Empathy and Chronic Pain

“I love when people that have been through hell walk out of the flames carrying buckets of water still consumed by the fire.”

-Stephanie Sparkles

There is a huge misconception that people with chronic pain want, thrive even off of pity.  Many believe those with chronic pain want to be coddled and treated somewhat like a baby.  I have had many people say to me: “Oh my, so young to be diagnosed with such a disease. I feel so badly for you.  Why did you have to fall off of that bike at such a young age.  Its such a sin.”  I know logically that people’s hearts are in the right places and they truly feel for me and others who have an invisible illness.  However, I never wanted pity from anyone even when I was at my lowest point with chronic pain.  I definitely do not want any pity now at a time in my life when I have been managing chronic pain so well for such a long time and have tried as hard as I possibly can to find the good in my accident and life with chronic pain.

The Oxford Dictionary defines pity as: the feeling of sorrow and compassion caused by the suffering and misfortunes of others.  I do not want people to view me as a suffering thirty five year old who has had the terrible misfortune of falling off of her bike at a young age leading her to a life to chronic pain.  However, I do want encouragement and at times empathy.  The terms pity and empathy are not alike whatsoever.  The Oxford Dictionary defines empathy as: the ability to understand and share the feelings of another.  People always ask me what helped me the most in my journey with chronic pain.  I learned so much at the Mayo Clinic in Minnesota.  I learned from doctors, physical therapists, nutritionists, etc. on how to manage pain naturally and not allow pain to take over my existence.  I learned that I could live the life of my dreams despite not finding a cure to chronic pain.  However, the best part of the program was the empathy I received from the people who were also in the program.   I became friends with people of all ages, races, genders, from all over the country.  On the surface most of us looked like your average American but we had one HUGE thing in common: we all had a form of chronic pain and for most of us our pain was not visible.  For ten years no one understood how I felt inside as pain after a long time becomes not just physical but emotional as well.  I was one hundred percent alone for a third of my life.  I was a turtle who only came out of her shell when she was desperate enough to spend time with people just as not to be alone in her pain for a few minutes or hours. The Pain Rehab Center at the Mayo Clinic allowed me to come out of my very hard, broken shell for weeks.  I was no longer alone.  I was understood and able to share my feelings/emotions with others who did not pity me but empowered me to keep going despite chronic pain.

There are challenges I face now and I do not share them with many people because the last thing in the world I ever want again is pity from friends and family no matter what my difficulties may be.  I want to be encouraged and empowered.  Pity does nothing but make another person feel worse than he or she already feels.  I love knowing people believe in me and believe in my dreams.  I do not want to hear: “I am sorry you are going through this or that.”  I want to hear: “Jessica, you are so strong.  You got this.  I have every ounce of faith in you and I am here if you need anything.”  You do not always have to be in someone’s shoes to express empathy or encouragement.  The greatest thing you can say to a loved one with chronic pain is: “I have no idea how you deal with this invisible illness every day.  You are so strong and I am so proud of you.  I am always here for you.  I believe you, you are never alone.”

A quote always sticks in my head when I write about empathy and I will close this article with this: “I do not want you to save me.  I want you to stand by me as I save myself.”

Being Judged Because I “don’t look sick”

This is exactly what someone looks like with chronic pain.  This picture was taken at a place called, Long Wood Gardens which is where we spent my dad’s past birthday.  To people walking by who do not know me would never believe I have chronic pain.  I am trying to go back in time and visualize this picture fifteen years ago when I looked nothing like this and my world was spiraling out of control due to chronic pain.  If twenty-one year old Jessica saw this mother and daughter at a well known garden exhibit, she probably would have cried wishing she could be the person seen above.   The Jessica of past would never have thought this Jessica has chronic pain and would have been filled with jealously just at the fact that this person seen above was a smiling, happy mother spending the day with her family.  Twenty something Jessica would have thought: “Sure, maybe this in shape, happy mom isn’t perfect but I would give my right arm to have her life.  If this lady could live with pain like I do for just one day she would never be able to have a beautiful daughter and be happy at a place like this.  I’ll never have anything like this girl.”

