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.”

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.

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.

Working With Chronic Pain: My Biggest Mistake

Where do I go when I am faced with life’s biggest questions or when I am in the middle of an invisible argument going on inside my mind: the beach.  I am able to think and find my answers to life’s biggest struggles when I am right in front of the ocean. We live about fifty minutes from the Jersey shore and it remains my place of peace and where I go when things in my life seem to be unravelling.

My biggest fear when I left the Pain Rehab Center at the Mayo Clinic in Minnesota was how I would be able to work with chronic pain?  I truly did not believe I would be able to be a social worker when I was managing pain naturally and had this intense routine I followed daily to manage my pain without it managing me.  I spent about six months or so not working once I left the Mayo Clinic and used this time to truly focus on my health and management of chronic pain.  Every day I followed a schedule and eventually I did not focus on my pain as I once had and happiness started to truly enter my heart and soul.  I felt alive for the first time in twenty years.   I was exercising, practicing meditation twice a day, taking walks, reading, and finding all the things I thought I had lost because of chronic pain.  It was the happiest I had been since I had fallen off of my bicycle in my young teens.  I was thriving despite chronic pain.

However, I was a college graduate with my degree in social work and knew I had to start applying to jobs in my field after my six months of getting my chronic pain under control.  I was terrified.  I knew I could not do a forty hour week but I needed health insurance so I had to make sure I worked at least thirty-two hours a week.  I was so afraid that work would take away all the progress I had made in my management of pain.  I went on an interview at a place called Senior Care which was a medical facility that had patient’s who suffered from Dementia, Mental health issues, Cancer, Autism: you name it.  The job seemed amazing and I loved the facility.  During my interview, I was honest with my soon to be boss and explained that I had chronic pain but was managing it naturally.  I told him that I would need about two breaks a day and he was very impressed with my honesty and how I managed chronic pain as many of my soon to be patients also had chronic pain.  He then began asking me questions on how I managed pain and if I would be able to teach some of the patients the techniques I used such as meditation.  BINGO!!!!  I was pumped.  I wanted to just tell my future boss that I would take the job and start the next day but then fear crept in and I asked him if I could have a couple days to think about the position.  The following day I drove to the same beach seen above by myself with my meditation CD’s, my books, and my journal.  I sat on this very same beach where years later I would be holding this precious daughter of mine and just asked the Universe if I should take the job or not.  My intuition was so strong that I really did not need to ask anyone their opinion.  I knew I wanted this job and after eight hours of sitting on the sand in my favorite place in the world I drove home and called my soon to be boss and took the job.  My intuition was right on point and I loved my job.  I was able to incorporate my chronic pain management tools into my career,  I was helping people and making a difference, and I was proud of myself.  It was the greatest job I have ever had so why did I leave?

One downfall of my job was that I made very little money and my health insurance was pretty bad.  Out of the blue one day, I received a phone call from a different facility asking me if I was interested in interviewing for the Director of Social Services at one of the most famous nursing homes in our area.  The Director was offering about twenty thousand dollars more than I was making and my ego took over and I agreed to be interviewed.  I was managing pain amazingly, I was in a great place: mind, body, and spirit so I thought: what the hell, may as well at least go for an interview.  Here is where I made one of the biggest mistakes in my career: I took the job despite my strong intuition to stay where I was not making a lot of money but I was healthy and happy.  I gave my two weeks to my dream job and began working as the Director days later.  By the end of my first week at my money making, high profile social work job I knew I had made a HUGE mistake.  I was working over forty hours a week, no breaks, no time with my patients, no time to incorporate my chronic pain management tools, and my self esteem began to spiral downwards as my pain began to increase by the day.  I was miserable, filled with regret, and in tears every night of the week.  Weekends were no longer fun because I was no longer taking care of my health five days a week because I chose money over my health and happiness.  Within a year of my twenty thousand dollar mistake, I found out I was pregnant and gave my two weeks notice.  My boss was not a huge fan of me anyways as he told me on a daily basis: “Jessica, you are just not a good sales person.  We need our numbers up.  We need more people who will pay privately.  Your focus needs to be on our facility.”  No, I am not a good sales person, I could not agree with this person more.  I was a social worker.  I hated sales, I hated shopping, and I went into social work to help people not make a business money.

