June, 2016 - RSDSA

RSDSA’s Final Achilles – Our Swan Song

June 29, 2016

By Samantha Barrett, Special Events Coordinator

This past weekend, RSDSA participated in their final Achilles Walk. We have been doing the Achilles Walk as an organization for over a decade. The event has run its course. We have decided we need to move on and change things up a bit for the CRPS/RSD community.

For me personally, this was my third Achilles Walk. I attended my first Achilles when I started interning for RSDSA. That first year was absolutely beautiful. It was my first time staying in New York and seeing Central Park. I met so many people and made so many lifelong friends. It was amazing to me that, after 8 years with CRPS/RSD, I was still learning so much from others with CRPS/RSD. I remember the feeling that surrounded me and everyone else that day- hope. Being around so many people that have an understanding about what you’re going through is life-changing. Prior to this walk, I could count on one hand how many people I knew, personally, with CRPS/RSD. Now, a vast majority of my contacts in my phone and on social media have CRPS/RSD. I still stay in contact with most of the people from that first walk today.

Last year’s walk was a little different. It was cold and damp. It was enough to give you a bone chill (and a terrible cold). We didn’t know how many people would come out in the rain. But, as usual, the CRPS/RSD community showed its strength. People still came out to make the most of a dreary day. There was still so much hope and love. I got to see the people I had met at the previous year’s walk. As I observed, I saw that it was like a reunion. People were hugging (gently), saying hello, chatting. The CRPS/RSD community is like another family. You may not see these people every day, but when you do, it is like nothing has changed. While everyone is living with their own pain, everyone still asks how each other is doing. We all have a special radar that can tell what someone’s response to the question “How are you doing?” really means. If their response is along the lines of “I’m okay,” with a forced smile, you know that they are having a rough day and you watch out for them and make sure that they don’t overdo it. Most of the time, we don’t even realize we are reading each other, we just know what responses mean when we say them. This walk still ended up being a success. We were all freezing by the end, but we had to see each other.

This year, I was nervous leading up to the walk. As many of our participants know, we had some complications along the road to Achilles that we couldn’t anything about. When we decided this would be our last walk, I wanted to make it as fun as possible. We got awards donated to us from Crown Trophy, we had snacks and water, and we encouraged people to come out and be as festive as possible. Our location got moved to a different part of the park and our walk route was changed. I wasn’t sure how many people would show up because of the frustration (and understandably so). But as always, the CRPS/RSD community is stronger than we even realize and can overcome any obstacle. Checking people in that day was wonderful. I was able to put faces with names and able to introduce myself in person instead of through the internet. We had so many people there that I was only able to leave the registration table 2 minutes before the 1.5 mile walkers were about to leave. I had to get a group picture! Sorry to all of the 4 mile walkers that were not in the picture! But there were so many people. And the energy was just as great. People were meeting for the first time, reuniting with others, giving advice to newcomers, and soaking in the day. I was able to get to talk with so many of you and make more lifelong friends. I left last in line for Team RSDSA. We were held in a staging area while we waited for the walk. I made my way to the front of the line so I could get decent pictures and help lead people where they had to go. Let me just say, WOW. There were so many people with us. I only saw RSDSA shirts when I looked behind me. It went back as far as I could see. While we were limited to 150 walkers this year, I think we had the largest team at the walk. It makes me so incredibly proud to be a part of this community, not only as an RSDSA employee, but as a person living with CRPS/RSD.

Towards the end of the day and into the work week, people were realizing that was the last Achilles. It was heartbreaking to hear and read how upset people were. But then it occurred to me that no matter where we go, our community will show up. We are strong and support one another. We will have a walk to take the place of this event, just in a different location. If we just consider whatever event takes its place as the new “go to” event, it will be just as great. No matter where we are in the country, the CRPS/RSD community shows up to support each other. While change is always something that is difficult to adapt to, this change will be great for RSDSA and the community.

To all of the friends I have made over the past 3 Achilles Walks, thank you. Each and every one of you inspire me in a new way, every day. The strength that you all show and the support you all provide is so important to keeping hope going within the community. We are the future, we can make a difference.

We wanted to thank everyone that has participated in this walk with us over the past decade. Your dedication and support has been incredible! We hope you keep all of the connections you have made and stay in touch with them. If you want to attend another walk, please keep checking our RSDSA Events page. We have events coming up in Pennsylvania, Minnesota, Maine, New York, New Jersey, California, and Tennessee. Be on the lookout! We hope to see you all at events in the future.

