How Doctor-Delayed and Missed Diagnoses Harm Patients With Chronic and Rare Illnesses

By Sydney Reed

It was Christmas Eve in 2010 when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and my mom sleeping on a cot beside me while I stayed up watching “Harry Potter and the Prisoner of Azkaban” on my laptop. After my release, I was referred to my first rheumatologist, who agreed with the diagnosis but insisted I get a muscle biopsy to support it, despite my obvious physical symptoms.

At the time, I didn’t understand why this evidence was necessary and how important it really was.

I couldn’t believe future doctors would actively try to disprove that I ever had JDM. Medicine in general seemed so much simpler then. A person gets sick and the doctor runs some tests which lead to a diagnosis and treatment… right? I had no idea how complicated things could be nor the barrage of delayed and misdiagnoses that awaited me in the years to come.

Multiple Complex Conditions

Like many autoimmune patients, while the physical symptoms I was presenting were classic in cases of JDM, the way my disease presented itself in my blood work was atypical. This is a problem I would confront multiple times over the next several years, and one I would come to realize can have disastrous consequences, resulting in significant delays in the diagnosis and treatment of serious illness.

Since my original diagnosis, I have developed overlapping and secondary conditions such as lupus, Sjögren’s syndrome and postural orthostatic tachycardia syndrome (POTS). This is another commonality among autoimmune diseases: they tend to come in packs.

Most recently, I was diagnosed with a small pituitary tumor. While the tumor itself is not cancerous, it is secreting an abnormal amount of adrenocorticotropic hormone (ACTH), which has resulted in Cushing’s disease, a serious condition that arises from an excess of cortisol in the body. On top of my other conditions, this led to debilitating symptoms that have had a massive impact on the progress I have made in the years since my first diagnosis. These symptoms would take away many of my basic abilities to function and take care of myself, and turned my life upside down all over again.

Here We Go Again

In May of 2018, after two of the best years of my life since my illness began, I suddenly started to experience a long list of new and concerning symptoms.

These included: absent periods, chronic diarrhea, loss of appetite, sudden weight gain, severe headaches, blood clots, dry skin, facial flushing and swelling, abnormal bruising, hair loss, dramatic muscle weakness and pain, and the most extreme fatigue I had yet to experience.

It took a year to find the 3 mm tumor that was the source of all these issues and another eight months after that to convince doctors this was the cause of my symptoms and begin looking at treatment options that could effectively cure my disease and restore my quality of life.

After a second MRI confirmed the existence of a 3 mm pituitary lesion, I was flooded with relief. I never thought I would be so happy to find out I had a tumor. After that, one of the amazing physician assistants at my primary doctor’s office referred me to a local neurosurgeon.

A week went by with no word from the surgeon’s office when I received a message from my primary care doctor explaining that the neurosurgeon had refused to see me and sent the referral back stating, “I don’t see any convincing evidence of a pituitary disorder here… could consider repeating scan in three to four years.” And with that, I was back at square one again, with no answers or relief for my progressively worsening symptoms and a waning degree of hope.

Unfortunately, this is just one example of many in which a doctor disregarded my symptoms and slighted everything I was experiencing. This one-step-forward, two-steps-back progression would continue for months. In total, l saw 13 doctors in my desperate search for answers and, eventually, treatment. Some of them were wonderful, compassionate and supportive. Others were apathetic, dismissive, condescending, and a waste of time and energy I really couldn’t afford.

In just under two years, I spent considerably more time and energy convincing doctors that something was wrong than I did on receiving treatment. Over and over I was told to be patient while I watched myself deteriorate, and as time passed it became increasingly difficult to maintain my resolve in the face of overconfident doctors. I questioned myself countless times throughout this ordeal. I felt ashamed for “doctor shopping” and worried my symptoms were psychosomatic. Thankfully, I haven’t let those moments of doubt and hesitation keep me from pushing forward. I know my body and I knew something was very wrong. I also understood that if I didn’t keep advocating for myself, things would only get worse, and I could lose years of my life and much of the independence and freedom I had worked so hard to achieve in the first place.

