Being Judged Because of Chronic Pain

 

“And sometimes I just need to be alone; so I can cry without being judged, so I can think without being interrupted, so I don’t bring anyone else down with me.”

I was recently asked a question if there had been a time in my life where I had been judged because of my invisible illness: chronic pain.  This question was not difficult for me to answer not because I could not think of a time where I was judged for chronic pain but because there have been so many hundreds of times I have been judged due to this invisible illness I could not think of just one.   Even as I write that sentence moments, days, times of judgement and pain run through my mind like a never-ending waterfall of emotions that I cannot believed I survived.  Not only survived but thrived…….eventually.

Following my bike accident and subsequent brain surgery due to a blood clot and TBI (Traumatic Brain Injury) I had half a shaved head, a swollen face, bruises, and scars that took years to heal. I was only thirteen going into the Seventh grade at a new school and three months of recovery was not enough physically or emotionally.  Being the new girl at the age of thirteen is never easy for anyone much less for someone who’s appearance was very scarred.  I was made fun of daily, judged by every classmate except a few friends who are still my closest friends and eventually started eating lunch in the bathroom stall just so I would not feel judged and alone.  Sometimes it is lonelier being around people than it is to be literally alone, which is the loneliest feeling there is.  By 8th grade my hair had grown back for the most part and all of my visible scars had either healed or were hidden.  I tried to fit in by buying the clothes my peers wore and buying the best Acne face wash and slowly I began to make friends.  People no longer made fun of me because I looked: “normal.”  I was young and I had friends to sit at lunch with and people started to like me, the real me, not the outside version.

I had a good year but that did not last for very long.  High School came faster than I could imagine and the physical pain I had felt since my bike accident began to become more consistent and more painful.  I started to get bullied again by certain peers because I was constantly rubbing my face and head without even realizing I was doing so.  The pain was/is located in those places and I was trying to massage to pain away without even knowing what I was doing.  Other people noticed and I was once again made fun of: the freak who rubbed her face all during school.  It was almost like a tic that I could not stop because the pain was slowly but surely taking over my life.  It was around this time that I started my ten year search for a cure to a disease I had never heard of: chronic pain.  I was then judged for making up my invisible illness.  I missed school a lot and spent hours upon hours in doctor’s offices and none of my peers believed me because I looked ‘fine.’  People just thought I wanted attention.  I began to isolate myself from people because it was emotionally painful to have the few people I loved and trusted not believe me because my illness was invisible.  Then I was the girl who was constantly cancelling plans and “lying” about being in pain.  I felt depressed, guilty, and began to believe I was going crazy as no doctor or specialist could help me.  I brought people down and I was not fun to be around.  I did not even like being around myself much less exposing the people I did care for to a version of me that was not me at all.  I was pain: pain was me.

I spent the following ten years being judged because of my invisible illness and even once I hit my rock bottom of pain and ended up at the Pain Rehab Center at the Mayo Clinic and learned how to manage pain naturally, I still was judged.  I was judged by many people for how I lived when I was fighting pain, searching for a cure, and numbing my pain by drinking with friends and then I was judged for living a healthy lifestyle that had little in common with my former life.  I was exercising, practicing meditation, eating well, and no longer had any desire to numb my pain or party with friends.  I lost tons of friends because of my transformation.  I get judged to this day for my lifestyle.  “Why do you need to work out?  You are so tiny as it is?!”  “You never go out and have ‘fun’ anymore, you used to be the life of the party!”  I do not know if it is age or wisdom, but those comments do not bother me at all anymore.  I like me.  There is a beautiful quote that says: “Wisdom is nothing more than healed pain.”

What I have learned over the years is that people are always going to judge you no matter what you do so you may as well do what makes you healthy and happy.  I, personally do not judge others for their actions as I know we are all fighting battles the world may know nothing about.  I will say something if I see someone being judged for their actions, if I have the energy that is.  I have also learned that the more a person judges another, the more unhappier he or she is with his or her own life.   As Abraham Hicks says: “People will love you and people will hate you and none of it will have anything to do with you.”

Planning a Life Around Pain

“Understanding the challenges you face with your illness and then planning a life despite them, may be one of the bravest decisions you will ever make.”

