As President of Soroptimist International of Simi Valley, I am proud to share the incredible story of SarahRose Jarvis, a courageous young woman whose journey embodies the spirit of resilience, determination, and hope. SarahRose, a recipient of our club’s support, has graciously shared her experiences with us, shedding light on the challenges faced by those living with chronic illnesses and disabilities. Her story is a testament to the power of community, advocacy, and the difference that compassion and generosity can make in someone’s life. We are honored to be a part of Soroptimist making a difference and to have been a part of her journey. We are inspired by her strength and passion for empowering others. Below is her speech, given to our attendees at the August 2024 Program Luncheon.
- Brooke Grayson
SarahRose Jarvis Speech – August 15, 2024
Hello! Thank you for having me at this meeting today; I am truly honored to be here. I’m very excited for this opportunity to share my story and my journey with you all and I appreciate that you have created a safe space for me to do so.
In that spirit, I want to be open and honest with you, and that includes being honest about the challenges that I am facing simply by being here to talk to you today. Because of my complex set of medical conditions, just being here right now, sitting upright with the bright lights around me, my body is struggling to maintain my heart rate and blood flow. This can create something called brain fog. We’ve all experienced brain fog at some point – it makes your thinking cloudy, it makes you forget things that you should be able to remember, and it can even make finding words difficult. This can be especially challenging for someone like myself who has been a public speaker their whole life. I used to be able to perform an entire show or a 10 minute speech for the speech and debate team without any notecards or worry of forgetting my lines. Standing here today, or sitting as it were, I know that there is a high likelihood that at some point I will forget what I am trying to say or lose a word that I want to use. I appreciate your patience as sometimes I may need to take a few deep breaths and pause in order to move through these challenging moments.
When talking about my journey, it’s difficult for me to know where to even start. People often ask me, “What happened to you?” What they expect in response to this often intrusive feeling question is something simple like “I fell” or “I was in a car accident”. However, for me, and for many other disabled and chronically ill individuals, the answer is far more complicated, lengthy, and difficult to understand. In all honesty, I would love to answer the question of what happened to me with, “I was born”, because not only is it true, (spoiler alert, I was born with a genetic disease) but I have been dealing with medical issues for my entire life. Throughout my childhood and teenage years, I dealt with many unexplained medical issues and injuries. From having asthma and random allergic reactions to plantar fasciitis and chronic pain in several different joints, there was always something that didn’t seem quite right with my body. Doctors however, viewed all of my physical issues as isolated, solely from the lens of their specialty and not connected to any larger over-arching issue. They either said I was too young to have certain conditions, or, the most common response, “it’s just anxiety”.
So I pushed through the physical pain that I had and moved through life as best I could. I did dance from the time I was three years old, started theatre in middle school, and began teaching theatre and dance to children in our community through Simi Arts Conservatory before I even graduated high school. I attended Moorpark College and then California Lutheran University, where I was president of the psychology honor society my senior year and graduated with a degree in psychology as a valedictorian. But throughout all of these achievements, I still struggled with ever-worsening pain and other health issues, and I knew something bigger was wrong with my body.
It wasn’t until after I graduated college and turned 25 that I finally made it a priority to figure out what was going on. I realized that if this was how much pain I was in at 25, then quite frankly I was terrified of what my life would look like by the time I was 50. So I made it my mission to figure out how all of my issues were connected, because, despite being brushed off by many doctors and told it was all just anxiety, I truly believed that all of my health issues must be connected somehow.
My medical journey was delayed by the pandemic, but in late 2020/early 2021, I sat down with my new primary care doctor and a typed-out list of all the symptoms that I believed were connected. Finally, someone actually listened to me and took me seriously, and this was the first time I heard the words Ehlers Danlos Syndrome. Ehlers Danlos Syndrome (EDS), or more specifically one of the 14 subtypes of EDS known as Hypermobile Ehlers Danlos Syndrome (hEDS), is a genetic connective tissues disorder which causes one’s connective tissues, such as ligaments and tendons, to be overly stretchy and weak, along with a whole host of accompanying symptoms. Because connective tissues are what hold our bones together, hEDS impacts nearly every part of the body, especially one’s joints, which are hyper-flexible and prone to injury. Learning about EDS put so many pieces of the puzzle of my life together, which made many of my experiences make much more sense. All of my issues were connected – my joint issues, my heart palpitations, my random injuries, etc. – just as I had thought!
But wait, there’s more! For many people there are other chronic illnesses and disorders that commonly go along with EDS, like some sort of horrible “packaged deal” as my rheumatologist called it. I have what is commonly referred to as “ the trifecta”, three disorders that commonly occur together – EDS, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of autonomic nervous system dysfunction where the automatic processes of your body that occur outside your conscious control, such as heart rate, blood pressure, and digestion, are not regulated as they should be. For example, when I go from sitting to standing up or from laying down to sitting up, my heart rate skyrockets and my blood pressure can drop, making me feel lightheaded or like I can going to pass out. Mast Cell Activation Syndrome (MCAS) causes me to have frequent symptoms of allergic reactions, from rashes and hives to gastrointestinal problems, even to things I am not actually allergic to.