Chronic pain has taught me more lessons in my life than any other ailment or event has.  This was another hard lesson I had to learn.  If I could go back in time, I never would have chosen money over my health and happiness.  I would have followed my intuition and stayed in the job where I was making little money but I was not only making a difference in my health but the health and happiness of those I worked with.  I did not go to the beach seen above when offered this twenty thousand dollar mistake.  Lesson learned.  There is nothing in this world that is more important than your health and happiness.  If you are lucky to find a job in which you are able to manage your invisible illness like I was able to find, do not leave no matter what!  Do not make my twenty thousand dollar mistake.

 

Anxiety and Chronic Pain

I have yet to meet a person who has chronic pain but has no anxiety symptoms as seen above.  What came first: chronic pain or anxiety?  I believe for everyone this is different and I am not a huge fan of the: what came first: the chicken or the egg theory anyways.  In the end, who cares?  You have chronic pain and you are dealing with the dreaded invisible illnesses that hop on board with the relentless pain you are already facing.  I personally know that I have had anxiety problems since I was a child.  Even at the young age of six I worried about everything.  I remember nighttime being the worst because I was never able to turn my young mind off.  I worried about things that were in my reality and things that no child or adult should waste their time thinking about.  My dad once took me to my pediatrician because I had such problems with insomnia: I was nine!  My bike accident happened in my young teens which resulted in brain surgery and a life with chronic pain.  Chronic pain did not help my anxiety at all.  I have written this before but I fully believe this to be true: the fear of pain is often times worse than the pain itself.  I no longer look for a cure for chronic pain and manage pain totally naturally.  However, I still have some difficult days or nights but they do not rule my life by any means.  I over did things yesterday and was overly anxious and paid the price last night as I watched The Bachlorette and later read.   However, I do not fear pain but I do find myself fearing anxiety.

There is no doubt that anxiety increases my pain levels and this goes for everyone.  People without chronic pain get headaches, back aches, and stomach aches when overly stressed or filled with anxious thoughts and worries.  If you are already living with chronic pain, there is little doubt in me that anxiety, when heightened will lead to increased pain levels. I have been working on managing my anxiety for thirty years and the one good thing I have learned is that a lot of the techniques I use to manage chronic pain also help with my anxiety management: exercise, breathing exercises, yoga, meditation, yoga nidra, healthy diet etc.  I cannot believe I am writing this as I never thought I would be able to manage pain without a cure or medication but managing my anxiety is more difficult than managing chronic pain.  Wow, just writing that fact is shocking to me.

Anyone that has anxiety knows how difficult it is to live with this very real invisible illness.  Just like chronic pain or any other disease, one cannot understand the true feelings of anxiety unless on lives with this chronic condition.  I awake most mornings with a huge amount of anxiety and most days I can jump up and just start my routine but there are some days that it takes a ton of will power.  Anxiety, like chronic pain can truly take over one’s mind and then body if we allow it to.  People may say to you: “You worry too much, everything works out.  Just calm down.”  Most of us, myself included know that the things we worry about always work out however it is very difficult at times to talk reason to our minds and souls when they are in a heightened state of anxiety.  Logically, we know how blessed we are and that the past has taught us worrying will never change the outcome but just like a difficult day with chronic pain there are difficult days with anxiety.  I struggle the most with anxiety first thing in the morning and at times as I try and fall asleep.  I noticed lately the more I give in to my anxieties in the morning the easier it is for me to fall asleep because I am so tired from having battles in my mind that I am not only exhausted, but have stressed myself out to the point of having a difficult time with pain.

Where is the happy ending of this battle with anxiety?  Is there an ending?  I do not know.  I only know that if I can learn how to manage chronic pain without medications or finding a cure, I can better myself in more ways than I realize.  Life isn’t about the destination, it is through the journey of ups and downs that we learn and grow.  I find it ironic that having chronic pain because of a bike accident taught me (ten years later) how I can manage anxiety the same way I manage pain.  I also find it crazy that anxiety is more difficult for me to manage now than pain.  Fifteen years ago I would have given in to both chronic pain and fear in the morning and never have gotten out of bed.  Now, at the age of thirty five I feel as if I slept super late because it is my day off and I did not wake up until eight in the morning (thank you daughter!)  Our thoughts become our reality, I do believe this to be true.  However, once we accept it is our anxiety talking and not the rational part of our minds we can at least come to a great starting point in our journey with anxiety.  We are always works in progress and I have learned more from chronic pain than probably anything in my life.  I plan to do the same with anxiety and worrying.  We just never give up and no matter where any of you are with your personal invisible illness, I know from much life experience that you are truly doing the best you can.