Unknown

The ups and downs and spins and twirls never truly end when you live with an invisible illness such as, chronic pain.  It took me ten very long, painful, heartbreaking, gut wrenching years of my life to come to a point of acceptance of my invisible illness.  It was not until then that my dreams slowly but surely began to come true.   However, I have to plan my life around chronic pain.  Now, this is not such a terrible thing and with a lot of dedication can be done and one can make the life they desire no matter what illness he or she has.  A month ago I was given the greatest news of my life since the birth of our healthy daughter, Kayci.  I am sure many of you who know me can guess what that news is but I am still waiting to share it with the world.  With this amazing, life changing, news that I have worked towards for two years now has come with some changes in my daily life and how I manage pain naturally.

When I set my mind to something, I do not give up.   That is one of the biggest blessings I received from a diagnosis of chronic pain.  I know that if I am strong enough to manage chronic pain naturally and live a life I am for the most part happy with, I can do anything.  I have to want something so badly that  I do not go a day without thinking about it to put in the effort, faith, and work it takes to make what I want come to fruition.  It may sound silly to some but one of my biggest and most beneficial tools to managing chronic pain naturally is exercise.   Exercise not only helps my pain levels but my anxiety as well.  In order to keep my dream safe, I have been told by my amazing doctors that I  should not work out for now as I just got over being on bed rest.  It has now been over a month since I have been allowed to exercise and it has taken a toll on me.  However, I keep reminding myself of one of the greatest quotes I have ever heard: “At times you must give up what you want now for what you want the most.”  It has been an adjustment but I just have to plan my life differently for now just as I have done with my management of chronic pain.  I have had to find different things to do in the morning when for thirteen years I have gotten up and worked out right away to keep my brain to going straight to pain and to get my body moving.  I started a gratitude journal six weeks ago where I write down five things I am grateful for each morning.  I have had more five am snuggles with my beautiful daughter and spent very real time with her just talking as the sun comes up.  I am trying hard to practice more yoga nidra and meditation.  I am finding other ways for the time being to manage chronic pain and re-arrange my schedule to keep my dream safe and sound.

Whether or not you have an invisible illness, there are going to be times when life does not go as plan and random road blocks are going to stand in the way of what you desire.  You have to keep going and find different routes and avenues to take to get to where you want to go, to make your dreams come true.  “At times you must give up what you want now, for what you want the most.”  I have used that quote in my management with chronic pain when pain is so difficult I have a small desire to go back to pain medication and I use it for other life changes that arise in my life.  I believe in all of you and all of your dreams.

The Benefits of Not Pushing Pain Away

“If we stay present with the rawness of our direct experience, emotional energy can run through us without getting stuck.”

-Pema Chodron

I took this picture of my four year old daughter this past Sunday as she was watching the world go by in the comfort of our den.  I spent a great portion of my own childhood in the home that my family resides in now.  My grandmother who has become an angel helped raise me in her home along with many other family members.  I have so many amazing memories in the home I spent so much of my childhood and am now raising my own family in.  With great memories come some difficult ones as well.  I had fear of abandonment growing up and this fear manifested inside me into adulthood partially because of chronic pain and partially because I repressed so many painful memories and just pretended nothing bad ever happened to me.  To be quite honest and for those who have chronic pain will understand this, once I had my bike accident in my young teens that resulted in brain surgery subsequent chronic pain, my invisible illness took center stage in my life.  I was in therapy to learn how to either find a cure to pain or manage it naturally (pending on the time period in my journey with this invisible illness) not deal with the issues I had faced in childhood.  The same window my daughter is looking out of with sparkles in her eyes is the same window I sat at waiting for my dad to arrive home from work the days my Grandmother (La La) watched me.  He worked extremely hard to take care of me, provide for me, and be the best dad in the world at his very young age.  I used to cry each and every time I went to a different family member’s home or someone watched me that was not my dad.  He was my one constant in life and the one person I knew would never abandon me.  The mornings he left for work and I stayed with my La La, I would run from window to window of the home I reside in now listening for the beeps from his car and his waves goodbye.  I knew deep down that he would always come back but as an adult looking back I can now see there was some deep rooted fear that he would abandon me.  I remember one time he went away on a business trip and had to fly to get there as it was too far away to drive to.  On the day of his return I was staying with my Grandfather, Pop Pop and I watched the news for hours making sure no planes had crashed.   I never want my children to have the fear of abandonment and I make sure my daughter knows that I am her constant and she never has to worry about mommy not coming home.