I wish I could tell my younger self that one day she would be the woman she sees who is smiling a real smile, healthy, and a mother of a more than beautiful daughter.  I am misunderstood on a weekly if not daily basis.  It was easier for people to believe I had chronic pain when I was forty pounds heavier, depressed, unhealthy, and at the doctors for pain at least three times a week.  I never worked out a day in my life until I was the age of twenty-two.  I never ate extremely healthy.  I could do keg stands with the best of them and my idea of a healthy dinner was pizza with broccoli on top.  People who know the Jessica I am now have a very hard time believing me when I tell them of my past because of how dedicated to health I am.  I used to hear whispers at the gym when people did not realize I could hear them over their headphones: “That girl says she has chronic pain but there is no way she does.  It is probably just for attention.  If I was in a lot of pain I would not be able to run on the treadmill or lift a weight.”  Hearing comments like such or knowing that some people do not believe me used to infuriate me but not so much anymore.  I used to feel the need to justify myself which takes a LOT of energy and is a total waste of time.  When asked or confronted on how I was able to do things when I had ‘chronic pain’ I used to go into my entire story: “Believe it or not, I exercise and live the way I do because of chronic pain.  I spent ten years searching for a cure and taking tons of medications for pain until I wanted to end my life and ended up at the Mayo Clinic in Minnesota where I learned to manage pain naturally.  They taught me to exercise correctly, and physical therapy taught me about weight lifting and the importance of strength training.  If I did not exercise or do all the things I do for my natural management of chronic pain I would be a total wreck just like I was in my young twenties.  You should see pictures of me from back then.”  This is literally a paragraph I would say on a daily basis: at least once a day.

Then I woke up.  I began to realize that the more and more I justified my invisible illness, the more I was focusing on my pain.  I spent years working on not focusing on pain and now I was spending an hour a day justifying myself to people who I was not even close to.   People are going to judge you no matter what: invisible illness or no invisible illness.  I truly believe people talk about other people as a way to not have to deal with their own problems.  I know.  I used to be one of those people.  You have no need to justify yourself to ANYONE.  The only person you need to improve for or impress is YOU.  We need to be more concerned with how we feel about ourselves and less concerned with how other’s feel about us.  It is your life, your health, and your happiness.  Do not waste the energy that some of you fight damn hard for on other people’s opinions of you and your life.  Never forget that everyone you meet is fighting a battle you know nothing about.

What Chronic Pain Feels Like…

“Chronic pain can make you feel like your life is being erased one moment at a time.”

Unknown

There are two types of pain and although neither are enjoyable, one is at least bearable.  The first type of pain is ‘acute pain.’  I’ve yet to see what is cute about any pain but I definitely did not come up with the terms found in the dictionary.  Acute pain usually has a resolution within six months and the treatment goal is no pain.  Opioids and narcotic analgesics are effective and there is a clear time as to when the pain will go away.  I have broken my ankle twice and because I knew the cause and the cure, the pain did not even bother me.  For a person without chronic pain, he or she may be miserable for the six months it took for their ankle to heal but for someone with chronic pain, a broken ankle is like a walk in the park except with the use of crutches.

Chronic pain comes from the Latin word: “time.”  The term chronic pain is pretty indicative to the invisible illness: chronic as in the pain NEVER GOES AWAY!  Chronic pain is pain that lasts six months or more and can occur without any indication of injury. This is the most frustrating disease as sometimes there is no known cause and one truly begins thinking he or she is crazy or the pain is “all in their head.”  Treatment options for chronic pain are very limited although I spent over ten years searching for a cure to my personal chronic pain.  I came to the conclusion with the help of the  Mayo Clinic that there was no cure but there was rehabilitation. I learned that one can live with chronic pain and not allow pain to dictate their life, health, or happiness.  I whole heartedly believe that chasing a cure to chronic pain for more than a year will leave you with more pain, more distress, more hopelessness, and more depressed than you have ever been in your life.  I know this was true for me and I chased a cure for over ten years: ten years of my life that I will never get back.  I do not regret those years because I am able to write and help others in their journey with chronic pain.