I will spare you all the details of these disorders, and all of the other diagnoses that I have since received, but between them all, they impact every system in my body. Because of this, every day feels like a different challenge pops up and a new fire needs to be put out, from extreme dizziness and fatigue to joint injuries and chronic pain. Most days I am unable to do basic tasks like bending over to pick things up, showering or washing my hair by myself, or walking very far without my walker or a wheelchair, let alone being able to work. This means that I am currently very dependent on my family to help me with my ever-changing needs, which can be taxing on us all. Many times I feel like, despite the fact that I will be turning 30 next month, I am very much a child again as I am dependent on others for everything from making meals to driving to all of my doctor appointments.
At this point in my journey, I am very thankful to have a pretty good team of doctors and physical therapists to help me improve and manage my symptoms, but it took a long time, many bad experiences, and a whole lot of determination to get here. Looking back, it turns out that I was misdiagnosed for more than 12 years after my first major symptoms started appearing.
Unfortunately, delay in diagnosis and misdiagnosis are incredibly common for people with EDS. In medical school, many new doctors are taught the saying, “When you hear hoof beats think horses not zebras.” This is taught to mean that when you are presented with a symptom, think of the most likely or common diagnosis, not the more unlikely or rare one. For example, when someone comes in with a cough, think of the more likely diagnoses of a cold or asthma instead of jumping to a rare disease or cancer. While this can be helpful in guiding thinking, it can also lead to the misdiagnosis of individuals who actually do have more unlikely or rare diagnoses. Sometimes the answer really is the more rare option; sometimes it is a zebra and not a horse. That is why the awareness ribbon color for EDS is zebra stripes!
While it is amazing that I eventually got diagnosed as it has allowed me to get treatment, unfortunately, by the time I was diagnosed, my symptoms had progressed and gotten much worse. That is actually one of the main reasons that I am here today, sharing my story with all of you – because if by raising awareness and educating others about EDS, I can help another person not have to wait so long to get a diagnosis, then it will be worth it for me.
Which leads me to the goals that I want to share with you. The journey of chronic illness and disability comes with a process of grieving the life you thought you would have and figuring out what your life might look like now that you are disabled and/or chronically ill. I am still very much in that continuous grief process and I certainly don’t have my future all figured out, but I do have a few ideas of things that I feel really passionate about based on my own experiences.
As you may have guessed, the biggest passion and goal that I now have is to raise awareness for EDS and advocate for other people living with chronic illnesses and disabilities. I especially want to help empower other young women who are going through medical journeys similar to what I have experienced and are facing disbelief, misdiagnosis, and even gaslighting by doctors. I say women specifically because, not only do I want to support my fellow women, but statistically women have these disorders significantly more frequently than men, and yet often face a significantly more difficult time getting diagnosed. For example, research indicates that women are more likely than men to have POTS at a rate of 5:1; for every one man that has POTS, there are five women who have it. The same pattern holds true for EDS. A 2019 study found that 70% of the individuals who had EDS were female, while just 30% were male. This study also found that women with EDS were generally diagnosed almost nine years later than men. Because of this, I share a similar goal with Soroptimist of empowering women as I want to empower young women on their medical journeys, navigating through the complexities and hardships of the medical world, so that they can get the diagnoses and treatment that they need and deserve.
I am also interested in using my psychology degree to help other people with chronic illnesses and/or disabilities, either in research or clinical practice. Sadly, there is a lack of both research on the effects of these types chronic illness on mental health and well-being, and very few clinicians who have knowledge or experience in working with people with disabilities and chronic illnesses. Based on my own experience of the difficulties in finding mental health support for the toll that dealing with all of this takes, I know how critically important it is that people like me have more resources and knowledgeable clinicians to support us. Of course, pursuing a career in either psychological research or as a clinician would require me to go back to school, which largely depends on my health. Right now, my health is not in a place where that is possible, but until that time comes I can continue to be an advocate and educate people like I am right here today.
On a more personal note, my goal is to get back into performing in theatre and dance as I don’t want to lose that piece of myself. I am looking into the possibility of wheelchair dance as a way to be able to participate in that passion of mine again. I also want to make theatre more accessible for disabled actors as many performance spaces are not currently accessible to them. In fact, I am actually working on this goal right now! I have been a part of Troubadour Classic Theatre Company, made up of Santa Susana High School teachers, students, alumni, and community and professional actors, for more than 10 years. Unfortunately, our current performance space at Santa Susana High School has not previously been accessible for people, like myself, who use a mobility aid. However, we are about to start working on a production of Shakespeare’s A Midsummer Night’s Dream where I will be working with the technical theatre department at Santa Su to make the production fully accessible for me to use my wheelchair. I hope that this will pave the way for future students with disabilities to be able to perform on that stage. Beyond this, I dream of the possibility of some day having a fully accessible theatre company with disabled actors of all kinds. The reality is, the disability community is the only minority group that you can suddenly become a part of at any time in your life. And yet, there is still so much inaccessibility that we face every single day, including in the performing arts, and I want to be a part of changing that.
