Camaraderie of Chronic Illness

For those of us with a rare disease or other chronic illness, it doesn't take much to relate to one another regardless of the diagnosis. Our commonalities create an instant bond, an instant understanding of another's life with chronic illness. We don't need the same diagnosis or even the same symptoms or experiences. We experience enough and know enough to have an idea of what life is like with that condition.

We Share a Medical Life

• We share many of the same symptoms across conditions.

               It isn't uncommon for us experience the same generic symptoms that sweep across the board of conditions. We often simply feel sick - that blah icky feeling that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. Within subgroups of conditions, we share even more common ailments. Those within the GI condition group experience some type of stomach upset whether it's nausea, pain, or bowel issues. We have additional uncommon symptoms but we have a primary source of shared symptoms with different causes. But no matter what - we can relate.

• We share the balancing act between the medical and our daily life

              Our days are occupied with  an abundance of medications, medical appointments, and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday life. We understand choosing between one activity over another because our body may not let us complete both choices.

• We share the struggle of disclosure

              Disclosure can be a tricky subject. Knowing what and when to share with the various groups of individuals in our lives isn't always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.

We Share a Personality

• We share important life lessons and virtues

               We know what it means to persevere, to have inner strength and determination. We've learned what it takes to survive and to survive on a daily basis. It takes real strength to not give up; to keep chasing our dreams and to make the most out of life. It's hard business keeping up with life when you're sick yet we manage to everyday.

• We share a deep appreciation for life and achievements

               We've learned not to take life for granted. We've all lost many loved ones with similar health issues. Repeated losses teach us to cherish everyday, especially the good days. And on those good days we're extremely proud of our accomplishments. It isn't always easy to achieve your goals when you're dealing with a chronic illness. We appreciate how far we've come in life in the midst of health issues and make the best out of each day that we can.

• We share with one another and support one another

               No one knows as well as another chronically ill person the difficulty that one faces on a daily basis. We share our stories with one another and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.

You're Not Lost: How to Find Yourself When Life Takes a Detour: Amy's Story

This is a guest post by Amy Oestreicher

Sometimes, the best way to find yourself is to just get lost. When you don't know where you’re going, the world can be a scary place. That’s what drives our to-do lists, our calendars, our goals and our life plans. I know this all too well, as someone who had a minute-to-minute agenda, planning and plotting every major milestone in my life from birth to bachelor’s degree to Broadway debut. But sometimes, life takes a detour. Something that a 2016 yearly planner can’t always account for.

What’s a detour? Google has an answer for that:

noun 1. a long or roundabout route taken to avoid something or to visit somewhere along the way. "he had made a detour to a cafe"

verb 1. take a long or roundabout route. "he detoured around the walls" A detour, according to its French origins, literally means a change of direction.

I, however, have my own definition of a detour:
A detour is a curve in the road of life, a bump in a path, a big sign in the middle of your trip that says, “sorry, you have to go THAT way.” Nobody expects a detour to happen in life. It’s what happens when we think we have things planned and all figured out…and then we’re thrown a curveball.

A detour is many things – unexpected, a nuisance, difficult, hard to grapple with, frustrating, – but it can be beautiful. Sometimes, we can’t appreciate how beautiful our detour was until we’ve made multiple twists, turns and deviations in our “set-out” path. Sometimes, we can’t realize the beauty of our detour until we spend a bit of time traveling it – we need to give that detour enough time to form a story of its own. After all, every good story comes from a detour. What would be so funny about a forum if “A Funny Thing [never] Happened on the Way to the Forum? (It’s a musical, FYI.) By sharing our stories, we make sense of our “detours.” We reframe our “derailments” as the intricate pathways that make up who we are today. When we tell others about our detours, we become travel partners on these journeys with no straight path. When we know we’re not traveling alone, that road becomes an adventure. Who can say they’ve never had an unexpected glitch in their life-plans? That’s a detour.

What detours force us to do is explore new opportunities. When we can’t go in the direction we anticipated, we’ve got to switch gears and adapt. We have to resource inner strengths that we never knew we were capable of accessing. When we achieve the “unthinkable”, we discover who we really are. Even still plagued with wounds, scars, and some medical issues that haven’t been resolved, I’ve found beauty in the detours. If I took away all of the setbacks, hurdles, frustrations and detours, I wouldn’t be who I am today. Telling my story made me realize the true beauty of my detour. That’s what makes me a Detourist.