People ask me at times what chronic pain feels like and it is a question that is very hard to answer.  However, chronic pain is REAL.  Imagine having an illness you hate more than any other illness.  Whether that be a migraine, the stomach flu, or restless leg syndrome non-stop.  The pain or vomiting literally NEVER GOES AWAY.  You spend every waking hour of every single day in severe pain.  The pain is all you can think about morning, afternoon and night.  You barely sleep because the pain or the fear of the pain is so unbearable.  Pain rules your life and you will stop at nothing to rid your mind and body of the pain.  It feels as if someone is stabbing you over and over again and you have no control over their behavior.  You one day want to be stabbed to the point where you die but death refuses to come, just more pain.  That is how a person with chronic pain feels when he or she has yet to find their rehabilitation.  Remember that the next time you pass any judgement on a person with chronic pain.  Nobody asks to have chronic pain and I promise you whether or not a person’s pain is visible is a moot point.  Pain is pain and in my thirty-five years on this Earth, nothing has been more challenging than my journey with chronic pain.

Desperation and Chronic Pain

Do not ever lose your sense of humor, no matter how difficult your journey is at this given time and place.  I believe two things got me through my toughest years of searching for a cure to my invisible illness: the love for my family and the rare times I laughed.  Ironically my dad is the person who fit into both these categories: I did not give up because of my love for him and there were times he was truly the only person who could make me laugh.

If you understand the above cartoon, I’m sorry for your battle with chronic pain.   I remember back when I was in a terrible place with my invisible illness cancelling doctor appointments on a monthly basis because I was literally in too much pain to get out of bed, get dressed, and drive anywhere.  I chose to lay in bed on those days and just cry at the unfairness of my disease and the frustration I had that I could not find any relief no matter what doctor, medication, surgery, or specialist I tried.  I did not claim medical bankruptcy for buying clothes and having fun.  I was spending all our families money on one thing: a cure to my never-ending pain.

I started laughing today as I was playing with my daughter because the most random memory came into mind.  It was around the year 2001 and I was on my tenth year of searching for a cure to chronic pain.  I was living in Boulder, Colorado living two lives: one life was with my friends having fun drinking and living the crazy college life; the other life searching for a holistic cure to chronic pain as I truly thought I had put in my ten years using Eastern medicine and Colorado was a great place to find a ton of different approaches to pain.  Did any of them work?  No.  I was living two lives.  It is hard to follow your nutritionist’s advice to stop eating all wheat based foods and be drinking vodka tonics most nights.  Talk about an oxymoron.   Back to the funny memory (this memory is funny now but at the time it was anything but humorous.)  My dad was visiting me in Colorado for his birthday and Easter.  His visits meant the world to me but I really wanted him to believe I was doing a lot better than I was despite the fact that I was still on my now eleven year search for a cure to chronic pain.  I was seeing a hypnotist at the time who claimed she could cure all the pain I had.  After a few sessions and no relief she recommended me seeing her friend who used the newest technology to help people who were in physical pain.  I remember my dad taking me to this ‘doctor’s’ office and literally praying that the hypnotist was correct and this magic machine could cure me.  This was a moment of intense desperation.  The ‘doctor’ charged a fortune for me to sit alone in a room with what appeared to look like an oval robot.  I am not making any of this up.  After paying him an exuberant amount of money, he had me sit in a room by myself with this robot that apparently set off magnetic frequencies that dulled or removed a human’s physical pain.  Both this doctor and robot made out well that afternoon, but I was a hot mess.  Not only did I feel beyond dumb, I realized I had come to a point in my battle with chronic pain where I was relying on an oval, black machine to cure my invisible illness.  It was mere weeks later that I hit my rock bottom and ended up at the Mayo Clinic in Minnesota.  Looking back, I can thankfully laugh at this madness but at the time I was in seriously bad shape.

This story that I just threw out there may seem very odd to the average person but to a person with chronic pain this anecdote is sadly much more common than one would believe.  People with chronic pain will literally do ANYTHING to relieve their pain.  You may think he or she is crazy but as Elvis Presley once stated: “We are all addicted to something that takes the pain away.”  Part of my addiction to my invisible illness was searching for a cure and I am more than grateful that I found a way to live, laugh, and be the person I am today despite never finding that cure.  None of you are crazy and I know all of you can one day laugh at the madness we put ourselves through because of chronic pain.

Why I No Longer Talk About Pain

“Whatever you are talking about you’ve got.  You have got to start telling the story the way you want it to be.”

