I am The Voice of Chronic Pain - Part Two: Friendspectations

In my last blog, I explained that: What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. This plays true for close friends and well-known people in your community, too.

I have been very blessed with having a plethora of family members and friends encourage me all along my journey. However, this particular blog is difficult for me to write…

One of my closest friends once said to me, “...humans have a tendency to measure people up to their own standards OF THEMSELVES. And if that person ‘fails,’ we feel slighted in some way - that they didn't meet our expectations.” I am the first to admit that I have admittedly unrealistic high expectations for myself. That being said, I also have impractical and idealistic expectations for those around me, too. This has undoubtedly caused me to feel insult throughout many stages of my disability – these expectations that I place on those around me have ultimately caused me to hurt myself…

My wise friend continued, “It's not someone else’s job to meet my expectations of myself. It's my job to learn each as a person and appreciate the goodness in each of them. So even though you feel that someone is not as good of a friend to you as you are to them - you can't hold that against them. That is not the standard they hold themselves to (obliviously). You can show them how to be a good friend by example... but [if] every time they disappoint you, you hold that against them, THAT IS YOU not being a good friend to them.”

Hmmm….

I had to learn a lot about myself the hard way throughout my disability. When I first had surgery, I literally expected the world to stop; I assumed that because I was undergoing The Knife, every single family member and friend in my life would stop their lives to help me (and Gage) with our new challenges. I NOW understand that those expectations were completely naïve; however, that was my truth. That also led to many of my heartbreaks over the past few years.

I will write about how family and friends can better support, help and encourage their loved one who is in chronic pain, but this blog is specific towards expectations, or Friendspectations. Life would be wonderful if every family member and friend loved us the way that we wanted to be loved. But, that does not always happen. Conversely, it is important that we ask ourselves: How often do we actually meet the expectations of our loved ones?

When I first threw out my back, I expected my loved ones to be considerate, sympathetic and patient with me. I do not think that these are unrealistic expectations. However, as my condition worsened, my expectations for those around me amplified. I definitely created a hierarchy in my mind regarding who would help Gage and I and how. I realized that I divided those close to me into Tiers – and each Tier had a particular level of expectancy.

Family Members were on the Top Tier. I literally expected them to STOP EVERYTHING to care for me AND Gage. I believed that my parents and sister should call me daily as well as for Gage’s family to do the same (to support him and to see how I was recovering). I expected intense levels of help from all family members. I expected their world to reflect my disability. I expected generous amounts of care, sacrifice and assistance. I expected Gage and I to be the center of their universe.

Close Friends were the Middle Tier. These people in my life were given many of the same duties as Tier One; however, I relinquished them of daily support. I anticipated phone calls, cards, food and concessions – our social life ultimately revolved around my disability.

Other Friends, Close Co-Workers, Neighbors, Church-Friends, etc. were the Last Tier. I counted on these people for support in the environments where I saw them most – work, church and my community. They were supposed to take care of me when I was not at home and when Gage was away.

In a perfect world, ALL of those who love me would do everything that they could to care for not just me, but Gage, too. And, most everyone DID! But, my expectations were inappropriate and I realize that now. However, they stuck with me through the first several months of my surgical recovery and every time a family member forgot to call me or Gage, I cried. Every time someone offered to stop by the house and cancelled, I was devastated. Every time a social event could not accommodate my physical needs, I was offended. Every time the phone did not ring when Gage or I needed comfort or encouragement, I felt insulted. Here we were, a newly-married couple living the life that most people who have been married fifty years do not have to endure, and I expected everyone in our life to stop and help us.