What’s a Detourist? A detourist travels along detours – simple enough. But in addition, a detourist embraces those unexpected routes as opportunities for growth, change and self-fulfillment. I’m living proof that a detour can lead to unexpected blessings. As a detourist, I look for the upside of obstacles. I welcome the unexpected change in my “thought-out” life, and see what opportunities may arise.

Because of my ten-year surgical marathon, I’ve written a one-woman musical about my life, Gutless & Grateful, I discovered the world of mixed media art, I've met amazing people, discovered incredible new experiences, and have been through the worst to make room for the best. Starting a Movement How do we make the best of a detour? Sometimes, we just need to hear that other Detourists have navigated their paths triumphantly. What I’ve experienced is, the more inspiring stories we hear about Detourists turning an obstacle into an opportunity, the more empowered we are to transform our own lives and have confidence that when life DOES surprise us, we’re capable of getting through anything. #LoveMyDetour Now, I want to inspire people to flourish because of, rather than in spite of challenges.#LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. That’s why I’m spreading #LoveMyDetour around the world.

With that in mind, I’d like to leave you with six ways to love your detour: 1. Savor the element of surprise. Straight paths are boring. 2. Find one beautiful flower along the path and name it after the detour that led you to it. 3. Keep traveling to see where it leads. 4. Find a new friend along the path. 5. Use it as a chance to locate your internal compass. 6. Put the pedal to the metal and take the best road trip of your life! So how do you get un-lost? You know how you realize you're normal once you realize NO ONE is normal? Well you get un-lost when you realize were all detouring together. If we keep going, we're not lost. We're Detourists. Thriving Through Detours #LoveMyDetour is a campaign inspiring people to flourish because of, rather than in spite of challenges. #LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. “Detours” have created the most scenic surprises in my world. Now, I envision a world where “detours” in life are everyday blessings. The road is open with open possibility, with voluptuous curves, with wandering wonder. Safe travels, Detourists!

 Learn more about creating compassion through our detours at amyoes.com.

Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, speaker for RAINN, writer for The Huffington Post, award-winning health advocate, actress and playwright, eagerly sharing the lessons learned from trauma through her writing, performance, art and speaking. As the writer, director and star of the Gutless & Grateful, her one-woman autobiographical musical, she's toured theatres across the country, earning rave reviews and accolades since it’s BroadwayWorld Award-nominated NYC debut. As a visual artist, her works have been featured in esteemed galleries and solo exhibitions, and her mixed media workshops emphasize creativity as an essential mindset.

Amy’s “beautiful detour” inspired her to create the #LoveMyDetour movement, a campaign inspiring people to flourish because of, rather than in spite of challenges. As the Eastern Regional Recipient of the Great Comebacks Award, Amy has spoken to hundreds of WOCN nurses on behalf of ostomates nationwide. She is a regular lifestyle, wellness, and arts contributor for several notable online and print publications, and has written for over 50 online magazines and blogs. on Her story has appeared on the TODAY Show, CBS, Cosmopolitan, Seventeen Magazine, among others.

Amy's passion for the arts as a means of healing and expression led her to devise storytelling workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Center Foundation, and The League for the Advancement of New England Storytelling.

Determined to bridge the gap of communication between wellness resources on college campuses and students, Amy is currently touring college campuses with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre.

For information on keynote presentations, private coaching, workshops and signature talkbacks, visit amyoes.com and follow her on Twitter Instagram, Etsy and Facebook.

When You're Alone

I never truly allowed myself to believe I'd marry. I didn't think I'd find someone who would and could love me as much as I needed with my chronic health issues. I would require caregiving on a frequent basis and likely at some point, I'll require it on a much more regular basis. That is a lot to request from another person, especially from the very beginning of a relationship and a marriage. Could I find someone who would be willing to take on this responsibility from the get go? I did and I thought my life was complete...or so I thought.

From a set of unfortunate circumstances and events, I lost my trust and the life I knew had changed and I couldn't change it back. My complete life was being torn apart and divorce was on the horizon. I have a new life to fulfill on my own now.

Facing a life alone with chronic illness and the possibility for a cancer diagnosis again in my future was a terrifying choice but it was a choice I had to make. I felt completely alone in the world. Questions raced through my mind, filling my heart with fear and anxiety.