It Takes a Toll

While my situation is frustrating and unfortunate, there is a bigger issue at hand here. The fact is I am just one of an overwhelming number of cases in which patients experienced significant delays and misdiagnosis. According to a report on the global challenge of rare disease diagnosis, the average length of time from symptom onset to an accurate diagnosis for rare disease patients is around 4.8 years, during which time patients will see an average of 7.3 physicians before a diagnosis is made. In a 2013 article by Kaiser Health News, patients safety experts reported, “diagnoses that are missed, incorrect or delayed are believed to affect 10 to 20 percent of cases, far exceeding drug errors and surgery on the wrong patient or body part, both of which have received considerably more attention.”

Serious lifelong illness erodes the integrity between your body and your sense of self, but in my experience, receiving a diagnosis, regardless of the severity, is much easier to cope with than the process leading up to it. Going through this diagnostic process is not just exhausting: it’s traumatic. When your concerns are minimized, overlooked, or worse — when you’re told something is simply all in your head — it can cause an immeasurable amount of mental anguish.

Veronique Mead, a former family physician diagnosed with chronic fatigue syndrome (ME/CFS), summarized the factors that contribute to the psychological toll of a chronic illness, “There’s nothing like living with a disease to truly understand what it’s like — the death-like exhaustion that doesn’t improve with rest, the vulnerability, the fear that a symptom might be life-threatening, the sense that you might keep worsening until you actually die and no one will be able to help you, the side effects, the frustration and desperation when nothing works.”

In addition to the psychological toll, the lengthy fight to receive an accurate diagnosis and appropriate care can have tremendous (and sometimes irreversible) physical repercussions. Patient advocate Abbie Cornett writes in an article about doctor-delayed diagnoses, “While awaiting a correct diagnosis, patients frequently experience worsening symptoms, a decline in overall health and even death. These delays not only have physical health implications, but also cause mental health issues such as anxiety, stress, feelings of isolation, worry and depression. What’s worse, they can significantly lower patients’ quality of life compared with patients who have been correctly diagnosed and are receiving proper treatment.”

The Takeaway — for Doctors and Patients

Going through the process to reach an accurate diagnosis and subsequent treatment over and over again is demoralizing and has understandably left me feeling a little jaded. It undermines the trust that is the foundation of the doctor-patient relationship, but while my faith in the medical system has been shaken, as a chronically ill person, I have no choice but to rely on this system (and the people within it) if I want to survive. Literally.

To any doctors who may come across my story, I hope it encourages you to show the same amount of trust and respect to your patients as they bestow onto you. My health has been my full-time job for the better part of 10 years now. It’s what I eat, sleep and breathe. While I may not have a medical degree, I am an expert when it comes to my body and my illness, and this is true for the vast majority of patients I come in contact with these days. Please appreciate the experiences of the people that put their trust in you and do everything in your power to ensure their faith in you is not misplaced.

And to anyone else who is reading this and going through a similar struggle, I hope my experience is proof that you are not alone and encourages you to keep warring on.

In her book, “Surviving and Thriving With an Invisible Chronic Illness,” Ilana Jaqueline writes, “It is your body and your responsibility to treat it with confidence, intelligence and above all, compassion… if you want the most out of life with chronic illness, you’re going to have to fight for it.” I couldn’t agree more with her sentiment. As much as I loathe this diagnostic process with every fiber of my being, the truth is every time I go through it, I get better at it. I get smarter, and stronger, and all the things that are necessary to become the ass-kicking tour de force my life depends on me to be. I’m choosing to fight with everything I have for my place here, for my quality of life, and for all the things I’ve ever wanted for my life and my future.

I hope you will too.

We Have Just Been Awarded a Grant From The Helmsley Charitable Trust!

Our founder Sneha Dave and all of us at the Health Advocacy Summit would like to thank The Helmsley Charitable Trust for providing us with a $60,000 grant to facilitate six Summits across the nation as well as the second year of our international fellowship program, the Crohn's and Colitis Young Adults Network. With their support, we will build lasting support structures to improve the lives of young adults with chronic and rare diseases all over the world. 🌎♥️

My Journey Trying Diets to Treat My Ulcerative Colitis

Desperately trying to avoid a colectomy, one family tried everything from the raw food diet to ditching processed foods.

