I’m a Young Male Adult and Although Disabled, I Don’t Look It

Written by a 2023 Young Adult Weekend Retreat attendee for the RSDSA blog.

Complex Regional Pain Syndrome affects every part of one’s life. The constant pain you are in restricts you from enjoying life. Aside from the pain you are in, your social life will ultimately be affected. I recently learned that CRPS is generally found in women. 85 percent of cases to be exact. I fall in the less prevalent 15 percent category of men with CRPS.

Men and women can both have CRPS, but our experiences with this condition are not entirely the same. Men are taught from a young age to be the “tough” guy. We are told to be the “man” of the house. Whenever I am on an airplane, I am usually asked if I can lift someone’s luggage into the overhead bin. It is usually a woman that asks me to help them out with their heavy suitcase. In these cases I feel somewhat defeated. Can I lift the bag for them? Sure, I am physically able, but it will definitely hurt. I feel uncomfortable in these situations as I do not feel like explaining myself to a total stranger.

I recently attended RSDSA’s Young Adult Weekend Retreat in Philadelphia. I had a great time, but I was the only male in attendance. I know that men are the minority when it comes to this diagnosis but I do wonder if men do not show up because they may not want to be vulnerable. Men do not always enjoy talking about their feelings and what is going on in their life. We try to be quiet and just attempt to get through it. This is definitely not a healthy practice as we all need to vent and meeting others who suffer just like you do can be beneficial.

As much as I would like to have someone in my life, it is often difficult to put yourself out there in todays dating world. This condition is scary. Any Google Search will show you that CRPS is nicknamed “the suicide disease.” You want people to understand, however, you don’t necessarily want to tell someone you just met about a condition like this one. But at the same time, you want to be able to talk about it. It is also hard to market yourself when you have not been able to hold a job for the past ten years.

In addition, just hanging out with a woman can be difficult. I live right outside NYC. Usually the women I speak to via dating apps such as Hinge, live in NYC so naturally that is where the dates are. Going to the city and exploring requires so much energy, the thought of it gives me anxiety. But I believe chivalry isn’t dead and a woman should be treated properly. I like opening doors, walking women home, and paying for both of us when we spend time together. Since I am disabled, I live on a fixed income and may not always be able to afford to do all the things I would like to do for someone. It often becomes very easy to feel defeated.

One of the positive outcomes of having a diagnosis of CRPS is that you really learn who your true friends are. I am lucky to have a group of friends who have been there for me through it all. However, I have lost some along the way. In addition, it becomes difficult to make new friends at my age especially in my case. I do not have the energy to form new friendships and being disabled doesn’t exactly allow for me to be out and about so often. I would much rather be home watching television in most scenarios. When I do meet someone, they always ask the question, “So what do you do?” I’m a young male adult and although disabled, I don’t look it. Besides some scars from past surgeries, I look completely healthy. Most men my age are in their prime building their resumes and taking care of their family. This is not the case for me.

The minister at my local religious institution came up to me at the last holiday. He wanted to know if I would be interested in attending his “whisky and wisdom” events catered to young male professionals. I have attended a few and I am always very uncomfortable. I am on a great deal of medications and definitely cannot drink whisky. I also do not have so much in common with these young male adults. I have tried to explain my condition but anyone reading this knows how that goes. I have family members who have asked me if my condition could be psychological, let alone strangers who are meeting me for the first time.

There are times where a wheelchair might be needed in social settings. I attended a concert with what I thought was a close friend. I told him about my need for a mobility device. He was apprehensive to the idea and ultimately did not help me out. I was just left to walk with the chair and just sit in random spots when I got tired. I have not spoken to this “close friend” since that night. Obviously this did not make me feel great, but I did learn a lesson. Keep your circle small, but have a few great friends.

Without the ability to work or get out and about, loneliness sets in. Although I do have family and friends to speak to, it’s not the same as having a significant other. I promised myself that I would try to explore the dating scene once again.

I will continue to fight this condition and do my best to raise awareness. I hope that I can one day meet more young male adults. I am forever grateful to the RSDSA for providing resources and hosting their Young Adult Weekend Retreats.