Abraham Hicks

My journey with chronic pain can be summed up in three phases:

1. Spending every waking second talking, thinking, and focusing on pain.  After my scars had healed from my bike accident, the pain seemed to get worse.  I talked about my pain constantly.  I went to a few doctors but back in the nineties chronic pain was not a well known disease.  Not one doctor used the phrase ‘chronic pain’ and prescribed different medications in the hopes the pain would subside.  I talked to my friends, family, and even people I hardly knew about pain.  I wanted someone, anyone to hear my words and my pain despite the fact that it was invisible.  My close friends and family were very empathetic and loving during the first few years of my journey with chronic pain.  I was asked on a daily basis how I was feeling.  At first, I welcomed questions regarding how I felt because I could tell that people cared and believed me.  Fast forward some time and the questions became very frustrating and depressing.   I did not feel better, the pain was only getting worse, and I felt that I was letting everyone down that cared because I was not only not getting better but the pain was completely taking over my body, mind, and spirit.
2. After the first few years in my journey with chronic pain, I began to stop talking about pain.  I only talked about my invisible illness with doctors, specialists, and at times my dad.  I hid my chronic pain from everyone and when asked how I was feeling my response was always the same: “I’m fine.”  I spent most of my life during this phase searching for a cure.  Chronic pain had completely taken over my life despite the fact that I did not talk about my condition.  I thought I was going crazy and I did not want to lose my friends and family.  Slowly I began to isolate myself just so I did not have to bring anyone down and did not have to answer questions about pain.  I got to a point of hopelessness and gave up on finding a cure, worse I gave up on my life.
3. Fast forward ten or more years and I finally heard the words: chronic pain.  I was in Minnesota at the Mayo Clinic seeing every doctor possible to find a cure to my invisible illness. I spent months there undergoing tests, taking medications, and seeing every specialist possible in the little city of Rochester, MN.  After a few months, my main neurologist at this amazing hospital told me the ugly truth: I had/have chronic pain and there was no magic cure but there was a program right there in Rochester that taught people with chronic pain how to manage it naturally and live a happy life despite pain.  I was hesitant, angry, and depressed at first but I finally gave in and entered the Pain Rehab Program where I did get my life back without finding that cure I swore I could not survive without.  I stopped talking about pain all together at this point in my journey with chronic pain.  However, I stopped talking about the pain for myself not for other people.  I learned that for me, talking about pain only brought more pain into my life.  The more I talked and thought about pain, the more pain I had.  This was a very difficult thing to do at first and still is at times as when I am having a hard day with my invisible illness I come off as bratty or in a bad mood (which is a normal mood for someone who is having a difficult day with pain.)  I did not want my loved ones to forget that I had chronic pain just because I no longer talked about or brought attention to my incurable disease.  I now say: “I am having a difficult day” to my close friends and family when my pain is controlling my mind and body.  These difficult days are infrequent but the term chronic pain literally means that the pain is chronic and will not just go away.

What controls our minds, controls our lives.  What consumes our thoughts, consumes our lives.  What we talk about on a consistent basis is what we will get in return.  If we are consistently talking, thinking and dwelling about our pain the Universe has no choice but to bring more pain into our lives.  Some parts of my days or nights I am unable to distract my mind from pain and must practice non-resistance.  However, I am able to distract myself most of the time and I do whatever I can to train my brain to not think about pain.  I used to not talk about pain because I was so miserable I literally wanted to die.  I was tired of disappointing my family and friends with the same answer: “The pain is only worse and nothing is helping.”  I now do not talk about pain for myself.   I want to feel good and I do not want pain to control my life.  It does not matter what other people think.  I manage pain for me, not for anyone else.  I found what works for me and talking about pain all the time is only going to increase my pain levels and bring me back to a place I never want to face again.  I have a life now despite pain now and I would be a fool to do anything to change what has worked for me.  Just because a  person does not talk about pain does not mean their pain is not there.  He or is she is just stronger than the pain they are managing on a daily basis.

To the Teacher of a Student with Chronic Pain

“It’s like swimming upstream every time you are awake.”