The goals that I just talked about are big picture goals, but most of the time my goals from day to day are simple – to get through my day without my body completely falling apart, to be more independent and do small tasks by myself, and to feel empowered to be able to experience life as fully as I can with my disability. There are two new tools in my life that are opening up more and more possibilities for me to make all of my goals a reality: my new service dog, Georgia, and the amazing power wheelchair that I was able to get because of you. Of course, Georgia is amazing and I’m happy to share anything you would like to know about her, but what I’d really like to talk to you about is my wheelchair and how it has completely transformed my life.
Let me give you a little snapshot of what my life looked like before I got this amazing power chair. If I was going to be going anywhere that required a lot of walking or my joints were flared up, I had two choices: (1) use my walker and deal with pain, dizziness, and lightheadedness and not be able to participate for very long or go very far, or (2) I had to use a transport wheelchair and have my mom or another family member push me around. Unfortunately, I am currently unable to use a manual wheelchair to push myself because of another condition that I have which affects my right arm, so I needed someone to push me when I used a wheelchair. Not only was this taxing on whoever was pushing me, but it left me with no control over what I could see or do. For example, my boyfriend would often be pushing me around while we were shopping and say, “Look at this, wouldn’t it be perfect?” And I would have to reply, “Honey, I have no idea what you’re talking about because I’m staring at a wall.” I would also have to tell my mom to reposition me every time I wanted to look at a different person to have a conversation with them. This was obviously complicated by my need to wear a neck brace, so I couldn’t move my head, and it was very frustrating for everyone involved. It left me feeling like I often couldn’t participate in or enjoy many of the things I wanted to do.
My neurologist recommended I get a power wheelchair, but insurance would only cover part of the cost if it was a standard, bulky, several-hundred-pound power chair. There were two major problems that made such a heavy, bulky chair not feasible for me. First of all, we don’t have an accessible van or a lift attachment for our car and it would cost at least several thousand dollars to get one, which we could not afford. Secondly, we live in a house with very narrow walkways and door openings. A large chair would simply not fit in our home. When we discovered this transport power wheelchair, the lightest weight one on the market at only 28 pounds and completely foldable for transport in the back of a car, we were ecstatic! We thought that it would be the perfect fit for both my mobility and size needs. However, as is all too common, insurance would not pay a single cent for it and we simply could not afford to pay for it out-of-pocket. That’s where your club stepped in and gave me one of the most amazing gifts I have received.
What you gave me is far greater than a wheelchair – it is my mobility, my independence, and a piece of my life back. I have truly been empowered in so many ways by this chair. First of all, I am no longer stuck looking at whatever the person pushing me has pointed me at, or having to ask if I want to look at something or someone. I can now choose on my own what I look at and where I go! It may seem like such a small thing, but being able to move on my own volition is so freeing and gives me such a sense of independence. My boyfriend, however, is sad to no longer have a captive audience for his jokes as I can now just zoom off in another direction! Additionally, this chair is so lightweight that any of my friends or family members can lift it if I want to travel with them, which means I don’t have to rely solely on my mom for transportation. In fact, a few weeks ago, my mom, who is my primary caregiver, was able to get away on a mini-vacation for a few days, in part, because one of my friends was able to transport me to physical therapy and we didn’t have to worry about how to get my wheelchair in their car.
Not only has this wheelchair given me increased independence, but it has opened up so many opportunities for me. I can now go to the grocery store without it taking up all of my energy for the day. I can go out with my friends, no matter how much walking will be involved. I can hold my boyfriend‘s hand while we are walking instead of him pushing me. I can take Georgia on walks around our neighborhood. I could even use this chair to allow me to go back to school one day. Even beyond all of that, it has allowed me to be able to enjoy the things that I am doing. Instead of being focused on being too dizzy or lightheaded to walk, or needing to take a break, or thinking about where I need to have my mom position me to talk to people, I can now focus more on what I am actually doing, allowing me to be present and actually enjoy these experiences.
I could go on and on with examples of how much of a difference this wheelchair has made in my life. I have even told many of my doctors about how life-changing it has been, because the reality is that this chair has been able to help improve my quality of life more than most of my doctors or medications could. For the freedom, joy, independence, opportunities, and empowerment that this chair has given me, I am immeasurably grateful. There truly are no words to adequately express my gratitude to each and every one of you for this incredible gift, so all I can and will continue to say is thank you, thank you, and thank you.
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