The Young Chronicle: Ophelia

The Young Chronicle features Ophelia, who discusses ableism, assistive devices, and being young with CRPS / RSDWritten by Ashley Epping for the RSDSA blog.

Ophelia is a 19-year-old who developed Complex Regional Pain Syndrome at only nine years old, is from Ontario Canada and uses the pronouns they/them/their. They were originally told by a doctor that they were only experiencing growing pains. They reflected on the experience saying “I always knew it was not growing pains because growing pains do not put you in a wheelchair”. Ophelia’s pain started in both knees and has now spread to their entire body. In 2013 they went into remission after a stay at the Children’s Hospital of Philadelphia in their chronic pain program; but the pain returned a year later and it came back full force.

Currently Ophelia spends a lot of time conserving their energy at home, but they are able to become more mobile with their wheelchair, without which they would be stuck in bed. We openly spoke about what life is like with CRPS when you are not able to fully function, when you need assistive devices and when the pain becomes incredibly discouraging.

How was the transition to using a wheelchair?

“Losing my mobility to a wheelchair was hard, but at the same time it was freeing. Assistive devices are so stigmatized, and it is hard becoming okay that you need a wheelchair but once you do, you are so free.”

Q. Have you found support through online CRPS groups?

“Yes, I have found people of all backgrounds, going through all different kinds of therapies or no therapy at all and everyone is living with it, which is amazing.”

 What was your experience at the Children’s Hospital of Philadelphia?

“It was very difficult because we were put through a lot of physical pain and emotional stress, but most of the friends I made in the program are currently doing well.”

 What are your tips and tricks to getting through a bad pain day?

“I watch a movie or videos online to distract myself, I always listen to music at night to fall asleep, and my therapist is a go-to.”

“It is hard becoming okay that you need a wheelchair but once you do, you are so free.”

We further discussed what it is like as someone with low mobility to read and see others with CRPS doing fully functioning activities. Through our discussion we came to the conclusion that it is a difficult topic because we all fluctuate within our own ableism. Sometimes jealousy can sneak into play because everyone wants to be able to do as much as possible. For a long time, Ophelia only needed to use a cane to be mobile, as they said: “I have been in other people’s shoes before but have become worse to where a cane is no longer an option”. There is no pain exactly alike, but we are stronger when we support each other because there will always someone who understands what is happening.

With online media making it possible to participate in any fashion, Ophelia has gained a significant following on their Instagram and specifically Twitter account. I did ask which platform they most prefer and they laughed and said “I use Twitter the most because when you are stuck in bed you don’t have that many photos; there’s only so many photos of my wall that I can post”. Ophelia’s motive towards social media is about educating people on CRPS. They know that this is not something you learn about in school or from your parents and therefore people like them are a great source to learn about these topics. It is a place of community, “I have friends and followers who are also disabled, have CRPS and/or chronic pain and we can all just feel it together”.

“I have friends and followers who are also disabled, have CRPS and/or chronic pain and we can all just feel it together”.

Through dealing with CRPS, Ophelia has become an activist and advocate. They have shared with me that always having something to look forward to is important. They are currently looking forward to a trip to Disney World, but small things like ice cream or a movie night work perfectly. I am sure that Ophelia will continue to educate and connect with other warriors like them.

CRPS Awareness Day 15: Young Chronicle Featuring Courtney

Courtney lives with CRPS but is going to medical school to become a doctor. See what she says in the young chronicleWritten by Ashley Epping

Courtney developed CRPS when she was 14 years old in her right foot; seven years later at age 21, she is now a pre-med student at Gordon College studying biology. Unusual circumstances happened between Courtney’s story and my own.

Courtney and I went to elementary school together in 2006; I then changed school districts as we moved into middle school. Three years later, Courtney was diagnosed and informed that there was another young girl with CRPS in our city. Courtney and I were then reunited by CRPS and went on to connect our families, treatments and therapists. She was the first to enter the Chronic Pain Rehabilitation Program at Cleveland Clinic. My family and I traveled to visit the clinic where Courtney gave me tips and advice for a few weeks later when I would enter the same program. When starting this blog series on young adults, I was incredibly excited to interview Courtney and learn about her current life at college with CRPS.

When you were applying to college, did you have hesitancies because of your pain?