-Oriana Hill

Middle school is not easy for anyone, whether you are in the ‘popular group,’ the ‘intellectual group’,’ the athletic group,’ ‘the party group,’ and so on.  The popular Eighties film: “The Breakfast Club” pretty much sums up the life of a teenager in their teen years.  I did not fit into any group when I first entered Seventh grade.  My bike accident happened right as summer began after my Sixth grade at a private school.  I was excited for the summer but very anxious to enter a public school where I knew no one and would be the new kid on the block.  My anxieties about entering a brand new school were only intensified after my bike accident when I then had half a shaved head, chronic pain, and a face that was still difficult to recognize even after recovering for three months.  One would think that the students would be cruel to me but it was not just the students that misunderstood me, there were some teachers who truly made that first year at a new school a bigger disaster than it already was.  The funny part is that my scars still were evident: my hair had not grown back all the way, I still had bruises and as I stated before my face was not yet healed by any means.  I was in both physical and emotional pain and I feared going to school every day of the week.

I had one teacher who taught History/Geography in my first year of Middle School.  I had never been very interested in either History or Geography but this class was right before my lunch period where I ate lunch in the bathroom alone daily just so no one could see me and I would not be made fun of or worse be the only kid among one hundred students eating all alone.  I spent the fifty minutes of the class I already did not like watching the clock tick by, dreading the sound of the bell for lunch time.  There are certain moments we never  forget and one of those moments for me happened in this particular class.  I was called to the front of the room to point out a certain state on the map the teacher had hung up on the chalk board.  I could hear the whispers behind me as I timidly walked up to the front of the room, facing thirty other kids.  My heart was pounding, my palms were sweating and I had totally forgotten what the teacher had asked me to point out for the class.  I may have been watching the clock while he was teaching the lesson and had no clue what he had even asked me to do.  Either way, I could not find the state or city the teacher had asked me to find.  He was not kind about my inability to follow his directions and kept pushing me to find what I knew deep down I could not find on this damn map.  After about five minutes, tears welled up in my eyes and I ran out of the classroom and into the nearest bathroom where I slammed the door and let my tears fall.  No one came to see if I was okay.  I stayed there until the bell rang for the dreaded lunch I would be eating in that same bathroom stall.   To this day I have trouble with geography.  Up until a couple of years ago, I thought that Seattle was a state.  There may be no correlation to my ignorance to geography at the age of thirty five and my experiences in Seventh grade but I am sure there has to be some relation.

Eighth grade was a tad easier for me in school.  My visible scars had healed and my hair had grown back and I was able to hide chronic pain for a long time.  I began to have friends and enjoy learning again.  I did not eat lunch in the bathroom and made two friends who are still my closest friends twenty years later.  Nothing was ever easy as I was fighting an invisible battle with pain but at least I did not have the added stress of being put down by certain teachers and peers.  I believe that teachers need to have an extreme sense of empathy just as I had when I was a social worker.  We all need to remember that people are fighting battles we know nothing about.  There is a reason kids act out in school: no one is born “bad” and I truly do not believe there is such a thing as a bad kid.  I could not count on my peers when I entered this new school because I was not only the new kid but I was the new kid who looked like a ‘freak.’  I should have been able to rely on my teachers and there were many that were extremely helpful to me and without their empathy and support, I am not sure I would have made it through that first year of middle school.  Just because one is a doctor does not mean he or she is a good doctor, just because someone is a parent does not mean he or she is a good parent: the same goes for teachers.  You can have all the knowledge in the world of Geometry and World History but what students need to learn the most is how to treat other people.  I will never understand how Geography is more important that empathy.  I thank this teacher for being so hard on me and teaching me what I know is not okay.  No, I never found that damn state on the pull down map during that Geography class but I did learn strength and I learned how important it is not to judge someone no matter what they look like and I started to learn how important empathy is.

 

Feeling Buried Alive: Chronic Pain

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 Eighties and Nineties such as: “Childs 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/crazy 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 that if any of my doctor’s 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.

I was around the age of fourteen 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 thirty-five 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 am able to do at night time.  If I wake up with this feeling of fear and being literally stuck, I can will myself out of bed and exercise.  People think I am crazy because 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.  I do not have restless leg syndrome but know what it feels like because 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.  And people wonder why the number one reason a person with chronic pain dies is by suicide.  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.