I can only assume that while I was offended, my extreme expectations offended others, too. For that, I am whole-heartedly sorry. I should have been grateful for every single kind word or gesture Gage or I received. I should have been surprised and appreciative for ANY good deed aimed at me and my husband. Please do not misunderstand, I did appreciate EVERY act of kindness we received; where I faulted was that I expected them all…

Unlike what was promised to me, I did not recover after eight weeks. As you know, I was part of the 5% of patients where my spinal fusion surgery made my condition worse. Every day beyond the two months, I was angry. I demanded the recovery that was sworn to me. And, I believe that I often took out my anger and pain on those closest to me…

What I learned months later, and continue to learn every day of my disability, is that any act of compassion is a gift. It is not my family’s or friend’s fault that I am disabled or in chronic pain. It is also not their “job” to care for me and make my life better. When they bring me food, I am grateful. When my cousin gives up his seat so I can sit down, I am honored. When my parents schedule a holiday around my pain-restrictions, I am humbled. When my friend makes a 45 minute drive to my house so that I do not have to sit in a car for an amount of time that could trigger pain, I am thankful.

Yes, there are MANY things that family members and friends of a chronic pain or disabled person would appreciate. I will get to those in my next blog. Today, I wanted to remind myself, and anyone else living with chronic pain, that expectations can hurt just as much as a failed surgery.

Stepping back, I can see that my support system was amazing those first days and weeks post-surgery. I wish I could actually remember more of it. I was taking so much medication, many of the memories I have from those days were given to me from my husband. I have vases to prove I got flowers. I saved all of the cards that I have received for those days when I find myself still feeling alone; those cards remind me that I have many people who are praying for me. I have Tupperware toppling out of my cabinets from all of the food brought to us. But, I asked Gage not to take any pictures. Why would I want evidence of one of the worst experiences of my life? Why would I want visuals of the most painful event in my life? When I do have a flashback, I try to calm myself with the good and wonderful things that my family and friends did to help Gage and I through those dreadful days.

The greatest things that I recall my Support Network doing immediately after surgery were:

- Food and Flowers: Immediately after I had surgery, Gage wore his Nurse Hat more than any other. He did not have time to cook me a meal, let alone himself. My parents and Gage’s parents brought us food more times than I could count! And, my family and friends filled my hospital room with flowers – my favorite Cheer-Me-Up gift!

- Pillow Talk: I still cannot get enough pillows! Immediately post-surgery and now – COMFORT IS KEY! I had people help me get comfortable around the clock. I even had a cousin make me a special pillow cover which I still use regularly to this day! And, my loved ones understood that when the pain was SO unbearable, I needed alone-time. If you have never had major surgery before, it is not only painful, but it is EXHAUSTING! One minute, I was up and chatting with a room full of amazing visitors, the next, I was screaming and begging for the room to empty so I could die to my pain by myself.

- My mother-in-law brought me pajamas to the hospital. That was one of my favorite gestures. It was practical. It was sweet. It was soft. It was the perfect gift for the moment!

- Also, my mom and dad took care of my dog so that Gage could stay with me at the hospital around the clock. I know that to those of you who are not dog-lovers, this may not mean anything to you, but our dog is our baby. Taking that burden off of Gage’s plate – on top of him taking care of me – was a wonderful gift!

- I was in the hospital for about 6 days. I needed medical care. Gage needed physical and emotional support while he supported me at the same time. My parents and sister were with us around the clock and other family members and friends rotated in and out of the hospital door more than I could count. Those were an excruciating six days and I will never forget the importance that our support system played during those days.

Prior to writing this blog, I admitted to my friend, Steven, who asked HOW our friends can help me (and Gage) that this particular blog would be difficult for me to write. I am ashamed at my selfishness. I am also saddened by the memories of the struggles that Gage and I endured that first year post-surgery. However, I pray that this blog serves its cleansing purpose. Yes, Gage and I are still in need of support. Yes, I am still in constant pain and I can offer many suggestions to friends and family members who WANT to support their loved one in chronic pain. Today, though, I thought it important to remind myself – and anyone who wants to reflect on their own journey in life – that expectations can either shape or break a relationship. I am thankful that my eyes were finally opened to the fact that I AM GRATEFUL for any love and kindness bestowed upon myself and my husband.

Stay tuned to learn HOW Friends and Family can help a loved one who is in chronic pain in Part Three of this multi-part series!