“Not really because since I was little I knew I wanted to go into medicine. Once I was diagnosed, I always said that I will still be a doctor, and this is not going to stop me.”

Has having CRPS influenced your medical career path?

“I knew that somehow my perspective from what I have gone through with all of this, would help me in whatever field I go into. It helps me relate to people better as I work in hospitals.”

Do you have a disabilities plan in college?

“No, my school does not know that I have CRPS but a few of my professors do. I have always had the mindset that I don’t want to be treated differently.”

In your four years at college, have you had any new pain struggles?

 “The first year was hard because my mom wasn’t there if anything happened. The main struggle was this past year when my migraines became really bad. Last spring when the migraines became debilitating, it became hard because I started to question if I was way in over my head.”

“I always said that I will still be a doctor, and this is not going to stop me.”

Currently, Courtney is interning at Harvard’s teaching hospital within allergy and inflammation research. She wants to go on to a type of pediatric specialty after graduating with her bachelor’s degree. Courtney’s pain is still prevalent and a daily struggle, but she is able to function just like anyone else. She discussed with me that, “You become accustomed to whatever you’re dealing with. When you have this pain for a long amount of time, yes it still hurts, but it would be kind of weird if it didn’t hurt. You have to become used to it.” This is almost an anthem for young adults with chronic pain because we have so much life to live and many paths to discover. We can accomplish anything we set our minds to, it just may get done a little differently.

“I recognize it may be harder with CRPS, but I am still going to do it.”

Courtney gives the advice that you have to find what motivates you to get up everyday and do it. She says, “It is why I went to college for pre-med, and why I am going go to the medical program I wanted to. I recognize it may be harder with CRPS, but I am still going to do it.” Courtney and I have stayed close friends, and we continue to support each other in our ongoing adventures.

CRPS Awareness Day 8: The Young Chronicle with Vicky

Ashley Epping starts The Young Chronicle for young adults affected by the pain of CRPS RSDWritten by Ashley Epping

The Young Chronicle is a new blog series started by Ashley to get insight on CRPS/RSD from young adults. Each blog will offer insight to the unique challenges that young adults with chronic pain face and their ways of coping, healing, and continuing on.

Vicky is a 25 year-old from Illinois who was diagnosed with CRPS nine months ago. Her original injury was a trauma to her foot while playing soccer. As she started seeing doctors and making trips to the emergency room, her pain was dismissed as a bruised bone. Once she was accurately diagnosed with CRPS, the doctor said to her “If you don’t act on this fast, you will be disabled for the rest of your life and will never be able to walk again.”


Vicky and I sat down and discussed her journey from medical worries to her photography business.

Have you noticed a change of opinion about CRPS in the past few months?

Completely, seeing results and doing my research gave me hope. I have been buying book after book and keeping my own journal on what I did in physical therapy and how I am feeling.”

Has anything surprised about CRPS you since you have been diagnosed?

“The way CRPS spreads. I never know if my arm hurts because I knocked it on something or if it is CRPS. It is very scary.”

Have you been able to keep working with your photography business?

“I just shot my first wedding since being diagnosed; it was like coming out of retirement. After not being able to walk, to then learning how to walk again, I knew I had to do this because it is my passion. I couldn’t be scared anymore.”

 Have you ever taken medication for the pain?

“Not prescription, I wanted to feel the pain so I knew how to get rid of it.

“I wanted to feel the pain so I knew how to get rid of it.”

Vicky needed a direction to turn to after not being able to walk or put pressure on her foot; she was advised to attend physical therapy. At first she was incredibly hesitant, but her mother pushed her to schedule the first appointment. Six sessions later, Vicky was walking again. Vicky says “To this day I am so grateful for my physical therapist and what she did for me because it was something I never thought I would get back.”

I went on to ask Vicky if she has been able to connect with other young adults who have CRPS, but sadly she has not yet been able to. This is a similar experience with many other young adults with CRPS, and one of the reasons we started this blog sequence. Vicky shared some of the comments she receives when she tells people about CRPS, “People ask me, “how did you get this, you’re so young?” What they don’t understand is I didn’t ask for this, but people have gotten through this.” Connecting with others is difficult and it is something you always have to continually explain.

