am going to add new pieces to the mosaic that is me. The pain has shaped me, but it has helped me grow as well. It has forced me to grow. I may not be as bright and sparkly as I used to be, but I am kinder, more compassionate and more empathetic. I am true to myself, I listen to body and I respect myself. Every day I work to lessen the feelings of defeat, of missing out, of loss, but they do remain. They are part of the grief that comes with losing so much of yourself to pain and illness.

This blog was originally published on Kira Lynne.

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When My Boss Mocked Me For Being Too Ill to Work an Extra Shift

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I’d just finished a 4-hour shift, which realistically was more like five and a half hours. My boyfriend and I had sold our second vehicle to help pay some bills. We’d been getting by fairly easily with one car, but it usually meant I had to sit around after work waiting for a ride. On this day in particular, I’d taken a seat at the bar amongst the regulars who were lost in the hockey game on TV. My boss came running over, begging me to cover a shift later in the day.

“Come on Kate, it’d only be a few more hours.”

I’ve come to realize there’s a delicate balance between communicating your symptoms and complaining about them. I thought I’d done a relatively good job of explaining just how much pain I was in by the end of my 4-hour day, and everyone was very much aware of my condition. I calmly reminded him of my situation and told him I needed to get home to rest.

He turned to my manager and they both started to laugh. They openly mocked me in front of my co-workers and a few customers. They thought it was simply hilarious I couldn’t physically manage to work a full day.

I left work that day feeling utterly humiliated. To them I looked like a perfectly healthy 23-year-old woman. I looked like all of the other waitresses who were perfectly capable of working a 10-hour day. They didn’t know I went home to a painful physical therapy regimen everyday after work.

They didn’t know how badly I wanted to work those extra hours, how badly we needed the money for medical bills.

And they had absolutely no idea how cruel their “joking around” actually was.

Since that day, my mind’s been in a constant battle over what people think of me.

Do they think I’m a loser who sleeps all day?

Do they think I’m “faking” how much pain I’m in?

Do they think I’m just being lazy?

What bothers me most is they’ll never know the person I once was. They’ll never know the girl who worked two jobs while going to school. They’ll never see the girl who volunteered for every shift she could get.

But the cold, hard truth is I’ll never be that person again.

If only they knew, if only they could see the real me.

It’s been about six months since I quit my job. I developed a nasty pneumonia which left me bedridden for weeks, and my chronic pain has only worsened since. I’m determined to one day soon make it back into the workforce again, hopefully in a job a little more suited for the chronically ill (if that even exists).

I’ve learned so many things over the course of my illness, and I take each lesson to heart. No one is ever going to know how much pain I experience in a day, how nauseous I get, how exhausted I am all of the time. No one is ever going to know what it feels like to live a day in my body, so how could I possibly expect them to fully understand?

It’s up to me to find a balance and live as happily as I possibly can.

I can’t sit around wasting what little energy I have on the opinions of others.

It’s entirely on my shoulders to fight through the pain, the fatigue and battle this disease to the best of my ability.

I quite often find myself filling out job applications. I get about halfway through before I realize I’m dreaming. It’s not realistic right now. My body needs time to heal, time to process. There are days when I want to give up, when I want to crawl into bed and never come out. Some days I have to drag myself to the yoga mat just to do my physiotherapy, but right now it’s the only weapon I have. The only thing I can do to fix my situation is to get my health back on track. And in doing so, I’m slowly rebuilding the gratitude for life that I once had.

You don’t have to look sick to be chronically ill. There’s an assumption in our society that if you look able-bodied, you should be able to work an 8-hour day. I suppose that may be the case for most people, but there are thousands of us out there struggling to do so in silence. Chronic pain, depression, social anxiety — you never truly know what’s going on inside someone else’s body.

Don’t be the person that causes someone to go home feeling humiliated, just because they appear to look healthy.

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