That fear of abandonment only intensified with chronic pain.  I spent ten plus years searching for a cure to chronic pain: surgeries, medications, procedures, massage therapists etc etc .  The times I was not isolating myself from the world because I was in too much physical and emotional pain to face anyone, I was trying to fit in with my peers by drinking with them but to an annoying point where I wasn’t fun to be around.  I always ended up being the ‘crying drunk girl’ by the end of the night because all I could think about was pain and alcohol, as much as it did numb my pain for a brief time only caused me to focus more on pain and increased my already depressed mood.  Over time, people just stopped wanting to be around me and/or I stopped wanting to be around anyone but myself and my pain.  I wish I knew in my teens and twenties that the people who truly love you will never abandon you: chronic pain or no chronic pain.  I still have the same two best friends I have had since I was in my young teens and they have both stuck by me through chronic pain and the ups and downs of my journey.  They both are two of my biggest fans and are very supportive of my choice to manage pain naturally and follow my dreams of sharing my story to save others and to have children and extend my family: two things I truly believed chronic pain had stolen from me.

I am facing a joyous yet trying time right now and I will share what that is in due time. I am currently on bed rest for a week and once again forced to let go of many of the things I use to manage chronic pain, forced to deal with my thoughts, and cannot constantly distract my mind from this yin/yang experience I am going through.  I will say this: the good of what I am facing outweighs the bad in more ways than I can express.  I am grateful for the blessings that are coming into my life despite the difficulties that sometimes come with our truest dreams.  I do not want my emotional energy to get stuck as it has in my thirty plus years in this world.  I do not want to dwell on my problems but I also do not want to resist them.  I must acknowledge and accept what I am facing or problems will manifest deep down in myself and come out at a time when I do not want them to or expect them to.  It took acknowledging and accepting chronic pain without resistance to finally find peace and happiness.  That is a huge lesson I learned from my journey with chronic pain and now need to utilize in the other parts of my life.  Pain does not define you and there are many life lessons we can and will learn if we allow ourselves to be open to the possibilities of non-resistance.  Anything we bury down deep and try to repress will get stuck and I have learned that in order to have a peaceful, happy life we must not repress our feelings or emotions especially those of us with chronic pain.  Personally, the more I repress emotional pain, the more physical pain I am faced with.

 

People’s Reaction to my Invisible Illness

“When I loved myself enough I began leaving anything that wasn’t healthy.  This meant people, jobs, my own belief’s and habits-anything that kept me small.   My judgment called it disloyal.  Now I see it as self loving.”

Unknown

I have had a multitude of various reactions from people when I tell them I have an invisible illness: chronic pain.  I never tell people for pity or praise, I only tell them because they ask me what I write about.  I have yet to meet a person with chronic pain who enjoys being pitied.  It is bad enough when we, as individuals get in self-hate or self-pity mode, but to watch others pity us is just agonizing.  I was asked yesterday during my daughter’s dance class what I wrote about and my story regarding my bike accident.  The woman whom is beyond kind was genuinely interested and even asked me to send her a link to my site.  She had one of the greatest reactions to my story that I have ever encountered from a person who had no idea I lived with chronic pain.  She stroked my hair but not in a “I feel bad for you” way but in a way that said: “You are amazing.”  It is very hard to explain but sometimes gestures and eye movements are more meaningful than words.  She was one of the first people who genuinely wanted to read about my story and ask me questions that did not make me feel uncomfortable or different from anyone else in the room.   There was no pity in her eyes, just empathy.