CRPS Supporters: You and Me Against the World

June 21, 2016

By Shannon for the RSDSA blog.

Sometimes, it just takes one person to make a significant difference in the life of someone with CRPS/RSD. For Shannon, that person is her mother. See how Shannon’s mom has helped her on her CRPS/RSD journey and how music tied them together even more.

I remember growing up and hearing the song “You and Me Against the World” on the radio. At the time, I did not appreciate all that it stood for; however, I do now. This could be yet another theme interwoven in my 26.5-year journey dealing with RSD, as this is how it has been for my mom and me. She has been by my side helping me to fight the battle, yet mom is fighting her own battle: having to watch me fight to get through each and every day. She thinks I do not see the emotions on her face or hear her silent tears; I know and that hurts me too.

I am the youngest of three and the only one my mom did not “push” (as my sisters would call it) to take piano lessons. I was the one who would rather play barbies outside with my friends or read, as I honestly did not want to play the piano. My mom is an amazing pianist. She started taking lessons at a Conservatory, though part of that meant she had to memorize music and take juries which consisted of playing your instrument of choice in front of faculty and getting a grade. That meant mom had to memorize her pieces, which were classical in nature (now I should say her piano instructor was Russian and was very strict). So, who was the one who helped mom? Me. I had played flute so I could help her. I fell in love with the music, passion, and emotion. Mom and I would sit down in the evenings and she would practice, and when she nailed it – GO MOM! Mom would play a variety of pieces from the great composers which inspired me. Finally, at the age of 14, the PIANO BUG bit me. As my sister would say, I took to the piano as a duck to water. I loved the playing the piano as it is such an expressive instrument. I knew my career would be in music.

My senior year of high school I elected to attend the same Conservatory as my mom, majoring in music therapy with a concentration in piano. Guess who was my teacher? Yep, the same as my mother. Freshman year was rough- adjusting to all the newness of being away from home and studying for exams as well as practicing. Not only [did I have to practice] my instrument, but I also had to take keyboard classes as well as guitar for my music therapy courses. My group of friends and I lived in the practice rooms. The conservatory was an hour from home, which was a blessing given the events that were about to occur.

I made it through my first semester and did fairly well – and then came Spring semester. Tuesday, February 13, 1990, literally one week after my 19^th birthday, I knew something was not right with my right hand. It hurt and it looked different. Naturally, I thought I had been practicing too much, since we were expected to be in the practice rooms a minimum of 8 hours a day. I figured I would go to the nurse later that day. Well, it also happened to be the day of my piano lesson and wouldn’t you know it my teacher thought I was faking the pain because I did not want to have my lesson (I was playing Mozart and loved the piece). I literally wanted to say to her: “Can’t you see my hand is swollen and hurts?” I went to the nurse and talked to her and she said it was probably carpal tunnel, but if [it did] not better let her know and we would see about going to the doctor. I called my parents and told them. I was crying; this pain was not the norm.

By the end of the week, my hand was just a part of me. I could not use it and it was so swollen and even a breeze hurt it, which I thought was odd. I saw an ortho [orthopedic] who was wonderful- very kind and caring. Her diagnosis was CTS and she put me in a splint. If [the wrist did not get] better, we could do a cortisone injection and possible surgery. Mom came to school that afternoon and picked me up so I could go home. The pain became more intense over the weekend and we called the nurse to tell her that something was going on. So, Monday I went back to the doctor and I had the cortisone injection – UGH! Did that sucker ever hurt! I also went for an EMG and was to return the next morning to see my doctor for the results. All of the medical personnel I met were shocked at how quickly this happened. My parents were like: “What the heck?!” I had no idea what was going on. All I knew was I was in severe pain and had no use of my right hand. I ended up having surgery on Thursday, February 22. The doctor told us it would be a fairly short and easy surgery. NOPE – not the case with me. There were things that just did not look right and the doctor was concerned. My parents took me home and I slept in their bed that night. Mom was my “nurse” and honestly I was so tanked on medication, I thought mom was an alien. She literally looked like a bug with eyes bulging out of her head.