What do YOU WANT

“Stop going back and forth on your ideas because of fear.  You are confusing the Universe.  Decide what you want and stick with it.  You’ll notice things starting to shift in your favor.”

Unknown

My mind is a confusing mess at times and although I know the two things I want more than anything, fear and over-thinking lead my mind into crazy directions.  Being Jessica, I then over-think if the Universe is getting confused because of my beautiful mess of a mind.  I am not sure why but this morning after I practiced yoga I decided to write a letter to the Universe declaring clearly what and why I want the two things I have wanted for most of my life: children and for my writings about my journey with chronic pain to one day become my career.  I took out a random piece of scrap paper, still in my Zen mode from yoga and just wrote down exactly why I want the two things above. Right before I showered, I put the piece of paper into one of my clothes drawers and let it go.  Now, the Universe cannot get confused by my crazy mind.  Whether there is total truth to that or not does not really matter because I feel better knowing I clearly declared on paper what I want.  Sometimes just getting things down on paper is a huge sigh of relief.  We could also write down what we do not want and rip the hell out of that piece of paper for that would be liberating as well.

I believe our soul always knows what it wants but the outside world and people distort what we truly want.  We may get angry and say something we do not mean or hurt and cry tears declaring what we do not want.  But these are just feeling and as I wrote before feelings are like visitors, they come and they go.  Feelings are not indicative of what we truly want and I believe the Universe listens to our souls and not our mouths.  That puts my mind and heart at ease and I hope it does for you as well.  I do recommend (as crazy as it sounds) writing down exactly what you DO want and why and putting it away: see what happens.  If nothing else you know deep down that you have declared exactly what you want to the Universe or your God so when you get sad, frustrated, or angry the Universe knows what your soul wants and allows you to let your visitors come and go.

Pushing Pain Away: Inviting it to Stay

“If you are resisting something, you are feeding it.  Any energy you fight, you are feeding.  If you are pushing something away, you are inviting it to stay.”

Michael Singer

One of my wisest readers Kate emailed me regarding the concept of non-resistance and I want to share with you her final question on this particular email: “What made it sane for you (chronic pain) acceptance or disagreement?”  Do I want a life with chronic pain or any disease for that matter?  No.  I fought this invisible illness for ten plus years and with each fight and disagreement, my pain intensified along with my depression, anger, and eventually I faced a loss of will to live.  It was not until I stopped resisting chronic pain and accepted it as part of my life that I began to live.  I no longer wanted to die.  I wanted to manage pain in a healthy way and at times I do want to fight it but without acceptance I know for a fact I would never have graduated college, have a family, or be the healthiest version of Jessica I can be despite pain.  There are so many things in life that happen to all of us that we do not want but we are unable to change.  We can fight and fight and fight but with each battle we just bring more attention to what we do not want because we refuse to accept it.  However, once we do accept something whether we want it or not a sense of peace and the beginning of healing occur.  So, this is probably the easiest question I have yet to be asked by any reader: I found my life through acceptance: disagreement came close to killing me.

Kate emailed me again regarding her fear of “exaggerating her pain” as those with different diseases seem to manage it better and maybe she in a sense is just being “weak.”  No, you are not exaggerating your invisible illness.  Comparison is the thief of joy.  You have no idea what other people are feeling, how are they are acting, or coping with their particular illness behind closed doors.  What you and many of us are doing is overthinking chronic pain and the ailments that come along with it.  I have been around people from all walks of life with different medical issues and I will tell you right now, some of the strongest people I have ever met have chronic pain and most of their pain was non-visible. If you could turn your body inside out and the pain was visible, you would feel like a damn rock star and get the support and acknowledgement you deserve.  Never doubt your strength, compare your illness with anyone else’s, or feel that you are exaggerating your pain.  All of you can relate to Kate’s questions/fears/concerns/and doubts.  This post is for everyone suffering from an invisible illness.  I applaud Kate for her honesty and strength.  Acceptance is key.  It is the first step to the ‘healing’ process and will change your life.  Beating yourself up for being in pain is counterproductive and you deserve love: love yourself and be proud of yourself.  Saying that you should not be upset because someone has it worse is like saying you should not be happy because someone has it better.  Focus on you and your journey with chronic pain.