By Sneha Dave

Sometimes it’s denial that causes unfortunate decisions. Throughout my medical journey, there have been many options for treatment. Soon those options faded, leaving only treatments unapproved by the Food and Drug Administration. These treatments were diets, which we often find appealing because they make us want to look, feel and simply be better. In many cases, diets are necessary – and the one thing that can save an individual from painstaking medical experiences. Hundreds of diets are on the market, and many come with catchy appeals. When a diet can save someone, is it worth a try?

It all began one day when we were running out of allopathic treatment options. I have ulcerative colitis, and my disease was becoming more and more active by the day. Our final option was to get a colectomy (full removal of the colon). This was a defeating option because there is no "colon transplant," so once it's gone, it's gone. My mother called a homeopathic (natural-based healing) office, and thus began our adventure to solve my unsolvable disease. The homeopathic doctor – who I'll call Dr. Smith to preserve her privacy – told us of all her great adventures treating patients and supposedly curing their problems. She was in shock that I hadn't tried diets seriously, and as a result, I was prescribed numerous diets that would hopefully cure my disease, if not put me into remission.

"Sugar," I recall her saying. "This supplemental drink you're having right now has 19 grams of sugar. Sugar is inflammatory, and you'll be regulating your sugar intake with natural sugars only from now on."

I didn't complain because, after years of drinking supplemental drinks, they caused me to have more nausea than a pregnant woman. But then she went on.

"Gluten is also not going to be part of your diet because it will ultimately roll up into a ball and sit in your stomach, and that's not good for your ulcers," Dr. Smith said. "You'll also need to refrain from excessive salt and oil for the next couple months."

My mother was all up for it, and I walked out of the office with my jaw on the ground. I couldn't believe such a diet could even be remotely possible! This experience foreshadowed what was to come in the next couple years. My mother and I went to the nearest nutrition store and bought everything from cardboard to plain plastic and I ate it, simply horrified. So the diet began, and I was craving food I wouldn't have even considered prior to being introduced to the diets. I was on numerous diets at once, but refraining from certain foods was making me feel crazy.

The gluten-free diet was flaky and tasteless, and it nearly brought me to insanity by the end of the second month. Combined with additional restrictions, I lost weight quickly. I didn't have an appetite then anyway, and having to refrain from essential taste-bud pleasers made me choose to skip meals instead. When my weight continued dropping and my health didn't improve, we stopped the diet. We went back to Dr. Smith once more to get her opinion. She talked about a no-processed food diet, which was manageable, although not ideal.

"I will also be prescribing you homeopathic medicine that will help on top of the no-processed food diet," she said convincingly. "You see, processed foods contain chemicals that alter the body system."

We tried it, and unsurprisingly, nothing had happened after a few months. At the same time, I was still on allopathic medications. Unfortunately, my parents and I were in severe denial that I needed to get my colon removed, and we were going to try anything to save it. We stopped going to Dr. Smith, and my mom searched online for anything that could revive my body. She finally came across a renowned raw food diet blog, which ended up leading to a year and a half of pure misery and resentment. The raw food diet is a drastic option that, my mom told me, has brought many people into remission.

At one point, I remember asking, a bit sarcastically, if I could get some real food to eat. "I washed some peaches and plums," my mom said. I ate them, and they were actually really delicious, but then I was presented with steamed sweet potatoes and avocados – and no salt, which prompted my complaints. The next day, I was given fiber-free vegetables and fruits, and they were all in raw forms only. No baking, just steaming or freshly sliced. During this period, my mother frequently found me sneaking in the cabinet to have a gluten-free pretzel or two. We were terrified about what would happen if this diet didn't work.

Eventually, my mom and I went to a health center in California that offered natural-based healing. We made the extreme decision to visit this center because the allopathic treatments had failed me, and there was nothing left to try before the permanent, final option. At the health center, I would eat a simple diet consisting of no salt, sugar or overly cooked items. The facility was mostly based on the raw food diet, but there were also slightly cooked meals for patients like me who couldn't tolerate uncooked vegetables.

Soon after my arrival, while exploring the neighborhood, I remember stealing cookies from an open house because I was so desperate for food.

Every day while I was at the center, the doctor took vitals such as blood pressure and measured my weight. Each day I lost weight, and each day we became increasingly nervous. When I arrived at the health center, I weighed a little over 6o pounds, and by the end of the second week, I was 57 pounds – far too little for a 13-year-old in eighth grade.