Things progressed fairly quickly, as I had to have my other hand operated on too for carpal tunnel. Mom was the one to take me back and forth to the doctor. We would talk and laugh figured we had to do something to make this thing “fun.” One day, we were at the drive-thru at Wendy’s and mom was ordering taco salads, and for some reason she put the bag in the back seat. When it was time to eat mom said: “Shannon would you please hand me the bag?” I just started laughing, as here I was, both hands bandaged and I could not use them and she is asking me to hand her things. Well, in April of 1990, I was diagnosed with RSD. At that time, treatment was inpatient stay and [included] massive courses of steroids as well as antidepressants. You might as well have called me the “Witch from the Bad Place.” I was evil and nasty and said things that would never come out of my mouth! And I was angry?! My emotions were all over the place. I tried to go back and finish my semester with the help of my friends to catch me up. They also would be scribes for me, as I still could not write due to the pain. One night, I remember talking to mom, and I was so angry at her that I cursed her out told her I hated her and then I said: “I wish YOU had this and NOT ME!” I slammed the phone down and almost ripped it out of the wall. My roomie looked at me as though she had no idea who this person was, and honestly I did not either. Something was so wrong with me. I was in so much pain and could not think straight due to all the medication. What did I do, but scream at my mom? Honestly I regret that comment to this day.

Fast forward though through the journey as it is hard to write it all out, but I can say the one constant [person] who has been by my side is my mom. She has fought for me when others would turn the backs on me, she would encourage me when I was at the bottom of the barrel, she would stay up late at night when I could not sleep. We would watch old episodes of “I Love Lucy” and laugh. Our favorite episode is the Vitavitavegamin episode. Mom would spend the night at the hospital when I had surgery and was so scared. Mom also struggled silently, as she had no idea what was going on. She spent many nights crying herself to sleep.

Mom was the one who knew that to get back on normal ground, I had to find a way to use my music. She was an organist at the church and they were looking for a choir director. She volunteered me to help out, which I did and that led to me being their choir director for many years. I also became the choir director at my home church, which was cool as my father was the minister. It was neat, as here we are as family, but in the church we were seen as minister, choir director, and pianist! I pushed mom hard, as I expected a lot from her as well as from my choirs. But with mom, I did not have to tell her how I wanted this part of the anthem played or to speed up/slow down; mom knew. People would say to us: “You inhale and your mom exhales,” which is so true! Music was my source and strength.

My parents also encouraged me to return to college. I am so glad I did. I initially started out as a music education major, but switched to majoring in psychology with minors in music and education. Mom was the one who encouraged me to keep on fighting; she would stay up late again helping me study for exams. We would spend many doctor appointments studying for exams, as one of my professors would give the class the test though we had to dig thru the books to find the answers, but I did. We would study to and fro and while we were at the appointment. I remember one of my classes we had to analyze all of the third movements to Beethoven’s nine symphonies. This happened during one of my really bad times. Who was my cheerleader? Mom! She was telling me I could do it and I did, but oh the pain of that.

It has been a roller coaster of 26 years in dealing with this beast. So many emotions, but I have had the unconditional love and understanding of amazing and loving parents. They have both battled so many emotions and, honestly, it hurts me so much to see them go through their own hurt and pain. It is so true that this beast impacts all of those around you in your life. My parents have given time and time again, no questions asked. Their support, their love, and their caring just amazes me each and every day.

As I reflect on this journey, I recall the words an amazing woman (my mother who is my best friend) said early on in this journey. It has been “You and Me Against the world.” We have laughed, cried, screamed, and still talk about that horrific comment that I made to her many years ago. It makes me cringe to this day. My mom has been my rock, my source of strength, and I am truly blessed to know that on this journey it has been:

“You and me against the world,

Sometimes it feels like you and me against the world,

When all the others turn their backs and walk away

You can count on me to stay

You and me against the world,

Sometimes it feels like you and me against the world

And for all the times we’ve cried I always felt that

God was on our side”

Lyrics by Helen Reddy

Team Caroline: A CRPS Story of Hope & Of Giving Back

June 14, 2016

Written by Caroline Bert for the RSDSA blog.

Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS “limits” and to make a difference in the CRPS/RSD community through fundraisers.

My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went into a 3-year remission until 2011 when I re-injured my left wrist working as a hostess at a restaurant. We tried the nerve blocks, but because my nerves were already scrambled from the previous blocks it had an opposite effect, causing a flare up during the procedure.

It was time to explore other options. Calmare treatment was unbearable, acupuncture was as well, and physical therapy was torture. With high hopes I stepped into Dr. Brian Durkin’s office, I put all of my trust into him and it was the smartest thing I have ever done. Dr. Durkin is the best doctor on the planet. He has made it possible for me to accomplish more than I could’ve dreamed. In 2012 I had my first ketamine-lidocaine infusion at Stony Brook Medical Center. After waking up from the infusion my pain level went from a 9/10-2/10. I was able to take the brace off of my arm and I could even touch it. This is something that I had not felt in a long time, and it was relief.