I am so proud of all of you that read my writings. I hope this post reaches you and you give yourself a break.  You are a rock star.

Anger and Chronic Pain

“The less you talk, the more people think about your words.”

Hi, my name is Jessica and I have a totally Type A personality, I can either talk endlessly to the point of annoyance to some or the opposite when I like silence.  I have chronic pain and used to talk about pain every second I could to my dad and very close friends.  I no longer talk about pain unless the pain is acute (aka has nothing to do with my chronic pain) but I am still that girl who talks and talks and talks.  My dad and husband love that about me: NOT.  Not going into gender stereotypes but in my experience the most important men in my life stop listening to me after a few minutes as I can be repetitive and if super excited about something will talk and talk and talk because my enthusiasm can be way over the top (I like that about me: enthusiasm) or if I am angry or upset about something will talk and talk and talk: definition of insanity.  Thank God for my girlfriends who love to talk as well, just saying. However, the above quote is so true.  Even in my own experience, at times when a person I care about is talking I start thinking about my response to his or her phrase instead of truly hearing them.  We all do that way too often.  LISTEN AND SILENT have the same letters just put in different spots: coincidence?  It as like when I receive an email from a reader or a message on my blog: one thing that I write always stands out.  Readers will not remember my random anecdotes and half of what I write but there will be that one sentence that stands out and sticks, hopefully it is a healthy sentence or idea.  Whatever helps.

The cycle of chronic pain can be a vicious one that can be spun out of control.  Stress, anger, and fighting cause increased pain, more insomnia, increased pain, anxiety, and eventually you find yourself unable to function because you made a choice (I apologize but we all do have a choice how we react to another person during an argument; I get hurt easily and feel emotional pain easily so I do not always make the right choice because I want things good/fixed now.)  I do not always make the correct choice and I argue back, talk too much, cry endlessly and over think everything until I stay up all night thinking/crying/and worrying to the point of puffy eyes and you guessed it a very high pain day the following day.  I am better at this now but practice does not make perfection, practice makes permanence.  It is something I am working on.  Therefore when an argument or stress is coming on from someone I care for, I need to take a breath and think before anything comes out of my mouth.  If I am going to say anything (and sometimes nothing needs to be said as it is sometimes better to be at peace than be right) I want that something to be meaningful and precise.  Anger is awful.  When upset with someone you are first angry with he or she but end up being angry at yourself for your reaction and taking the focus away from your health, management of chronic pain and peace.   There are some things people with chronic pain have to work on a lot more than those without this invisible illness.  This is a great thing and a really shitty thing at times.  We grow wiser at times because we need to learn certain lessons others do not in order to manage our invisible illness.

Think about the above quote today: the less you talk, the more people think about your words.

Aha moment

Judging Others With Chronic Pain

The stigmatism behind chronic pain is shocking at times.  You will find most people with chronic pain have Type A personalities and want to do everything without taking breaks.  You will also find that most people with chronic pain are perfectionists and quite hard on themselves if they do not achieve the level of “success” they desire.  Later, you will find that people with chronic pain are some of the most sensitive and empathetic persons you will ever meet. Do you know what people with chronic pain hate the most?  They hate that they are unable to do the things they love, work full time, and be the person they are inside, buried beneath all of the physical pain they did not ask for.   Nobody asks for chronic pain.  I now manage it naturally and very well ninety five percent of the time but I have “difficult days” aka days where my pain levels are high and I cannot do as much as I would like to and I have come a long way but it still angers me at times and frustrates the hell out of me.  To anyone who comes across my writings please remember this: NO ONE MAKES UP CHRONIC PAIN!  No one has any right to judge another person for how he or she lives his or her life but to judge someone with an invisible illness is quite frankly sad and shows the ignorance surrounding this condition.  People with chronic pain are not lazy, they are the opposite.  I know, I have been on both sides.  Those days where I laid in bed crying because the pain was so intense and I felt as if I was dying from within were some of the worst days of my life.  The sadness and loss I felt at being stuck inside as my friends and family worked and went to school ate me alive.  They were all following the dreams I wanted so desperately and there were times people thought I was just lazy or being a ‘baby.’ Who in their right mind would want to in pain twenty four hours, seven days a week, three hundred and sixty-five days a year?  I have yet to meet someone with that hope.  Trust me, no one who has no experience with chronic pain does not want to feel what people with this invisible illness feel every day of their lives.  The guilt is already killing them, your judgement is not necessary. I am writing harshly today but it breaks my heart when people write me about the loneliness and judgement they feel from the people they love most.