I showed her a picture of myself when I was at my rock bottom in my journey with chronic pain.  It is very similar to the before and after picture seen above.  A lot of people who have met me in the past ten years do not believe the Jessica on the right in this picture is truly me.   I can promise you all that it is.  Chronic pain was at it’s worse and I had already gone through every doctor, specialist, surgery, and medication to try and cure my relentless pain.  Nothing worked.  Ten years of searching for a cure can really suck the life out of a person.  The only thing that actually numbed my physical pain for a brief time was alcohol.  I ate horribly, drank with my friends on a nightly basis, and spent the days crying in bed.  Pain had completely taken over my life: body, mind, and soul.   I look at the picture of the Jessica who was falling apart due to chronic pain and I sincerely do not recognize her.  My friend from my daughter’s dance class asked me if I feel like I am still that person seen above and I honestly feel no identification to that Jessica at all.  Chronic pain changed me, how could it not?   For the first ten plus years in my battle with chronic pain, this invisible illness changed me for the worse.  I do not hate the Jessica I once was because I was doing the best I could with the cards I had been dealt.  I was so unhappy I thought about ending my life more times than I care to remember.  I may have been bigger on the outside but I was totally hollow on the inside.  The Jessica I found through the help of the Pain Rehab Center at the Mayo Clinic is the true Jessica seen on the left hand side of this picture. She is happy.  I wish I could say chronic pain finally went away or I found that magic cure but I did not.  I found a way to manage pain naturally and work my ass off on a daily basis in order to never feel the way I felt fifteen years ago.

It took me a long time to love myself.  After my bike accident I hated chronic pain but I did not hate myself.  After years and years of searching for a cure and becoming hopeless and a total mess inside and out, I began to hate myself along with the pain.  I empathize with the Jessica seen on the right hand side of this picture and wish I could give her a hug and tell her everything would be okay one day.  I would never have believed the older Jessica but I would still love to give that younger pain filled Jessica a hug.

The friend I have made at my daughter Kayci’s dance class embodies a presence of love and empathy and I truly hope that with my stories and writings people begin to see how a person with an invisible illness wants to be treated.   She made me feel good and she clearly knows the difference between pity and empathy.  That is a rare quality to find in a person and I am very happy to have bonded with her as I have.

 

Self Reflection and Chronic Pain

“If you suffer it is because of you.  If you are blissful it is because of you.  No one else is responsible, only you and you alone.  You are your own hell and your own heaven too.”

Osho

I have had a few days where I have had to leave my comfort zone and just relax and rest.  If you know me, I am not a fan of resting and being still for too long.  I am the definition of an over thinker and having an invisible illness such as chronic pain has only intensified my roller coaster of thoughts.  After ten years of searching for a cure to chronic pain and finally finding a way to manage pain and live a life that makes me happy, it is very difficult for me to step away from the routine I am so accustomed to.  My day usually begins around five in the morning with stretches and exercise.  Of all the tools I use to manage chronic pain, exercise is definitely one of my favorites and most useful.  It helps with my chronic pain and my subsequent anxiety.  I stay busy throughout the day which is quite easy to do with a four year old daughter, work, and running a home that I am proud of.  My other favorite tool for managing chronic pain naturally is the utilization of distractions.  I train my brain to not think about pain and am usually quite successful in this exercise.  However, for the past few days I have been forced to rest in bed which on one hand has been very difficult.  I want to play with my daughter, run my errands, make dinner, and finish the damn laundry that has been sitting in the laundry room for two days.  I do not enjoy being vulnerable and relying on other people to help me and do things for me.  I begin to feel guilty, frustrated, and the little control freak buried inside me comes out in the silliest ways one can imagine.  For instance, I find it difficult to walk into my daughter’s playroom because I know it is not organized the ‘Jessica’ way.

On the other hand, the past few days have been a great lesson for me.  I have had to let things go and find distractions that have nothing to do with exercise and/or activity.  I have caught up on my favorite television shows, books, and even went back to my gratitude journal and began doing the exercises that are found in the book.  The book is entitled: “Simple Abundance” by Sarah Ban Breathnach.  I have read the book but have never attempted to truly do the workbook that accompanies this very inspiring book.  The first three assignments were quite simple for me.  I was asked to write down fifty things I am grateful for: things from having food in the fridge to being blessed with a beautiful, happy daughter.  The second was to write down the five things I want in my life more than anything.  Number one on my list was to have more children: no brainer there.  The third exercise was to write down the things that I wanted to work on within myself to find more inner joy.  Ironically, this was the easiest exercise the workbook asked of me.  I wrote down so many things that I ran out of room  the page allotted  me.  Sadly, the fourth exercise was much more difficult than I thought it would be.  The exercise asked me to write down five things or more that I loved about myself: my gifts.  I came up with two right away: empathetic and funny.  I even felt a little guilty writing down funny.  It took me longer to find five things I am sincerely proud of about myself then it did to find fifty things I was grateful for.  No one else needs to read my simple abundance workbook so why was I so hesitant to write exactly how I do feel about myself?  Yes, there are things I want to work on and am working on but there are more than two things about myself I am proud of.  However, I felt some sense of ridiculous guilt putting them down on paper.  I learned that I need to own the things I feel good about regarding myself and my life.  I have worked hard to get where I am especially with chronic pain.  I have a lot to be proud of and should not feel ashamed for feeling good about those things in my life.  I focus more on the things I need to work on than the goals I have already achieved.

