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I’m Not Asking for Pity for My Chronic Pain — I’m Asking for Compassion

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My life unexpectedly changed just a few short days after I married my high school sweetheart four years ago. I woke up with excruciating neck pain, migraine, fever, swollen lymph nodes and achy joints. Not a single day has gone by that I have not had some degree of pain. Some days are better than others, yet some are almost intolerable.

It’s been going on for eight and a half years now. That is eight and a half years of illness, a slew of annoying and even debilitating symptoms, doctor’s visits, treatments, blood draws, unanswered questions, incorrect diagnoses, excruciating pain and immense fatigue. First it was a severe case of mononucleosis, then a chronic salmonella infection, and then a small, blood-sucking insect bites me to transmit Lyme disease. Being sick for this long makes one actually get “good” at being sick. It sounds terrible, but if you’re chronically ill, I think you’ll understand what I mean. You get good at getting your blood drawn, taking your pills, masking the pain and refraining from chewing someone out when they say “but you look so healthy” or “maybe you should be a little more positive.” Even after such a long and tortuous struggle, I still get judged. I never would have envisioned a small insect changing my life forever… but it did.

Pain becomes a part of you when it is constant, like an evil twin. Some days she is tranquil, and others she rears her ugly head. Pain can be all about the person and perspective. What may feel like a pin prick to some may feel like a laceration to others, and what may feel like a broken bone to some may feel like a bruise to others. When you’re chronically ill and have chronic pain, symptoms start piling up and getting muddled together. Sometimes there is so much pain, it can simply leave you crushed and perplexed.

Why me? How is this possible? When will the pain end? Is this what the rest of my life will be? Filled with pain, questions and doubts, yet I trudge on. I continue living, enduring the pain, pushing myself and doing the best I can. I’m not saying chronic illness and pain do not change a person. But I ask myself, will you be better or bitter?

Please don’t mistake my realism with negativity. There is a huge difference between the two. I’ve divulged my true concerns and described my pain to someone in the hope of gaining understanding, but what I received was judgment. This person doesn’t know what it’s like to have chronic Lyme disease, arthritis, fibromyalgia, chronic fatigue and POTS. I have pushed past excruciating and debilitating pain just to carry a smile most days. To run to the grocery store. And some days it’s a feat just to make it across the house to get my medication or water. I have fallen apart and have picked myself back up. I have crawled my way out of the dark hole that can consumes someone with chronic pain. I have carried myself through days where I would rather die than live in this much pain. Hearing judgment about my chronic pain is a big pill to swallow, a bigger pill than the 36 pills I swallow every day for my comorbidities.

The truth is, some days I actually pity myself. Why would I pity myself? First of all, we are all human. It’s OK to feel, to cry, to fall apart. We all have our limits, and we all get knocked down every now and then. It doesn’t matter what brought us down, but if and how we got back up. I know what it’s like to live a life of discomfort and uncertainty. A life full of misfortunes and misunderstandings. But I’m not asking for pity. I’m asking for understanding and compassion. I’m asking not to be ridiculed when my strength wavers.

It’s not laziness, it’s Lyme disease. I’m not exaggerating, I’m enlightening. Most importantly, I’m not weak — I’m a warrior.

In this world, we are all struggling. Whether it be finances, family, work, health… we all struggle to some degree. Wouldn’t it be nice if we could bypass the judgment and be more compassionate to help others lessen that load?

I’ve learned so much more in my years with illness. I’ve learned to appreciate the smallest things. Even if you imagine a life in sickness and pain, you are not prepared for the trials and tribulations it brings — no one ever is. Please remember that you may see me stumble and fall, but I will always get back up and keep moving. I may move more slowly now, but I am not stopping.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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The Chronic Illness Battle You Can't See in This Selfie

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What you most likely see in this photo is two smiling, happy friends who don’t get to see each other in person often enough. You can see them posing for a selfie. If you look closely enough you will notice things in the background.

woman hugging her friend in selfie photo at hospital

If you look carefully you will see that the friends are in a waiting room. You will see that one friend has a hospital bracelet on her wrist. You still see the smiles because the friends are close, and they are happy to see each other despite the difficult, painful situation.

What you can’t see in this photo is the massive pain one friend is in. You can’t see her struggles. You can’t see how hard it is just for her to sit up. You can’t see that she spent the previous day lying on the floor fighting wave after wave of dizziness. You can’t see that she was only on the floor because she couldn’t get herself anywhere else.