Yes, I am living proof that one can work, follow their dreams, and live a happy life despite pain but there are days or hours such as this morning where the Universe reminds me just how difficult chronic pain is: its a gift that I sometimes forget.  Anyone who does not believe you or your illness needs to be set aside so you are able to focus on your health and your well being.  Stress, depression, endless crying, and anxiety only increase pain: who knows what battles the person who “judges” you is facing himself or herself?  I believe you and I swear you are not alone.

Wishing Pain Was VISIBLE

“Not all wounds gush blood.”

Unknown

I think back to all the times I have been hurt and the wounds were visible.  Obviously, going through brain surgery definitely showed scars/bruises/and a deformation of my body for about a year.  I had long brown hair as I do now and half of it was shaved off.   At the time, being in my young teens I thought this was the worst thing ever.  Catheter ok, feeding tube…sure, broken bones…cool but MY HAIR!!!!  When I fell off of my bike I landed on my right side: my right side of my head hit the stone wall as did the rest of my body.  After they removed the blood from my brain on the right side, the left side of my face blew up like a huge balloon.  The three vivid memories of that day are walking home from my fall (stubborn and not so bright at times) being put in an ambulance going from one hospital to a different one with a better trauma unit, and saying goodbye to my dad as they began cutting my clothes off.   I was in the ICU for quite a bit and talk about flowers, gifts, and cards.  Everyone came to see me and I vaguely remember their visits but I do remember a ton of balloons and flowers and an outpouring of love and affection.  That lasted about six months, up until I was “fine” and my hair was slowly growing back and I was ready to start going to school again.  The only persons left to see my scars were doctors and hairdressers.  I had no idea then that for the next decade I would pray to get those scars visible again: at times I wished I could fall again just so people could see the blood, cuts, breaks, and bruises.  My scars became invisible and slowly I did as well.

Later in life I broke my ankle twice: flowers, cards, balloons.  I had my tonsils out as an adult: flowers, cards, balloons. I had a DNC: flowers, cards, balloons.  I also had chronic pain throughout these injuries people could see  but  as the title of my blog/book (one day) says: No One Gets Flowers For Chronic Pain.  I think most of us have lost someone we love in our lifetime.  The most important person I lost in my thirty-four years here on Earth was my Grandmother, La La.  A day does not go by that I do not think about her or talk to her.  She was loved by many people especially her immediate family and sisters/brothers.  My Aunt Pat moved from Florida into our home for months to take care of her.  I saw a love I had never truly seen between two people: sister love.  I never really knew the deep, intense love they had for one another and there is no way in hell Kayci will be an only child.  My Aunt taught me a lot about love, family, and support.  I have a point, promise.  After La La passed, the funeral planning took place and everyone was here with tears of sadness and joy at the many amazing memories we all shared with our now angel, La La.  A week or month goes by and life goes on.  It is not that people forget the loss, it is just that the people still in this world must keep going.  The flowers, cards, and words of sympathy stop but the pain the people who loved a person he or she lost does not.  That is how it is with chronic pain.  I know many of you wish so much people could see your pain (physical and/or emotional) as brain surgery, ankle surgery etc were far easier to bear than chronic pain but they cannot and although that sucks at times it is something we must come to peace with.

Not everyone is going to believe you.  I’m sorry but I have to be honest.  However, you will find that the people who do believe you and don’t think: “its all in your head” are the people who will be in your life forever.  Chronic pain is getting noticed and I do believe we are moving in the right direction. Chronic pain was not even a term used when I was searching for a cure to my pain.  I did not have the internet to find support and truly was alone as I knew not one person with an invisible illness until  I went to the Mayo Clinic Pain Rehab Center.

People love you and sometimes it is very hard for your loved ones to give you the support and ‘flowers’ you need because they truly do not understand your pain and how could they?  Focus on yourself and know that you do have support from people with chronic pain.  You are always free to email me, I think the people who have emailed me know I write back within a day and continue to make contact.  I do this because there are some things in life you just have to do and for me that is helping people with chronic pain.  When I write ‘have to’ I mean that in a positive way.  I want to, I believe it is my calling, and writing is my passion.  As Abraham Hicks says: “People will love you, people will hate you.  And none of it will have anything to do with you.”