“People ask me, “how did you get this you’re so young?” What they don’t understand is I didn’t ask for this, but people have gotten through this.”

For being diagnosed only nine months ago, Vicky is incredibly optimistic. Vicky completed her first photography job since being diagnosed with CRPS and said the results were fantastic. She edits the photos to have a painter-like quality to them; it is her passion and CRPS will not stand in her way. It is only upwards from here for Vicky.

CRPS Retreats and Gatherings – The Positive Impact of the YA Retreat

A group picture from our retreat for young adults with CRPS, which left quite a positive impactWritten by Guest Blogger Melissa Lanty

RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up!

The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing.  By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can do.  I saw the scariest form of RSD/CRPS through my cousin, so when I was diagnosed with the same disease I was terrified.  I joined support groups and found pages to follow online, but most of the time I met with people they were all in very different life stages than me, and the advice I was given was often about what I should give up, what I needed to give into, how to adapt to the fact that I am now disabled.

When I got the RSDSA newsletter in my mail and saw the page for a young adult with RSD/CRPS retreat, I immediately went to the website and signed up to go.  It wasn’t until later, when I realized it would be a 4 hour drive, that I started to worry it would be me and maybe two other people sitting around talking about all the things we used to do.   I couldn’t have been more wrong.

I arrived at the beautiful Shawnee Inn on the Delaware River Gap, after getting myself lost for only 10 minutes, and met 9 other amazing young women with RSD/CRPS.  After throwing my stuff in a room, I joined the girls with the basic intros, where we are affected, swapping stories of what we’ve tried, thought about trying, and etc. about this disease.  After talking for a while I realized that this felt nothing like the support group meetings I have been to.  Instead of talking about what we can no longer do, we all talked about things we do despite this illness.  We laughed a lot as we shared our stories and experiences, by the end of the weekend my chest was actually sore from all the laughing we did.  For the first time since my diagnosis I met other people who deal with CRPS in a similar way as me.  People who work a full time job, go for hikes, kayak rides, boat, swim, travel, and push through the pain like I do.  We shared stories of bad flares and doctors who didn’t believe us, like I had with others I had met, but we also talked about college experiences, traveling, working full-time being on our feet all day, doctors still treating us like children, and so many other things that didn’t really apply with others I had met with RSD/CRPS.

When the weekend was over, I was sad to head back home and leave the group.  Even though we had just met it felt like we had known each other for years.  I sincerely hope there will be another retreat for this group again in the future.  I look forward to more adventures with these women, and hopefully others to join us too.  I’ll have to remember to be ready for anything, because this group lives life to the fullest for sure.

You Know You’re a Hospital Kid When… Life with CRPS

What is it like being a hospital kid with CRPS? Read Melissa's article and see if you can relate to her CRPS/RSD adventuresWritten by Guest Blogger Melissa Lovitz

This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty.

When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count.

When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got excited about making toga costumes with hospital sheets and having photo shoots with the other girls in the clinic. My main priority, aside from going home, was befriending the nurses so they would steal pillow cases for us to tie dye or extra ice cream cups at lunch.

Every so often I reminisce with a few close friends, who I met in the hospital, about out “those days.” Many of us are in remission or have found ways to cope with our illnesses outside of frequent appointments and emergencies. Others are still struggling, but have an amazing network of family, friends, and doctors who are there to support them every moment of their journey.

There’s something special and unifying about being a “hospital kid.” There’s something comforting about knowing that other people “get it.” There’s a relief that comes with not having to explain yourself. There’s a sensation of belonging that is revitalized every time I text, “I just smelled Purell” and get a response that reads, “OMG yesss” or “I know what you mean.”

When I was talking with my friends, I realized we all had fond memories of our nurses knowing our favorite shows, what we were studying in school, or which activities we were excited to go back to! We all had jokes about which arms or veins were best for blood draws and IV’s. We were all confident we could navigate the hospital so well, perhaps better than our own towns, that we could give directions to other people even to this day; most importantly we knew approximately five ways to get to the cafeteria!

So, when I asked my friends to respond to the phrase, “You know you’re a hospital kid when…” here’s what they said:

You know you’re a hospital kid when… 

1. Your biggest allies are the nurses.

2. You almost always anticipate that your plans will fall through because of an unexpected trip to the ER (or an appointment you forgot about).