The weight loss became a concern for my dad, a doctor, who was trying to monitor my health long distance, as well as my doctor at Riley Hospital for Children, who wasn't overly supportive of this extreme natural food diet but thought it was OK to try. I had to keep myself extremely mentally strong because my body was going through a withdrawal stage of all the chemicals and "bad stuff" in processed foods. But still we continued to wonder – and hope: Was it too late to reverse my disease? Could it even be reversed?

During a class at the center, I remember one physician saying: "No salt. No sugar. No oil. No processing. All natural."

I thought to myself: Do I want to live like this for the rest of my life?

Ultimately, it became clear that the raw food diet wouldn't control my disease, and my mom and I left the health center earlier than expected.

My weight was too low at the time – 57 pounds was beyond unacceptable. Before we headed out of California, we went to a restaurant and I had a buttery, salty grilled cheese sandwich that couldn't have tasted any better.

Trying these diets took two years, but it did give my family a sense of comfort; we knew we had tried everything before deciding to have my colon removed. Plus, we learned a lot about the amount of processed foods that surround us and how natural diets are proven to keep people considerably healthier. Something good always comes out of a negative situation. And even though this diet was just buying time, I learned important information about food intake that's impacted my food choices to this day. I'm still grateful to have tried the raw food diet and encourage anyone to try their last options before deciding to undergo their final option – be it a colectomy surgery, like me, or something else.

Thank You to the Cystic Fibrosis Foundation!

We would like to give the BIGGEST thank you to the Cystic Fibrosis Foundation for making us an awardee of their 2019 Impact Grant! 🎉We are so honored to receive this grant and plan to use it to create virtual components to our events which will allow patients who are unable to attend our events in person the option to attend and participate remotely wherever they are. Once again, thank you to the Cystic Fibrosis Foundation! With your support we will be able to bring even more young adult patients together and ensure that no one is left behind 💜

Registration Now Open to Young Adults for One-Day, Multi-State Health Advocacy Summits to Empower Patients with Chronic Illness

SAN FRANCISCO - July 22, 2019. Registration is now open to patients ages 13 to 30 who live with a chronic or rare disease and would like to attend one of the free events in California, Indiana, or Texas. The events are hosted by Health Advocacy Summit (HAS), a non-profit organization which facilitates community events to help educate, empower, and connect patients. 

The 2019 lineup includes:

These events are free to those who wish to attend, but space is limited. 

“This is an opportunity to connect with fellow patients, gain valuable information and resources from health professionals and take part in empowering discussions with influential activists from the chronic illness community,” says Sneha Dave, HAS Executive Director and senior at Indiana University. 

Dave, who has lived with severe ulcerative colitis since the age of six, decided to create an advocacy event in 2017 during her freshman year for students like her, coping with a chronic condition while juggling school, work, and independence. The event was so successful, she decided to start her own organization to help fund events like these across the country.

The organization’s first summit brought together 14 students and six speakers from across the US. For many attendees, this was their first time interacting with fellow patients their own age.

More events are planned for 2020, including one in North Carolina.

For event details and registration please visit www.healthadvocacysummit.org. When registering, attendees can make accommodation requests, view the event schedule, and read additional information on the venue location and speakers. 

The Health Advocacy Summit team is dedicated to improving the lives of young adult patients through their events, online support networks, and programs. To learn more about HAS please visit www.healthadvocacysummit.org. 

ABOUT HEALTH ADVOCACY SUMMIT

The Health Advocacy Summits are daylong, no-cost events for young adults (between 13 and 30) with chronic and rare diseases. We want to enable our attendees with the support, knowledge, and skills to become strong advocates for themselves and their communities.  Their mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. The Health Advocacy Summit is a recognized 501(c)(3) nonprofit organization. To donate, visit Securely Giving. 

Learn more at www.healthadvocacysummit.org 

Press Contact:

Sydney Reed

Operations Director, Health Advocacy Summit, Inc.

sydney@healthadvocacysummit.org


Why I Became an Advocate for People With Chronic Disease

By Sneha Dave

Dreamers are given the gift to believe, and for me believing became life-changing.  