Guilt and Chronic Pain

“You are not obligated to do everything a healthy person does.  You are not obligated to be an inspiration. You are not obligated to hide your illness to make other’s comfortable.  You are allowed to know your limits.  You are allowed to have bad days.  It is not your fault if other people leave you because of your illness.  It is not your fault that you have an invisible illness.  You do not have to apologize for something that is out of your control.”

Unknown

I never truly acknowledged the amount of pressure and guilt I put on myself until my daughter, who is now four was born.  I have always been a perfectionist but I never want to fail as a mother in any way, shape or form.  However, I believe my quest to be the perfect mom at times causes my anxiety levels and stress levels to go up which in turn increases my pain levels or at least I notice my chronic pain more.  There are things I did not have as a child that I want my children to have, but deep down I take this motherhood thing to a whole new level.  I love my daughter more than anything in this world and as most parents know it is a love that is unlike any other love in the world.  The love I have for my daughter scares me at times.  I wonder am I doing this or that right, analyze her actions as ‘age appropriate’ or dare I use the term: ‘normal.’  I never want her to be sad, feel abandoned or have a bad day.  The pressure I put on myself to make my daughter happy can at times be unhealthy for both of us.  That realization and throwing that sentence out into the world is not easy for me to do.  I am very much like other mothers I know and am friends with but I believe some of my childhood and my journey with chronic pain has shaped me into a mother who worries way too much about how her daughter is doing/feeling/acting and not enough time focusing on how I am doing/feeling/acting.   Cognitively I know and most of us realize this: the happier and less stressed/healthier I am, the happier my daughter will be no matter what we are doing.

I had an appointment for a physical scheduled for this gloomy Monday morning and I truly hate going to the doctor’s office because it reminds me of my ten year search to find a cure to chronic pain, during which I LIVED in the offices of every doctor imaginable but what I now dislike more is the guilt I put on myself because my four year old comes with me.  I almost cancelled (in hindsight I wish I had) because I did not want to drag her to a doctor’s office even though it is harder on my than her: thoughts truly do create our reality.  I packed snacks, games, books, magazines, colored pencils: the works just in case the wait was long which it ended up being: way too long of a wait for that matter.  After an hour and a half in the waiting room, I honestly could not take waiting any longer and Kayci had been patient up until we passed the sixty minute mark.  I told the front desk I would have to re-schedule and decided to go to a different office as I got very bad energy from the office and honestly the receptionists were very rude.  I have learned to follow my intuition and for some obvious and not so obvious reasons this is not a doctor’s office I ever want to go to again much less bring my four year old to.  The guilt kept getting worse as the clock ticked by and the loud TV screamed out medical advice.  By the time I finally made a choice to leave, I could feel my chronic pain mounting which I am usually able to put on the back burner.  It actually felt as if I had gone there for chronic pain and I have not seen any doctor for pain for years.  I think that is where my guilt stems from and that is absolutely ridiculous.

I did search for a cure for over a decade.  I did drop out of college for two years because my quest to cure my chronic pain took over my entire being.  I do feel that I lost ten years of my life but that is why I decided to learn how to manage chronic pain naturally.  With that choice, I must go easier on myself especially when it comes to parenting.   I am so far from perfect and have made many mistakes in my life but I know one thing and that is that I am a great mom.  If there was such a thing as a perfect mom, we would be living the life of Stepford Wives and I am sure half of their children are rebelling somewhere in the world.  I want to let go of the guilt.  I want us all to let go of any guilt we feel due to our invisible illness whether that be chronic pain or not.  I did not ask to fall off of my bike and have brain surgery.  I did not ask to live a life with chronic pain.  Neither did any of you.  I am exhausted from being so hard on myself and living in the world of apologies.  How many times a day do you find yourself saying: “I’m sorry.”  We are a generation (especially females) of guilt, feeling as if we are not enough, and saying the two words: “I’m sorry” at least ten times a day.   We are doing the best we can.  Are other people putting pressure on us or are we doing it to ourselves?  We can blame society, our friends, our family but in the end we need to stand up for ourselves and take care of our health and happiness because we are our biggest enemy which is such a shame.  Life is too damn short to live one more second in the realm of guilt.  It is odd, I know my readers are doing the best they can with their invisible illness and I am sure you feel the same about me.  Why do we credit others so much and forget the person that matters more than anyone in our lives: OURSEVLES.