What would I do if my health worsens? What would I do if I developed cancer again? What would I do if I couldn't work anymore and support myself? What would I do? What would happen to all my dreams? Can I do it all alone? 

 Making that choice was the hardest part.

Once I made the choice, as difficult as it was, a relief began to set over me. A relief that would grow the more I shared my concerns with my friends and family. A concern that was fettered away by more and more people. My primary support system offered reassurance and oaths to never leave me alone in this world. I would be taken care of when the time came. In addition, I will be purchasing long term care insurance to ensure the financial burden of caregiving is provided for without need from others. I'm doing everything I can to ensure my own well being is cared for - by myself or by caregivers.

I'm learning more than I ever expected during this process. It never ceases to amaze me how much we can never truly prepare ourselves for all that we will encounter in life though we try.

I'm learning to value and fiercely protect my independence. To stand on my own two feet and create the life I want for myself is the greatest accomplishment I'll achieve and I am excited to create a masterpiece. To lose my independence is now my greatest fear. I will fight tooth and nail to maintain and support myself and will gladly do so. My eyes have been opened to the joy that is self sufficiency and the fulfillment that accompanies it. I'm finding that independence is much more than financial independence - it is the emotional and mental survival in the face of destructive forces.

I'm learning to cherish my support system more than ever. I'm gradually becoming accustomed to turning to the people in my support system when I need a shoulder to lean on. I'm discovering that independence isn't not leaning on anyone ever but discerning between periods when I can handle an emotionally tough time on my own and an overwhelming period when I need my support system's aid. I'm letting my people be there for me and am gratefully returning the favor.

No matter what is yet to come, I'm looking forward to tackling each issue with a new set of skills that I continue to hone. And I've realized, we're not alone after all - not as long as we let others in.

Anxiously Awaiting

The last year has been a monsoon of emotions and personal events that included a long bout of depression from increased health issues, the death of a beloved great uncle, and the emotional loss of individuals I once deeply cherished. With the ups and downs of the last year, I embarked upon a path of self discovery and self transformation. I am finding peace within myself and loving every moment of it. However, patience is by far not my strong suit.

There is a great number of things I want to accomplish this new year yet I'm constrained by time. Time inhibits my ability to complete my actions, my goals as quickly as I'd prefer. I must wait for the right time or for the process to be completed for each personal goal. I'm left anxiously awaiting the passage of time as I fervently work toward creating the life I want.

There are times when my eagerness surmounts in an exhausting, terrifying ball of anxiety. It catches in my throat, words can barely be uttered. Tears well up in my eyes, desperate to escape. My chest tightens, constricting upon itself as my mind races trying to calm itself. I repeat my self soothing mantras, frantically reminding myself that it is only anxiety...I'm not having a heart attack. Although it feels like it.

It's easy for us to get ahead of ourselves when we are so intent, so earnest for the arrival of what we want. It doesn't matter what it is, we tend to want what we want when we want it. It's hard not to jump ahead and just have what we want. We think if only we could fast forward time! The world doesn't work this way though. We need to wait for others, we need to allow time for the process, or we need to move forward in a systematic way - achieving one step at a time. But really what we need is to simply learn patience and enjoy the journey. The journey is what fulfills us after all. The ability to look back and realize I did this, I accomplished this, this was me!

Learning patience isn't easy. As a highly impatient person, I feel as though my strides in learning patience are minuscule even though I notice a difference in how far I've come in the process.

When the anxiety of impatience has a stronghold upon me, I have to remember a lot.

• I remember it's merely anxiety. If I want to calm myself, this is the vital first step. Until I understand it's just anxiety, my mind will keep racing and heaving more anxiety upon me. Self talk and breathing are essential in calming my anxiety provoked fears.
• I remember what I'm doing to achieve my goals and what I still need to do. I map it out. Where I've been, where I'm going.
• I remember my plans for reaching the next steps in my plans. Without steps lined out, I'm simply waiting without direction.
• I remember I'm doing everything I possibly can. Some things are out of my control but I'm doing what is within my control. I'm not passively sitting and waiting. I'm taking action.
• I remember it isn't always the right timing. I won't be able to obtain solutions until I can gain more answers. Answers that are only available when the timing is ripe.