I came home from the hospital after losing my entire large intestine in a hard fight with ulcerative colitis. The next day, I gave up, because I felt that I had lost. One week later, though, I received a transformational gift. I am not sure where that gift came from, but it was a fighting spirit.

I have always had an incredibly supportive family, but I had no one who could truly relate to what I was going through, and I felt alone in battling ulcerative colitis. Not wanting others with chronic health conditions to feel alone in their fight, I decided to get into advocacy. I also became an advocate because my best friend died of osteosarcoma – a cancer that starts in the bones – and the chronic inflammatory bowel condition Crohn’s disease, and because I lost my childhood to ulcerative colitis. I started a nonprofit organization, the Crohn’s and Colitis Teen Times, became an inspirational speaker and began volunteering to support individuals with chronic conditions.

Becoming an advocate can be as easy as opening up about your illness and sharing your story to educate others with the same condition. Here are some reasons why you should be an advocate:

download (1).jpeg

Being an advocate is simple. The best way to advocate is to not be shy about your medical struggles. I used to have numerous accidents and frequently have to use the restroom, both of which are extremely difficult to talk about, especially with teenagers. In middle school, my peers did not know I had ulcerative colitis, or that in eighth grade I had a peripherally inserted central catheter, or PICC, line under my jacket. In ninth grade, I began telling people about my illness and it became easier for me to attend school, because people understood. While the sympathy I received got repetitive, increasing awareness about a disease was, in itself, very gratifying.

You will gain a great support system. When I recovered from a flare-up of ulcerative colitis, I became involved with my local chapter of the Crohn’s and Colitis Foundation of America. I met a number of people whose medical journeys were similar to mine. I was able to relate to so many people, and I was able to find out about an amazing camp for kids and teenagers with inflammatory bowel diseases called Camp Oasis. When I publicly share my story, even audience members who do not have IBD become a part of my fight. Educating people has been amazing, because I feel understood, and I hope that's created greater empathy for people with these diseases.

You will heal emotional wounds you thought you didn’t have. I have always taken my disease in stride and generally tried to remain positive. However, coming out of my first major surgery, I felt lost returning to school full-time and adjusting to mainstream society. I was emotionally wounded. Meeting people with similar stories was inspiring because I saw their accomplishments and success in spite of the road blocks created by this illness. I realized that there was a life beyond recovery and treatment.

It’s public service. Advocacy serves your own community well through education as you share information on the barriers and opportunities created by your illness. You will feed off the inspiration you give to others. I truly enjoy speaking on behalf of Riley Hospital for Children at IU Health in Indianapolis at Children’s Miracle Network Hospitals' dance marathons to raise money for the hospital that saved my life. Whether you believe in volunteerism or not, it's truly amazing the impact your experiences can have on others.  

It will change your attitude. I have always equated optimism to perspective. As I met more people while attending numerous events, I became aware of how much worse other people have had it. My best friend, who I met at an education conference, and who passed away, constantly inspired me to have an optimistic view on my own disease. Meeting these people and forming friendships became a reason for me to fight harder with my ulcerative colitis. Instead of giving up because of my disease, advocacy became a way for me to be inspired to live life fully.

You’re on your way to helping find a cure for your disease and others. When people hear your story they feel inspired to contribute to finding cures. When you share your journey with your disease, it inspires others to raise funds for good causes. I speak at many Children’s Miracle Network dance marathons to raise money for my children’s hospital, Riley Hospital. 

So How Can You Become an Advocate?​

Start by contacting your local organization that advocates for your illness, and share your interest in volunteering. If you do not have one, create your own group! Engage the one or two people you may know with your same condition or health challenge.

Social media is a great way to follow people going through similar struggles, and to collect and give tips without leaving your home. It can be extremely difficult to find people in your area, as I struggled with that because many people are not completely open about their illness. Furthermore, if you find someone who is insensitive or uneducated about your medical circumstances, speak up. This may, in some instances, even include sharing your perspective with medical professionals.

Come up with a unique idea that will garner attention and in return help people. I created the Crohn’s and Colitis Teen Times, which is a nonprofit organization that provides support to not only individuals battling inflammatory bowel diseases, but all chronic illness sufferers. This is one way you can create that fundamental support system needed for almost every chronic illness. There are so many platforms for advocacy through social media, YouTube or simply educating others about your illness.