3. Random things like the smell of Purell, concrete staircases, or writing your order with a golf pencil at restaurants remind you of the hospital.

4. Your best friends are people you met in the hospital, and over a decade later you still keep in touch.

5. You laugh whenever someone asks you to rate your pain on a scale of one to 10.

6. You’ve perfected realizing when someone isn’t really “fine” because you too perfected looking “fine” when you’re not.

7. Even though it’s a bit twisted, you get excited if you learn someone has the same condition as you.

8. Getting blood drawn or an IV is “no biggie.”

9. You watch “Grey’s Anatomy” and scream at the TV because that would never happen in real life!

10. Your hospital stories are so intense or dramatic that most people don’t believe you or think you’re exaggerating (e.g., “I relearned how to walk twice by doing PT/OT for eight hours a day for six weeks – twice! It was more difficult than the conditioning we do at gymnastics practice.”)

11. You can explain the spoon theory with more accuracy and detail than your actual homework!

If you ask most hospital kids, they’ll say their upbringing inside the walls of the hospital was definitely not traditional! They’ll probably tell you that they’d never wish chronic illness on anyone, but in hindsight they can’t imagine their lives without their stories of medical struggles and victories. Our illnesses don’t have to define us, but the definitely shape who we are and how we encounter the world.

The Importance of People – Friends with CRPS

By Samantha Barrett, Special Events Coordinator

I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more.

Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there was something that endlessly frustrated me. If there were other people out there with this, and people were allegedly getting diagnosed more frequently, why hadn’t I heard of it before? Why didn’t I know anyone with it?

That’s when I started to want to find others with it. The very first person I met with CRPS/RSD is a great friend of mine to this day. Jodi and I found each other ultimately by accident. I had a fundraiser and she was from a CRPS friends- Sue, Samantha, and Jodi on a plane to chronic pain camp for kids. A great friend and great human in each of themsurrounding town. Her mom, the notorious S-U-E, brought her to my fundraiser and we got to connect. It blew my mind that someone that was close to my age (and lived near me) was going through everything I was going through. She went off to college while I was still in high school, so communication became limited to Facebook. But, I always knew if I needed to talk, she’d be there. Now that we’re both older, we get to chat a little more frequently. Our schedules don’t always align, but we cheer each other on and try to check in on each other. We’ve been through some incredible moments and some of the lowest moments of life together. We have inside jokes that no one would understand. We’re able to discuss anything and everything. Topics that could make other people uncomfortable we openly chat about, since we’re both still constantly learning about living with chronic pain syndromes among other things. Her friendship is not something I take for granted. She is truly a lifelong friend.

I had a Twitter account for my concert series. I was constantly meeting people through it. I would chat back and forth with people, and then realized there were a fair amount of people that were close to my age and living with this. One of these people was Emma. Emma lived in a town with the same name as mine, but over in Michigan. We laughed about traveling to the “other” town name to see each other. We eventually became texting buddies and got each other through a lot of life changing events. We called each other “twin,” because our stories and lives were so incredibly similar. I knew that I could text her to talk about the show “Total Divas” just like I could text her during a moment of anger/sadness because of pain or life.  In “Total Divas,” the Bella Twins are the featured as some of the main cast members. Since we called each other twin anyway, she became Nikki Bella while I became Brie Bella. We had a bit of pseudo-twin telepathy. She would text me knowing something was wrong without me saying anything and vice versa. We were able to FaceTime a few times just to talk about live and how we hoped to meet each other one day. She was always a great friend to me. I don’t doubt for one second that she helped me get through some incredibly tough moments. We still haven’t been able to meet, but I’m optimistic about the future.