The next time the anxiety of waiting hits, remember where you are, where you've been, and where you're going. This helps to keep the small details in perspective to the larger picture at hand. Although the journey of patience can be infuriatingly frustrating and difficult at times, in the end it is far worth allowing the process to take its course. We gain great insight, wisdom, and skills when we push the anxiety aside and continue on our path.

An Open Letter to Medical Professionals

Everyday we touch the lives of others, whether it's an encounter that's so brief we merely notice it or an ongoing relationship through the years. No encounter is too small. For good or bad, our interactions can be very impactful upon another. Encounters with medical professionals are no different.

As a chronic illness patient, I am always nervous about encounters with my providers - doctors, nurses, technicians - as you hold great power while in your care. Those of us with chronic illnesses have countless encounters and experiences that scar us or lift us up during our medical trials. We constantly wonder if our providers will treat us with care and compassion or will patronize and ridicule us for our needs and fears. Unfortunately, chronic illness patients are far too familiar with both experiences.

Poor experiences with providers multiply our already existing fears. Chronic illness patients have encountered it all. Coldness or warmness, we notice how you look at us, whisper about us, and care for us. We're usually already on high alert, many of us have been scarred from years of testing, procedures, and whatever else the hospital typically holds for us. I developed PTSD during my first year of hospitalizations and surgeries. My entrance into a hospital capitalizes on my PTSD. It cripples me, fearful and suspicious of providers until my trust is gained. I've been ridiculed by providers for the coping techniques I utilize during procedures. I've been patronized by providers for my fear and low tolerance of pain. My death curdling cries for help have been ignored with snide remarks, my life placed on the line of an ego.

When we have a positive, helpful encounter it lifts our spirits in the midst of some of our darkest times. During the course of a year I had multiple stays at my local children's hospital. Although I don't recall many memories from this time and the ones I do recall are not pleasant memories. However, one memory stands out amongst all the others. The memory of one of my nurses has remained with me for 20 years. He treated me with great kindness and understanding. I felt safe in his care, particularly during a time that I was angry and mistrustful from a year of unceasing pain and medical traumas. His impact was so great upon me and our patient - provider bond so strong that my parents and I attended his wedding a year after my hospitalizations ended. His appearance and our interactions are hazy within my mind, but his influence in my physical and mental health during that period remains with me. The core of our interactions remind me that there is a light, even if small, that will help to guide us through darkness.

Fast forward six years later to my second year of multiple hospitalizations. As a young adult, the capacity for my memory has improved since my childhood hospital years. I am reminded of 4 nurses and technicians who aided in my emotional coping during my physical recovery from surgeries, poor health, and countless procedures. I underwent a full round of hyperbaric oxygen treatments and was cared for by two technicians whose humor and compassion actually let me look forward to my treatments. I was distracted from my worries, fears, and medical issues during the long treatments confined in that chamber. And when I returned from a procedure I often would find a technician hiding out in my room during their breaks ready for more laughter.
Although I liked most of my nurses, two stood out from the rest. One of my nurses was able to recognize me by my voice from repeated hospital admissions even before looking at his patient list for the day. His daughter would visit me to help me wash my hair. I looked forward to her visits as one of the most refreshing experiences during my prolonged hospitalizations. Another nurse was engaged to my anesthesiologist. During my many trips downstairs from my 10th floor hospital room to the lower levels of the hospital for my procedures, my nurse and anesthesiologist would have me pass along messages to the other. These messages always provided the three of us with great laughter and smiles and were vital in distracting me from my nervousness about each procedure I was about to undergo.

In dealing with our chronic illnesses, we've spent far too many days in the hospital; we've spent birthdays and holidays there. The hospital is not a fun place for us to be. We don't want to be there. In fact, we dread the hospital even if it's only an outpatient visit. We try to focus on the good experiences. The times we actually are able to laugh amidst our physical and emotional pain.

The care you take in your medical care greatly affects your patients. We notice when you're having a rough day but try to hide it from us, trying to not let it impact your care. Instead finding moments to laugh with us, give a reassuring hand squeeze, a sympathetic ear. We notice when you're exasperated with us, ready to escape from our room and get back to your home. We realize you have a long, hard day. So do we though. We aren't trying to make your day harder, we just want to feel well enough to return to our homes as well.

We find worry and fear in the harsher moments. On your bad days, those tiresome long shifts remember we bond with many of you, finding shared interests or strength in your compassion. We're looking to you for help to get through our stay. Your care makes a difference in our lives - now and in the future.