It’s my desire to see more people talk about their illness to raise awareness and create more empathy for other individuals with similar conditions. While I longed to be a “normal” teenager, I realize that my struggles led me to this great gift of advocacy.

You are never too old or young to raise your voice for not only yourself, but for many others who are in genuine need of support. Don’t forget that advocacy is a big word with small origins.

Press Release: Local Health Programs Get National Recognition

Indianapolis, IN – On May 24, 2019, the Health Advocacy was featured in Rural Health Models & Innovations, a national collection of successful rural health programs and interventions maintained by the Rural Health Information Hub (RHIhub).

The Health Advocacy Summit provides advocacy resources for young adults with chronic and rare diseases in Indiana, Texas, California, and North Carolina. The program’s mission is to create events across the nation that empower young adults with chronic and rare diseases to become advocates and change-makers in society

Since 2017 the Health Advocacy Summit has facilitated events in three states, including Texas, Indiana, and North Carolina with California being added in 2019. Health Advocacy Summit has partnered with organizations and advocates in the chronic and rare disease space to provide advocacy resources and connections for young adults.

“We are really trying to create outreach to an often forgotten demographic, young adults with chronic and rare diseases. We are especially interested in connecting and providing support to this population in rural communities, where resources and a network of support may not be as accessible,” said Sneha Dave, executive director of Health Advocacy Summit.

The Health Advocacy Summit was selected by RHIhub because of its innovate services and impact on rural communities. To read the full project summary, visit https://www.ruralhealthinfo.org/project-examples.

RHIhub is a national online information center on rural health issues, funded by the Federal Office of Rural Health Policy. Their website includes over 12,000 resources specific to rural health. Rural Health Models & Innovations features hundreds of successful programs that are serving rural residents across the nation.


Video for World IBD Day!

This video was created by the fellows of the Crohn’s and Colitis Young Adults Network (CCYAN) in honor of World IBD Day! The CCYAN is an international fellowship program, through the Health Advocacy Summit, for young adults with inflammatory bowel diseases. You can learn more about this program here.

Don’t Forget Us! Young Adults with Invisible Illness – Experts by Experience

By Sneha Dave

My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life. I was 13. I thought to myself that for the first time in years, I could go back to school full-time. I could go on a walk in my neighborhood—I would be “normal.” What I didn’t expect was the numerous challenges in reentering society. 

22780704_1162220723879857_2220534096001218708_n.jpg

I was diagnosed with ulcerative colitis at age six. Ulcerative colitis is a chronic inflammatory bowel disease that is said to affect primarily the large intestine, but in truth, it affects the entire body—the joints, the mouth, other organs. In young adults, it can create emotional, professional, and social barriers. There is limited research about this, but it is not a debated fact among young patients with ulcerative colitis and other invisible chronic diseases. 

Realizing the barriers that young adults with chronic illness face, I created the Health Advocacy Summit, (HAS) an advocacy event for young adults with chronic diseases. With Summits in nearly four states, this organization has become more than a support system or a fundraising organization—it is a direct tool for empowerment. HAS is not only connecting young adults with similar conditions to each other but also hosts sessions that address different aspects and needs of a chronic disease. 

There is a definite need for more resources to support the community of younger patients who face chronic illness. Further, there needs to be a fundamental change in the way young adult patients are treated by the medical model. When I was diagnosed, my care was rudimentary. I would only see my pediatric gastroenterologist and the occasional specialist for other related symptoms. There was no holistic care, no addressing the psychosocial aspects of chronic disease, especially at a developmental adolescent phase. 

Some medical facilities do have a psychologist integrated within the specialties, such as gastroenterology, which is of incredible value in early intervention therapy. I am hopeful that other hospital systems will become focused on treating the patient as a whole, by including specialists such as psychologists within their practice. 

Nearly 15 years after my diagnosis, I live with a J-pouch, which is my small intestine functioning as my large intestine. I’m not yet what one would classify as healthy, and I’m still seeking effective treatment while hoping for more research. But I feel incredible! I know that there is a wide community of other young adults with invisible illnesses, and given an empowered voice and more recognition, this community can transform the healthcare system to be even more patient-centered—and more effective in not treating the patient as a number, but as a person.

An awesome video about our founder!