Loneliness: Is It Such a Bad Thing?

“loneliness is a sign you are in desperate need of yourself”

-rupi kaur

Loneliness comes in many forms and there is a huge correlation between chronic pain and feeling desperately alone.  Many people (as I once did) isolate themselves from their friends, family, and the world when in the wraths of chronic pain.  Fifteen years ago I spent my days alone in doctor’s offices or in bed crying each and every day away.  I isolated myself for many reasons: I was jealous of everyone who did not live in pain every day of every week, I felt that no one would possibly want to be around someone who was once a fun, energetic girl who turned into a negative, sad, angry person and I honestly came to a point in my journey with chronic pain where I could no longer fake being happy because pain had taken over my body, mind and spirit.  I felt alone whether I was with people or by myself: the latter just took away the fakeness I could no longer muster up for people whom I believed would end up deserting me anyways because of my invisible illness.

I am at a different place with chronic pain and no longer find myself isolating from the world.  I have very close friends whom I can share my truest feelings with, a family I adore, a daughter who is the biggest miracle to ever enter my life, and those random people who come in and out of your life because of where you spend your time.  However, there are times I feel absolutely alone, misunderstood in ways I am not even sure those with chronic pain would understand as I am not sure there is a correlation between my personal loneliness at times and my invisible illness.

I am Jessica and at times I feel I should not only use my name as a noun but as a verb as well.  People always tell me that I am the truest Gemini they have ever met because I am diverse in many ways and beat to my own drum.  To be honest I no longer give a ton of credibility to astrology but there are many commonalities I have with the descriptions of a Gemini.  Not to mention, I did at the age of eighteen get a tattoo of the Gemini symbol on my back: brilliant teenage move, NOT.  I remember when I got the tattoo I was very down and battling chronic pain like a beast attacking my entire being.  I wanted a tattoo and it is true once you get one you tend to want more.  There was a reason I chose my horoscope symbol as my first tattoo.  I had always had a fear of abandonment and my bike accident/chronic pain only intensified this fear, causing me to believe no one I loved would ever stay in my life for too long and because pain was my only hobby, passion, or purpose in life I had no idea what to get for a tattoo.  I decided to get the Gemini symbol because it was one thing I could think of that would never change.  I was born on June 7th and no one could ever take away my birthdate, nor my astrological sign.  As odd as it may sound, I had no identity but chronic pain and I definitely did not want the word PAIN drilled into my skin more than it already was.

As I was working our this morning I looked over at a book I keep on an end table in our living room entitled: Simple Abundance.  I love this book and used to read it daily, highlighting different points that stood out to me and made sense in my life today.  Over the past year or so it has become a book for decoration like the picture frames placed in various places throughout our home.  I was doing a cardio/interval training workout that allots one to two minutes in-between exercises to breathe and drink some water.  During those two minutes I picked up this much needed book that I allowed to turn into a decoration and began reading what I had once highlighted.  Then it hit me, like a ton of soft bricks.  I have been feeling this sense of loneliness because I am not taking the time I truly need for myself.  I am rarely, if ever alone and yet have been feeling this sense of loneliness which is not a common feeling for me.  Then again, my truest partner in crime is my four year old daughter and it is hard to get a lot of soulful, intellectual time when teaching her to swim or coloring in one of her many coloring books.  I would not give any of our time up for the world but I do need to start looking within myself again and work on reading the books that help me in my journey with life and chronic pain and focus on meditation again.  I love the quote above because maybe loneliness is not a horrible thing.  Maybe it is our souls way of letting us know we are not giving ourselves the attention that only we are able to give ourselves.

All Pain is REAL

My family and I watched the movie last night entitled: “Alexander and the Terrible Horrible No Good Very Bad Day” starring Steve Carrel.  The movie is based on my favorite children’s book and I was extremely impressed by how funny, witty, and thought provoking the movie turned out to be.  I honestly cannot wait to watch it again.  I had a terrible, horrible, no good, very bad week for the most part and the reason was due to pain, however it was not due to chronic pain.  That sentence may only make sense to those who also suffer from chronic pain.