You can’t see that she only waited so long to try and see a doctor because of an ongoing inner argument about what constitutes an emergency, or what was even worth seeing a regular doctor. You can’t see that no one was available to go with her, until her friend stepped up.

You can’t see that she and her friend had already waited for nearly three hours at a nearby urgent care clinic and got sent to the ER because the urgent care clinic had at least another three hour wait.

This photo doesn’t show ER staff and other waiting patients roll their eyes when you take a selfie — they just don’t understand how much pain a chronic pain fighter can push through — because it’s the only option, even in the ER. This photo doesn’t show the other patients looking disgusted when you get called back before them. They don’t know what they can’t see, or what the intake nurse saw.

What I wish this photo could show was how much I love my friend. It’s too much love for a photograph to capture. This friend came to my aid when no one else could. She’s been with me every step of every way, even before I was so sick all of the time.

You can’t see in this photo that my friend fights her own chronic illness battle. You can’t see that she is in a relationship with an amazing man, and is a Superwoman Mom to three little kids, and works outside the home.

This photo doesn’t show her amazing heart and awesome support. It doesn’t show that she stayed a good friend when so many others left. I wish it could. I wish it showed how much I love this woman.

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When Chronic Pain Forces Me to Confront My Childhood Fear

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I remember when I was a young girl talking with friends about the worst possible way to die and each of us had a different scary scenario for death. I have no idea why we talked about such things, although the conversations were probably correlated to the scary movies we watched in the ’80s and ’90s such as “Child’s Play” and “Sleeping With the Enemy.” We were a generation drawn to scary movies. My biggest fear was being buried alive: That was always my answer if this random conversation came up. I must have seen a movie or show about someone being buried alive because ever since then I have had some form of claustrophobia. My younger brother and I used to wrestle as children and I literally would scream bloody murder if he (who was stronger despite our age difference) pinned me down for too long. I felt as if I was suffocating and worse trapped with no control.

Fast-forward many years and I found myself living in MRI machines because of my bike accident and subsequent chronic pain. It came to a point that I truly could not bear another MRI because I hated feeling trapped in the machine and literally had panic attacks. If any of my doctors needed an MRI, I was given some sort of sedative to relax me. They never worked. My worst case scenario of how I would die was coming true despite me surviving my accident: I felt buried alive in more ways than one.

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Jessica and her daughter

I was around the age of 14 when I began my search for a cure to chronic pain. With each day, month and year, I found myself sinking deeper and deeper into the ground. Maybe that is where the term “rock bottom” comes from. However I found myself under a pile of rocks that caused me to actually want to die because I could not bear another day in my battle with chronic pain, and worse, searching for a non-existent cure. I was not living and every moment of every day felt as if I was trapped inside my own body: a body of pain.

I am 35 now, managing pain naturally, and living a life of joy and gratitude as opposed to a life of pain. With that said, I still have moments where I freeze in fear and pain. I feel as if I am back in that MRI machine: gasping for air, unable to breathe, unable to move, trapped. These moments happen either as I am trying to fall asleep or when I first awake. Either way, the moments always happen when I am in bed. I can manage the mornings when this happens much more easily than I can at night. If I wake up with this feeling of fear and being literally stuck, I can will myself out of bed and exercise. People don’t understand when I awake so early and exercise before the sun is up at times, but this is what works for me. Exercise is truly one of my biggest tools for managing pain without pain managing me.

However, nighttime is different. Most nights I am way too tired to focus on pain or the random fears that enter my mind causing me to sweat, breathe heavily, have heart palpitations, and eventually make myself get up and just walk around the house. Then I get in bed and try to sleep again, and I am back in that MRI machine: stuck. This happens rarely, but there are those nights where I cannot even find enough gumption to read or watch something meaningless on television. Pain, fear, and the emotions that come with this invisible illness take over my mind and body. When nights like this happen to me, I cannot stop moving and yet I feel trapped inside myself. It is literally hell on earth. I cannot believe I lived in this state of pain and panic for over a decade.

I made it. That is what gets me through theses horrific nights: knowing that the feelings I am feeling will be gone, but they are torture nonetheless. If you ask my daughter why people are mean, she will respond with this: “Because they are sad inside.” Never judge a person by how they look on the outside or how they treat you. People will love you and people will hate you and none of it will have anything to do with you. Chronic pain is usually invisible and I try to remember when someone is rude to me or does not like me that they, too, could be fighting a battle I know nothing about.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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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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