What I liked most about Dr.Durkin was that he encouraged me to live how I wanted to, and gave me the all the help I needed to do that. Many doctors would say that being a dancer with RSD is very dangerous. I was told to stop dancing and one doctor even told my mom that “saying your child with RSD wants to be a dancer is like saying that your child the hemophiliac wants to work at a glass factory.” But Dr.Durkin said that dance was a form of physical therapy for me. And that as long as I knew my limits and listened to my body, I could be a dancer even with RSD. He told me that most people who have had RSD will have it spread to other parts of their body, but me being active was preventing that. He never told me to quit doing what I love.

In 2012 I went away to SUNY Potsdam as a double major dance and photography, however due to the cold weather and a fall on the ice I developed RSD in my right wrist that winter. I came home and then went back to Potsdam. I loved Potsdam but it was not a good place to be with RSD. The doctors were unfamiliar with it, a trip home takes all day, and the cold weather makes it worse. In 2014 I came home for good. The RSD in both wrists was at the worst it has ever been and every time I came home I had to miss more school, it was not worth it. After coming home, I was able to see my doctors regularly, I was always able to get my prescriptions refilled on time, and I had my family around to make sure I was okay. I took classes at Nassau Community college while figuring things out. coming home was hard but it was what I needed. I got 4.0 in every class, and started working for the New York Yankees as a fan photographer. I get infusions every 6 weeks and I am able to do everything I love to do, to live a somewhat normal life under these rare but difficult conditions.

My first Achilles walk was in 2012 (The year I graduated High School) and my shirt read: “RSD won’t stop be from being a dancer, a photographer, or graduating” It was amazing to meet so many others that could understand what I am going through.

This year my mom and my friend Annette wanted to raise more money for the walk than we ever had in years past. They took on the task of planning my fundraiser, because they love and support me so much. We held the RSD/CRPS Fundraiser on June 3rd from 8-11 at a local bar called “J.Pauls Terrace Cafe”. My dad Glenn Bert and friend Annette Quinn were guest bartenders and 20% of what was made at the bar during the fundraiser was donated to the walk. We also sold raffle baskets and 50/50. We had an outstanding turnout and live music by my cousin Jake Incao. It was an amazing night and I could not help but feel blessed because as I looked around at the crowd in the bar that night I was reminded what an incredible support system I have. We raised over $2,500 that night, and the donations keep coming from some friends that were not able to make it. I would say that the fundraiser was very successful because although it is great that we raised so much money, I think it is even better that we raised the awareness in my community. During the fundraiser so many people asked me questions about what RSD is and I was so happy to educate them because next time they meet someone with RSD they won’t have to ask “what’s that?”

So, while we made a lot of money we ultimately achieved our goal of raising awareness in the process. My support system took on this entire project of creating a fundraiser on their own. It was put together by the people who have seen me at my worst and still love me. They organized raffles, donated their time and services, and advertised the event as much as possible. If people would like to donate to Team Caroline, please click this link.

A Journey with CRPS/RSD Through the Gift of Music

June 7, 2016

By Shannon L. for the RSDSA blog.

Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below.

“WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD). In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain.

I have been wondering how to even start this blog, as so much has happened over 26.5 years – all the doctor appointments, surgeries, blocks, changes in relationships (with both family and friends), career. As I was sitting at the doctor’s office one Friday, getting yet another treatment for RSD (the bazillionth one or so it seemed) my nurses were talking to me about how RSD became a part of my life. I began telling the story and one thing was a common and constant factor: MUSIC. You see, even from the very beginning, in the times of the clunky Walkman’s to portable CD players to iPods and now smart phones, my music went everywhere with me. My doctors knew from the get go that, no matter what, I was going to listen to music (even in the Operating Room).

I was a music therapy major in college, with my goal being to work with autistic children and help them with music. My second semester started and all seemed to be going well until February 13, 1990, one week to the day after my 19^th birthday. As I was getting ready for my weekly piano lesson, I noticed my hand was not right – there was so much pain and I could not use it. I was thinking about how in the world I was going to get through my lesson, as well as the rest of my classes which consisted of keyboard, harmony, and guitar. Well, needless to say my instructors were at a total loss and the journey of endless trips to doctors began, as well as taking my music with me. I would listen to classical music with my favorite piece being Bach’s Toccata and Fugue in D Minor and Beethoven, who endured much hardship in his life and yet wrote beautiful music that can hit every emotion one can imagine.