I believe this to be true: no matter where we are in our journey with chronic pain or life in general, we should be more focused on our gifts than our downfalls.  The more we focus on the good in ourselves, the easier it will be to work on the things we know need some help.  None of us are perfect and chronic pain makes life incredibly difficult at times but we all have special gifts that we need to start putting more focus on.

 

 

 

 

 

 

The Tears of Pain

“I can explain it to you but I can’t understand it for you.”

Unknown

The topic of crying and chronic pain came up recently and the  question was asked: “Do you remember the first time you cried about your invisible illness, chronic pain?”  I racked my mind for days upon days trying to think of the first time I cried about pain and there are too many memories of overwhelming tears because of my invisible illness to even come close to remembering the first time I cried because of chronic pain.  I do not remember if I cried after I fell off of my bike in my early teens, resulting in brain surgery and months of recovery from my accident.  I am sure I did, I’m not superwoman but I have no recollection of being depressed or sad during the months I spent recovering from my fall.  To be honest I only remember good things: family members and friends visiting me, expressing their love and gratitude that I was alive and would be okay; flowers, cards, balloons, and gifts of all sorts; overwhelming amounts of attention and an outpour of affection from those I love the most in the world; and a calm sense that I had come very close to death and made it through something most people can never even imagine happening.  I remember fear but I have no recollection of sadness.  Granted, I was hooked up to machines and given many drugs for pain so I am sure that had a lot to do with it but I honestly remember peace and gratitude above all else.  My tears and heartache did not come until way after my accident when the invisible pain crept in like a robber in the middle of the night stealing much more than any personal belongings, this robber (also known as chronic pain) was stealing my life: something money cannot buy.

The first time I remember crying because of chronic pain was my junior year of high school.  I was sitting in social studies and one of my peers asked me why I was rubbing my face.  I had no idea I had been rubbing my face.  I later learned that massaging my face and head as I did, and sometimes still do is called a pain behavior.  A pain behavior is anything that brings attention to your pain.  I honestly had been rubbing my face and head for so many years that I had zero clue when or where I was demonstrating this pain behavior.  When one of my peers pointed it out in front of everyone in my class, I was mortified.  I had no answer.  I had never heard of the term chronic pain and had no idea why I was in pain.  I went home from school that day and swore I would never massage my face again but one hour later I was cognizant of the fact that as I was trying with all my might to do my homework, I had one hand on my face.  I ran up to my room in a fit of tears, scared as to what was happening to my body.  It was at that moment I believed I was going crazy.  That thought would last for the next ten years.

The second time I truly remember crying was in my freshman year of college.  I was in denial that I had a serious illness despite the fact that it was not visible and was trying to do it all.  I was trying to balance my first year away from home, a full schedule in school attempting to get straight A’s, and searching for a cure to the pain I was feeling.  I was either found behind my computer, taking breaks to cry in my bunk bed because  pain was taking me away from concentrating on my books or computer; in doctor’s offices getting various surgeries and or medications, or out with my friends trying to numb my pain by way of drinking.  I never told people I was going to the doctors or having surgery.  I thought my friends would think I was crazy.  With each medication, treatment or surgery my pain only got worse.  As my pain got worse, my depression and anger intensified until I could no longer take school, relationships, or doctors.  I spent my days crying in bed wishing I had any other life than the one I had.