Ginger, Samantha, and Kerry at the Achilles Walk. What started as an internet friendship became a situation of two new friend(s)I have some other friends that I was able to virtually meet and then meet in person. Kerry, Ginger, Rachel, and Taylor are just a few. I’ll never forget meeting Kerry. We had always talked on Twitter, but Taylor and Samantha became instant friends after only a few months of texting and one in person meetingthen I heard her check in to the Achilles walk about 3 or 4 years ago. I turned around and felt like I was meeting a celebrity. I was so excited to finally meet this friend that I had been talking to online for so long. I met Ginger in person a year later at Achilles and instantly felt like I had known her forever. The three of us even united to do a live stream event, even though I FaceTimed into their Periscope session. We frequently discussed the three of us getting together, but schedules don’t always align. Rachel and I met through our CRPS/RSD Twitter accounts. We then became pen pals. We also always talked about meeting. I remember the day that I received a letter from Rachel with some very serious news about her health. I panicked for her and found her number so I could text her and try to be there for her in a way that was a little quicker than snail mail. She told me what she was about to endure, and we texted back and forth for the rest of the evening. I remember the first letter I received after her  procedure. It had gone very well and she wasn’t experiencing the pain that she had been before. I was so happy for her. We also met at for the first time in person at an Achilles Walk. We didn’t get to chat much, but it was so nice to see her in person. She recently got married and I felt like I was living through her, I was so incredibly happy. And then there is Taylor. Taylor and I had been texting buddies because of things related to my work. I hadn’t known she was close to my age initially. Then, we found out we were going to meet and we were so excited. The day I met her, I felt like I met a long-lost sister. We ran (well, we hobbled) toward each other and gave the biggest bear hugs that we could tolerate. We talked, and talked, and talked some more. It was an instant connection. We text each other now when we can, since we live on opposite sides of the country, but I don’t doubt for a minute that the next time we see each other, it’ll be a lively reunion. Not only was she an instant friend, but instant family.

Now, what is the importance of all of this? People. People change people. Knowing even one person that can relate to or understand what you’re going through is so important. While none of us want other people to have to live with chronic pain, having another person that lives with CRPS/RSD that you know really can help validate what you’re going through. Once I met/started talking to other people living with CRPS/RSD, I felt much less alone. I felt like I had fellow soldiers in this battle with me. These people don’t judge, they help. It’s truly an overwhelmingly incredible feeling. Social media has become a great platform for this, especially with online support groups, but there is something about meeting people in person that makes it even more real.  One friend can make a huge difference. That’s one thing I love about events- people get to meet and make these incredible friendships. The television “Girl Meets World” had the on-going lesson that people change people, and it’s so incredibly true. While I still have friends without CRPS that try to be understanding to my situation and are incredibly supportive, it is different to talk to someone that can truly understand what a text that says: “My body is on fire today, but I’m fine. How are you?” means.

I’m so excited that, for the first time, RSDSA will be helping young adults meet and interact. The first Young Adult Weekend will not only focus on forming these friendships, but will also help facilitate discussions about things that young adults are concerned about. It is going to be such an exciting time. This is the first time we’re doing something specifically for those people that aren’t children but are still getting used to the adult world. College, jobs, relationships, families, living independently, and anything else that runs through the minds of young adults is up for discussion. Plus, there will be some great activities to partake in. I am picturing people that have been virtual friends for years finally getting to meet in person and I already have goosebumps!

And then, of course, for teenagers and older, we’re bringing Treating the Whole Person: Optimizing Wellness to Nashville, TN. The reception the night before really allows people to get to mingle and make friends, while the conference is helpful with different tips and educational opportunities to try to help people with CRPS/RSD live their best lives. We even have a caregiver panel to help the amazing people that help take care of us day in and day out. We’re expecting this conference to completely sell out, and it’s doing so quickly, so do not hesitate in registering and booking your room!

If I mentioned you in this blog, thank you for being a friend. If you weren’t mentioned, it’s nothing personal. I’ve met so many incredible people that I had to cut part of my blog since I went well over 3000 words. To those of you that I haven’t met yet, I can’t wait to meet you. Connect with others! It’s more important than I can even explain. If you need a friend, you’ve got a friend in me.

More than one friend Samantha has made because of CRPS. Knowing people makes a difference. All of these people have become friends.

Fear of Distance – RSD / CRPS and The Journey Away from Home

Guest blogger Rachel writes about her fear of distance and being away from home with RSD CRPS. But she is working at Disney. Can she make it the happiest place on earth despite RSD? Written by Guest Blogger Rachel Ehrenberg

Rachel is a member of the RSD / CRPS community that had the opportunity to be a part of DCP, or the Disney College Program. She details what it is like to be so far away from home, for the first time, with CRPS.