I ended up having surgery for what was thought to be carpal tunnel on both hands. In April 1990, I was diagnosed with RSD. I am sitting there thinking what the heck is this? At that time, doctors did not know too much about this beast. All I was told was I would not finish college, nor would I be able to work. How can a doctor tell a 19-year-old kid this? I had plans! I wanted to play the piano and use my music to help others. What was I to do? I went through every stage of emotion you could imagine and I turned to music to help me cope. Another song that kept repeating on the radio was You and Me Against the World, and that is what my mom told me. She would stand by me and help me fight this. Yet, all I could think of is my life in music is over.

So I thought. My father is a minister and my mother was an organist. The church happened to be looking for a choir director and mom thought what better way to get me to use my music [background] than to direct. I started helping the choir and found directing to be so therapeutic and yet another way for me to escape the pain. There was one particular choral composer whose music helped me and seemed to reach the very depth of my soul. When I was at my lowest, I would listen to recordings of his anthems over and over again and pray for the strength to get through this. I could throw myself into music, planning anthems and rehearsals. I would forget how much pain I was and the severity of it. Many people seemed to question whether I was in pain because “I looked so good.” My point then was I am Shannon who happens to have RSD – not oh by the way I have RSD and my name is Shannon. I fought so hard to be known as me and not the pain, even though it was hard. I also directed the adult choir at my father’s church as well as a men’s chorus, which was wonderful. Yet again, I could escape for a little while and focus on their singing and teaching them just how I wanted the anthems to be sung as they were painting a picture with the words of the anthems. Once again, the music of this one composer helped me. My hope was to one day work with him in having a concert with my combined choirs. In November 2000, we did just that! He traveled from Ohio and rehearsed with my choirs on a Wednesday night and then we had a concert the following night. Talk about AWESOME! The choirs would do cantatas at Christmas time and one particular was called The Journey of Hope. We did this two different times and after the second time I just sobbed and cried, as no matter what, on this journey, we have to have HOPE!

Every surgery I went through, I had music with me and the doctors would be cracking up as I would be laying on the OR table singing in my own little world. I would ask the doctors how long surgery would be and plan my tunes accordingly so that I would end with There’s a Light at the End of the Tunnel from Starlight Express. I have always felt that there is a light at the end of the tunnel. For me, that light is knowing I have accomplished something during the day, no matter how large or how small.

I am also a huge fan of Broadway shows and am so fortunate to live close to the Baltimore and Washington area, which is rich in theatre. One particular show I saw, which I remember sitting there crying through, was “The Secret Garden.” The song Hold On got me through some very difficult times as it says: “It’s the storm, not you, that’s bound to blow away.” That is so true. The pain can be raging, but that does not define who I am; it is not going to defeat me. I have often said that my legs would cooperate long enough for me to get through my day at work then act up when I am home. I am bound and determined to have as normal of a life as possible.

I also saw the show “Kinky Boots” and I absolutely loved it. This show has such a tremendous message- do not judge a book by its cover. Much too often I hear: “How can you be in pain? You look so good,” or “You cannot hurt that badly, you are working,” as well as “Don’t I see you walk every day?” What people do not see is the struggle that happens behind the scenes – how difficult it is to get through the day, to try and live a normal life, though I honestly do not know what normal is any longer. My life has been on a huge roller coaster since 1990.

This journey has taught me so many things, some good and yet some not so good. Through it all it has been my parents and myself against the world, fighting tooth and nail, each and every step of the way. I have learned the hard way who my true friends are, as this is not easy for anyone, even our doctors. I am truly blessed and thankful to have the doctors I have now. They treat me as a person and know I want to continue to work and have a life. I am determined to just be who I want to be- a fighter determined to get through this.