I ended up going to the Mayo Clinic in Minnesota where I spent three months seeing every doctor the facility had to offer.  I had about four doctor appointments a day.  I spent those months in a hotel room becoming more and more distraught as nothing worked.  One day, my main doctor there called me and asked me to come in for a meeting with himself and his nurse.  I could hear, by the sound of his voice that nothing good was going to come of this meeting.  As I took a bus to the meeting, I felt as if I was walking down my own death row just waiting for my sentence of life to be over for good.  The Neurologist explained to me that I had a condition called chronic pain that was most likely correlated to my bike accident that happened in my young teens.  This was the very first time I had heard the term: chronic pain.  What he said next took my breath away.  He said: “Jessica, you have chronic pain and unfortunately there is no magic cure, medication, or surgery to take away your pain.  However, there is a program here at the Mayo Clinic called the Pain Rehab Center that helps people with chronic pain learn how to manage pain naturally and teaches people how to live a fulfilling life despite pain.”  I was in SHOCK.  I remember screaming through copious amounts of tears: “NO, NO, NO!  I will not accept pain.  I would rather die than live in pain the rest of my life.  I hate you.  I hate pain. I hate my life.  Why me??  I did not come here for this!!! I came here for help!!!  Pain had destroyed ten years of my life and you want me to live with pain?!  Hell no!”  I stormed out of his office and when I looked back through my tears I saw that the nurse was crying as well.  I went back to my hotel room and laid in bed for days.  I did not cry.  I was numb.  I did not get out of bed for anything, not even food.  I laid in the dark with no television, curtains drawn, willing myself to sleep but pain and anxiety had taken over my entire body.  I was done.  Days later I finally accepted a phone call from my dad who begged me to consider going into the Pain Rehabilitation Program.  I would have done anything for my dad and I finally agreed to go.  I will never forget the days I spent in that dreary hotel room laying in a bed millions of other people had laid in wishing my life away.  That is pain.

If you have read my story you know that the Pain Rehabilitation Program saved my life.  Yes, I still have chronic pain but I no longer allow it to control my happiness.  There are certain times I am more aware of pain than others but I have been managing pain naturally for years and although I do not have the life I had planned exactly, I have a life I am proud of and grateful for.  I think there will always be times I cry because of chronic pain but the tears do not last and I am very happy for the most part.  No matter how hard I try and remember the first time I cried because of chronic pain is like asking me what happens after we pass, I have no idea.  I spent over a decade in tears and am just very grateful that pain no longer has that power over my life.

 

 

 

 

 

 

 

 

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.

My Three Lives in Pain

“My illness isn’t really invisible.  If you look closely enough you can see how much it has changed my life.”

Unknown

My bike accident occurred when I was in my young teen years.  I feel as if I have led three different lives during my thirty five years in this amazing world.  The first thirteen are somewhat difficult to remember.  My earliest memories are with my dad taking bike rides to the park and playing kickball with my friends in our front yard.  Some great memories stick out and some terrible memories are there that I will never forget.  I was a kid with an enormous zest for life.  Despite not having the “perfect” childhood, I have more great memories than bad memories and my family did the best they could to provide me with a joyous childhood.  No one would have imagined the events that occurred during the ten years that followed my bike accident.  I remember the day I fell as if it was yesterday, down to the taste of the pink mint that I was chewing when the front tire of my bicycle got twisted with the bag I was carrying and my body went directly into a stone wall.  The damages that occurred on that day would affect the next two thirds of my life.

For the following ten years I would be a totally different person than I was during my first thirteen years here in this world.   As many of my readers know, my accident resulted in brain surgery to remove a blood clot and many other injuries that had me in critical condition for a few weeks and then bed bound for a few months.  I do not remember the pain from my surgery nor being extremely upset about losing three months of summer.  I remember fear but not pain.  I was doted on for months as everyone was beyond happy I was alive and healthy.  I received flowers, presents, cards, balloons, and because I was unable to walk up the stairs my dad gave me a bell to use whenever I needed something.  Once my scars healed and my hair grew back, I believed that my life would go back to the way it was pre-bike accident: not perfect, but happy.  I could not have been more wrong.  Brain surgery was nothing compared to the pain I would endure for the second portion of my life.  I looked pretty much like the Jessica I had been before my fall except for all the fun things that come with puberty like pimples and oily skin but I was in more physical pain than I had ever endured; the difference was that the pain was no longer visible.  I can remember the exact moment I began noticing the pain.  I was sitting in my Seventh Grade Social Studies class and a classmate asked me why I was rubbing my face and neck.  I had gotten so used to massaging the pain I felt that I started doing it constantly.  For the next ten plus years I would search for a cure to chronic pain.  The term chronic pain was not used during this time and every doctor and specialist I saw was mystified by my condition.  I was miserable, confused, in pain, and filled with a desperation for relief that no words can describe.  I tried everything to the point that if someone started a question with the words: “Have you tried……” I would stop them before they could finish because I truly had tried EVERYTHING.  Fast forward a few years and despite my huge passion to get my college degree, I dropped out after two and half years and drove to Boulder, CO to drown my pain in partying with friends.  I was the fun girl who was always up for having drinks or taking random road trips to Vegas.  I surrounded myself with people who loved to drink and party so that I could finally “fit in” with people as I had during the first third of my life.   I was the life of the party on the outside but inside I had never been more unhappy.  I came to a point that I not only hated my physical pain but I hated myself.  I hit a rock bottom that was harder than the wall I fell into that started this whole mess.