997.2 miles. 997.2 minutes. 16 hours. These are just numbers that form a distance to most people. But when you are living with a chronic illness, 997.2 miles is a long way from home and your comfort zone. That’s exactly what it was for me. In January, I packed up my things and moved from South Jersey to Orlando. I was beginning a journey of a lifetime and starting the Disney College Program.

I suffer from a chronic illness called Reflex Sympathetic Dystrophy (RSD)/ Chronic Regional Pain Syndrome (CRPS). There are many symptoms of this disorder, the most common being extreme pain and hypersensitivity. And with these symptoms come flare-ups where the burning pains gets so intense that it is hard to move.

The Disney College Program is a seven-month internship where you are assigned a role and work at Walt Disney World for that time. My role was in the entertainment division. Going into this program I was scared that my RSD would limit my abilities to work for the company as it has done so previously in regular everyday activities.

So here I was, 997.2 miles away from home, by myself, living with new people who knew nothing about my illness. I couldn’t help but think that whoever I told would judge me or just wouldn’t care or understand. I was unsure I would be able to handle a flare-up in this new environment.

When I was at home and had a flare-up, I would lay down either by myself or I would be with friends who would help me calm down. I also had a more relaxed schedule that allowed me to take time to just wait until the flare ended. There is no time to wait when you work for Disney. I was working up to 10-13 hours a day and around 45 hours a week. The added stress of a new environment and job just provoked my RSD / CRPS causing me to have flare-ups more often. If I were not working I would stay at home and miss out on things with my roommates because I was in too much pain to go out.

At work, I would be on my feet all day. Staying there began to feel impossible for me. I had no idea how I was going to get through 7 months. However, I was so determined not to let my RSD / CRPS control this amazing opportunity that I worked hard and figured out ways to cope with flare-ups in a different way than before.

A common trait that a lot of people with a chronic illness have is that we don’t talk about it to others that much. We often try to keep it hidden, especially from people who are new to our lives. For me personally, it has always been hard to let my guard down and become vulnerable enough to explain my condition to others. I never know how someone will react to it or if they will want to continue to be my friend. Back at home it took my over a year to finally get comfortable with a group of people to tell them about my condition. I didn’t have over a year at Disney.

The first step I took in dealing with a flare-up was to talk to the people who I was constantly around and explain to them my disorder and what they could do when I am having a flare-up. Some people I told wee extremely supportive and I could tell they were legitimately interested in listening to me. However, it was hard when I would tell people and they would act like I was just being over dramatic. I would become extremely self-conscious of my pain around those people. In those moments, I felt defeated and I wanted to quit.

The next step I had to take was to realize that I am stronger than I think. And this is the case for most people. For the longest time, if someone told me I was strong, I would just push it off and tell everyone that “I am not strong, I just have no choice but to live my life as it is”. In a way that is completely true. Living with RSD means living with pain every single day. But I have to continue with life. I refuse to just sit at home all day. So when I had these difficult moments in Florida, I would remind myself that I am strong. I am living my dream despite this disorder.  I would look around at work or at my apartment and just be in disbelief about how far I have come. I would never have imagined being able to move to Florida and work for Disney when I was diagnosed.

The last step I am going to talk about is arguably the hardest. This is an issue that I have struggled with for a while now. This issue is letting myself be vulnerable. I absolutely had to learn how to speak up. There was one night in particular where I was out with friends in the parks and I knew I could no longer walk around. My pain level had increased and I was on the verge of crying. I decided to separate myself and go home. Although I missed out on the rest of the night, I knew that my health was more important. But by doing this, I was really able to learn that I did have friends that cared about me. I spent the rest of the night dealing with my flare-up with a friend who was there for me and helped me through it. My vulnerability definitely came out. I would usually try to stay by myself and act like I don’t need any help. But the truth is, I do.

7 months may seem like an incredibly long time, and it was at certain moments. But I am no longer afraid leaving where I am comfortable and trying new things. Living with a chronic illness makes things harder at times. However, there is no reason why any illness should define what a person is able to accomplish. 997.2 miles seems like nothing now.