One thing that helped me was accepting this as I learned it is not ME – it is a part of me, but RSD does not define me. I am Shannon who has RSD in both legs BUT I am determined to work and have a life. It may not be what I thought it would be 19 years ago, but that is okay. Another song that has helped me is the song “Grateful” by Rita Ora:

“I’m grateful for the storm ~ Made me appreciate the sun
I’m grateful for the wrong ones ~ Made me appreciate the right ones
I’m grateful for the pain ~ For everything that made me break
I’m thankful for all my scars ~ ‘Cause they only make my heart
Grateful”

You see, what my music has helped me see is that if we hold on long enough, and hold on tightly, there is a light at the end of the tunnel. We have to rise up and fight and be who we are, let others see that NO matter what, we are people first and not our RSD. In the end, I can say that I am grateful for the pain. Do I like it, NO, but it has taught me so many things and helped to shape me into the person I am today. Through this journey I have met some amazing people, many of whom inspire me each and every day. I have the most amazing parents and so blessed to have friends who understand and care as well as to have doctors who get it and an employer who understands. I’m grateful for the pain and everything that made me brave, I’m thankful for the storm… I’m grateful.

The Friend Who Didn’t Tell Me About Their Chronic Illness

June 1, 2016

By Melissa Lovitz for the RSDSA blog.

Dear Friend,

I think you didn’t tell me about your chronic illness because I didn’t create a space for you to share with me more about your whole self. I wasn’t fully open and honest with you either – I’m sorry. Living with an invisible illness isn’t easy, and sometimes the shame and stigma that is associated with our conditions hinders our ability to be forthcoming about this important aspect of our lives. But, our silence perpetuates the invisibility of our illnesses – just saying.

I think you didn’t tell me because you’re so used to, and good at, managing your condition on your own. I am too! I wonder if you thought I’d judge you. I wonder if you thought I wouldn’t believe you. I wonder if you thought I’d be scared.

The truth is, I was more scared when I didn’t know how to take care of you that one night after we got home from our adventures downtown. When you stopped responding to me, I wasn’t sure if I should give you juice, call 911, get your test strips, or just wait for you to feel well enough to tell me how I could best help you feel the ground beneath your feet again.

When you live with a chronic, yet invisible illness, you become accustomed to putting up a front. With me though, you don’t have to worry about that. Instead, talk to me! Please. Tell me the signs and symptoms that I should be look for. I need to know what I should be aware of in case there is an emergency when I’m with you! In return, I’ll pledge my friendship, unwavering support, and reciprocity.

When you share your experience with me, you can expect some comical commiserating, and a whole lot of empathy. You can expect me to ask you some follow up questions so I better understand your lived experience. You can anticipate that I will say “I can relate,” and share my own experiences too so you don’t feel too overly exposed or alone.

Here are some things I might share:

I’ll share that sometimes my pain is so distracting I notice everything! For example, when my pain keeps me up at night, I often debate which is the lesser of the many evils, the constant blowing from ceiling fan in my room or the discomfort from my value brand sheets.

I’ll surprise you by telling you about my “sixth sense” – the ability to sense vibrations. Then for fun, I’ll shock you by telling you that you have a text message when your phone is across the room. To be honest, vibrations really hurt me. So, after that I might ask you to please keep your phone on silent when we’re together.

I’ll explain that sometimes my pain is so sudden and severe that I retreat quickly – even from those who are closest to me. I’ll be physically present, yet mentally I’ll be somewhere far, far away. I’ll explain that without some sense of relief I may not even be able to articulate what I’m experiencing or how others can help me. And then while I’m feeling good, I’ll share some tips and tricks for how I’d like you to be my friend in those excruciating moments. Pro tip: try to distract me!

I’ll also share that when the pain subsides, momentarily, I have a really difficult time imagining it actually hurt that bad in the first place. I probably won’t want to talk about it.

You’ll also need to know that I’m a really planful person, but sometimes the plans will change because there are times when chronic pain wins – it’s just my reality. Therefore, I’ll ask for your patience and understanding, and offer this cliché remark – “it’s not you, it’s me.”

Finally, I’ll ask for you to please believe me and respect me. I’ll remind you that I’ll always extend to you the same respect and acknowledgement.

Revealing this aspect of my life early and often isn’t a call for attention or praise. And, if you share your history of chronic illness with me, I won’t think you’re looking for attention either. The fact is, if you’re going to invest in being a part of my life, and vice versa, you need to know when to worry and when to let me figure it out.

I hope in the future you’ll feel comfortable sharing with me more about yourself. If you tell me more about your chronic illness, it will help me continue to learn how to be your friend, support you, and grow our relationship.

I realize that vulnerability is hard work, and sharing a part of your story requires bravery and courage. I also know you’re incredibly strong. I’m here to listen whenever you’re ready.

Sincerely,

Your “Spoonie” Friend