Sneha Dave talks about growing up with a chronic disease, the isolation she has experienced as a result of her illness, and what she is doing to create a brighter future for others living with chronic conditions.

Coping With the Regret That Surrounds a Chronic Illness

By Sneha Dave

Regret: the fine line between an emotional breakdown and the feeling of hopelessness. Those of you with or even without a chronic illness know exactly what it feels like to regret.

I am a freshman at Indiana University and was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease, when I was 6. Truthfully, I have missed out on a normal life, but I have been equally fortunate with so many opportunities to travel and expand advocacy efforts for individuals suffering from inflammatory bowel diseases and other chronic conditions.

When I find myself regretting my medical decisions, I end up in an indestructible bubble of negative thoughts. Regret that surrounds a chronic illness can truly be the one emotional strain on top of insurmountable physical obstacles. We often regret our medical decisions; for example, whether we should have agreed to that irreversible surgery or not. I thought hard about my surgery, but it's been difficult – even now – and here's why.

I was a freshman in high school when my family and I decided it was finally time for the last resort we had: to have my entire large intestine removed (a colectomy surgery). It was an incredibly difficult decision, because the large intestine is irreplaceable. While many medical doctors have classified the colectomy surgery as a cure, I can testify that it is absolutely not. I live with inflammation and still undergo procedures, frequent doses of antibiotic treatment and an incredible amount of fatigue. Not having a colon affects my daily tasks, and as a first-year college student, it can be frustrating even as I consistently put a positive spin on each situation.

Here's what to recognize when dealing with regret, especially relating to your chronic illness:

1. You just cannot control some circumstances.

The decisions I made on my own often loomed over me as I regretted not trying hard enough. One instance, in particular, was when I had a suppressed appetite due to active inflammation and medications. I was put on a peripherally inserted central catheter, or PICC line, for nutrition, and I often blamed myself for not trying hard enough to eat. While I knew it wasn't my fault, every time I went in public with my PICC line, I would regret my "decision" to not eat. It was emotionally stressful for me when I had to explain my PICC line. I often felt that what was happening to me was because I did not try hard enough or hadn't kept ahead of my medical responsibilities.

2. Don't stand in the sticky sand of despair.

During my nearly 13 years of living with ulcerative colitis, I've been prescribed lots of medications – many that cause symptoms almost worse than the disease itself. There was a 6-month period where I refused to take my lowered dose of six large capsules a day (down from an original eight capsules) because I felt so good and normal without them. That period where I did not take medications could have led to what came ahead: a life with severe inflammation. It used to really bother me that I didn't take my medicine for that long. Without being self-deprecating, I quickly learned that it was unnecessary for me to think about one topic instead of focusing on the positive and trying to fix my situation at hand.

3. Rest, and don't regret it.

Still to this day, every time I miss a class in college, I feel incredibly awful. Earlier this year, I was paralyzed with pain in my abdomen. I had to skip class and was upset because I didn't know how to explain it to my professor or if he or she would be understanding. Not to mention: How do I explain to the person sitting next to me, who I will seek help from for notes, that I was sick when I clearly was not visibly sick? As a chronic illness advocate, I sincerely believe in educating people about your chronic illness, but it is difficult to do so for the smallest reasons such as asking for notes. The same way I felt bad about missing a class, many chronic illness sufferers feel guilty about missing an event and stress about how to tell someone they were sick. Never feel guilty about resting, because it is likely what you need most.

4. Let yourself relax and experience joy.

My mom, dad and I took a trip to hike this summer. While I was climbing up a very steep hill that my father pushed me to climb, I realized how far I had come. It was incredible. I, the same person who a couple years ago had difficulty putting one foot in front of the other without feeling dizzy, could climb a difficult hill and feel great while doing so. It is absolutely necessary for you to get away from your comfort zone and experience nature or whatever may relax you. Abandoning yourself in something that you really love and enjoy can be more healing than anything else. Living with a chronic illness is not easy, and you certainly deserve it.

I can't recall what it felt like to not have ulcerative colitis and its consequences, and I'm OK with that. In the most positive context, I'm OK with having missed class field trips and birthday parties. I'm OK with the physical pain that I have faced and will face. But most of all, I should feel OK with the medical decisions I have made, and not let regret steal joy – or let it do the same to yours.