My friends in Colorado began to notice that I was not as okay as I appeared to be.  I was no longer the life of the party.  I was at the party but with each drink I cried more about the physical pain no one understood, not even me.  A good friend saw that I was heading somewhere bad fast and believed me when I said I was in severe pain despite the fact that the pain was not visible.  He believed me and that belief saved my life.  I ended up driving to the Mayo Clinic in Minnesota where the third portion of my life would begin.  After two months of seeing every specialist possible and undergoing every test possible, I was told that I had chronic pain and there was no magic cure to my invisible illness.  I am not sure I have ever cried as hard as I cried when the words: chronic pain and no cure came out of this brave doctor’s mouth.  Under his guidance and advice, he got me into the Pain Rehabilitation Center at the Mayo Clinic where I learned how to manage and live with chronic pain naturally.  I went unwillingly at first but deep down I knew I was headed for death if I did not try one last thing.  The first week was brutal and I did not say a word to anyone.  Then something clicked.  I started listening to the people around me whom also had chronic pain.  Their pain, like mine was mostly invisible as well.  I was no longer alone.  Chronic pain does not discriminate and I became close to people I never would have talked to because despite races and age, I had more in common with the people in my chronic pain group than I had with anyone in the world.  My entire life changed during the next three months.  I learned how to live with chronic pain and manage it without medications or treatments.  I began to live again as opposed to merely surviving.  I was alive.  I stopped hating myself and began to embrace life and follow my dreams.

I was petrified to go back to Colorado and wanted nothing to do with the lifestyle I had been living there.  I was healthy.  I had learned that I could be a healthy, happy person despite chronic pain.  However, I had to change my entire lifestyle.  I was exercising, eating healthy, reading again, writing, and wanted nothing to do with drinking or anything that could affect my chronic pain management routine.  I lost a lot of friends.  I was not the same Jessica I had been prior to going to the Mayo Clinic.  I went from being the life of the party to the girl who was in bed reading by eight o’clock and awake by five am exercising.  I was one of the most “boring” twenty-two year olds in college.  No one understood me and I was asked constantly to go to this party or that party but I had to say no even though I knew I was losing the group of friends I had once counted on to get me through the night.  I had to be selfish.  I had to focus on my health.  I spent a year in Denver, Colorado practicing the techniques I learned at the Mayo Clinic every day of the week: no exceptions.  I needed that year to totally focus on my health and my new way of living.   I then went back to school in Denver, CO and did get my college degree in Social Work.  I loved learning how to help people so much that I ended up graduating at the top of my class and once I stopped resisting pain, everything began to fall into place.  I am now thirty-five years old and there have been bumps in the road in my journey with chronic pain but nothing like the life I led for the second half of my life.

If you have chronic pain I want you to know that you are not crazy and you are not alone.  I spent a third of my life living in hell, wanting to scream and cry every second of every day.  I wanted to tear my entire face and head off just to get rid of the pain.  I did not have hope because I knew no one who understood what I was going through.   There was no light at the end of the tunnel.  I understand that you may be in the worst possible place mentally and physically but I need you to have hope.  There may not always be a way out but there is a way through.  I promise you.  If I can live a happy life despite pain, anyone can.  Don’t worry, I probably would not have believed myself either if I read this fifteen years ago but at least know that there is a light at the end of the tunnel and the light is very bright.

 

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.