One of my main tools for managing pain naturally is not talking about it.  However, for this post I must point out where exactly my chronic pain is located.  Because of my bike accident and subsequent brain surgery my pain is located in my face, head and neck.  I had many surgeries to “cure” my chronic pain before I began managing it naturally which only made my chronic pain that much worse.  However, this week I had my first real back ache.  Of course, I have had back issues since my accident but not chronically.  The worst of my chronic pain has always been in my face and head.  For over ten years, while I was searching for a cure to my chronic pain I took many medications, was at the doctor’s at least twice a week, and lived my life on the search for a cure for my invisible illness.  I never slept because the pain was too intense and over the years as each doctor, medication, and surgery did not relieve my pain I became depressed, agitated, angry, and began to isolate myself because I could not deal with being around anyone, even my family because pain had totally took over my entire existence.  Jessica and Pain were one of the same.

When I did hit my rock bottom and truly was at my worst: living in Boulder Colorado, not going to school, seeing doctors constantly, drinking all the time with friends, and crying day in and day out I finally went to the Mayo Clinic in Minnesota.  I unwillingly entered a program called the Pain Rehab Center where I learned how to manage pain naturally.  To this day I utilize the tools I learned there and have found a fulfilling life despite pain.  When I first entered the program I was pissed, and more depressed than ever.  No one looked sick.  Then again I did not look sick either but at the time I was so focused on my pain I could not imagine anyone else feeling as terrible as I did.   At that point I thought my pain had to be visible because it was all I could see.   There were about twenty people in my group and all had chronic pain but no one was talking about their pain.  Some people were laughing, walking around, reading, playing board games, emailing friends as I sat there thinking: “This is crap.  I could never be able to read or email a friend because my pain is way too much to bear.  It is hard enough to sit in a chair much less laugh with people I do not know.”  I wanted to quit.  My dad being my voice of reason urged me to stay in Minnesota and give the program a chance.  A few days in I began to hear people’s stories.  Turns out everyone did have chronic pain but no one had had brain surgery or pain in their face and head.  Some people had chronic back pain, fibromyalgia, phantom leg pain, migraines, etc.  I always thought having any kind of chronic pain other than my own would be better.  Having chronic pain throughout my face and head was and can still be torture.  I thought back then if I had back pain or phantom pain I could at least read or do this or that.  I learned this week how wrong my thoughts back then were/are.

I am not sure why I have had a back ache this past week.  I came down with a stomach virus just yesterday as well so maybe they are correlated but I really do not care why my back hurts.  I learned a long time ago that trying to figure out why something hurts will only bring more attention to the pain.  This is not always a good thing and as a disclaimer I would like to say that it is always important to not ignore pain or any ailment for too long as there are times something could be seriously wrong.  However, I knew nothing was life threatening and I was just coming down with something and/or had over worked my muscles through exercise or just not taking enough breaks.  However, severe back pain is awful!!!!  I had insomnia for over three nights.  As I was laying in bed those nights that turned into mornings I remembered all those in the Pain Rehab Center with me.  I was a hypocrite at the time.  Pain is pain.  Chronic pain is chronic pain: visible or invisible.  Now I know what severe back pain feels like and it is just as bad as my chronic pain is: just in a different area of my body.  I am thankful to not have chronic back pain and as it is slowly going away I am grateful.   All of us who have chronic pain have critics within our life and those who are not in our life.  Many people do not believe our pain.  There is a huge stigma related to invisible illnesses.  I have been writing for over three years in hopes to help those with chronic pain and all invisible illnesses for that matter.  We need to stick together.  Does it matter where our pain is?  Chronic pain is an invisible illness that affects our lives in more ways that I can count.  Why even ask another where someone’s pain is located?  I learned this week after days of severe back pain that that pain was no different than when I was in the wraths of hell with my chronic pain which is located in my face, head, and neck.  There is enough judgement surrounding chronic pain.  Let us never judge one another who understand chronic pain.  Pain is pain and we need to be a support system not a group of individuals trying to figure out whose pain is worse than someone else’s.  Do not forget the three most important words to say to one with any invisible illness: I BELIEVE YOU.