The Chronic Diaries: Stefanie’s and Melanie’s Journey with Chronic Conditions
Where are you based?
We are 25 (Stefanie) and 21 (Melanie) years old. We live in Texas and love everything about it!
What chronic condition(s) do you have? Please briefly describe what they are?
We both have a genetic connective tissue disorder called Cardiac-Valvular Ehlers-Danlos Syndrome (cvEDS), a disorder of the Autonomic Nervous System called Postural Orthostatic Tachycardia Syndrome (POTS), and an allergy system disorder called Mast Cell Activation Disorder (MCAD). In addition to this, Stefanie also has a digestive system disorder called Gastroparesis and an immune system disorder called Common Variable Immunodeficiency (CVID).
What symptoms did you deal with before you were diagnosed?
Postural Orthostatic Tachycardia Syndrome (POTS)
For both of us, our first undeniable symptoms of illness were lightheadedness, dizziness, nausea, brain fog, and syncope/fainting episodes caused by POTS. Interestingly, we both developed POTS after having really severe viruses at the ages of 18 (Stefanie) and 15 (Melanie). We both got sick with a virus and genuinely were never the same again.
Mast Cell Activation Disorder (MCAD)
Prior to our diagnosis of MCAD, we both dealt with repeated, unpredictable, severe allergic reactions to anything from the food we ate and the medications we took to the smell of scented products and exposure to water. MCAD was and still continues to be the most challenging diagnosis that we deal with on a daily basis.
Cardiac-Valvular Ehlers-Danlos Syndrome (EDS)
Looking back, it is clear that our first symptoms of EDS were issues with walking and delays in motor development in early childhood. However, the most evident symptoms of EDS we experienced before our diagnoses were joint hypermobility, easy bruising, and mild to moderate pain.
Gastroparesis
For Stefanie, she dealt with nausea, vomiting, feeling full after two bites of food, stomach bloating, and severe stomach pain prior to receiving her diagnosis of Gastroparesis.
Common Variable Immunodeficiency (CVID)
In addition to EDS, an undiagnosed immune system disorder has been present in our family for generations. Stefanie’s symptoms of the immune system disorder prior to diagnosis were developing repeated infections, becoming infected with unusual organisms, and requiring longer, stronger courses of treatment to clear an infection than a normal individual.
How were you diagnosed? What was your journey to diagnosis?
In 2013, Stefanie developed a severe respiratory virus. 24 hours after onset of symptoms, Stefanie passed out getting out of the shower. At the time, we didn’t know it, but she had triggered POTS. 12 months, 10 + hospitalizations, and countless doctors’ visits later, she received a diagnosis of POTS from a specialist in Texas. During her POTS evaluation, she was referred to be evaluated for Gastroparesis based on her symptoms and for EDS because of its close relationship to POTS. Within a couple of months of receiving her POTS diagnosis, Stefanie, also, received a diagnosis of EDS and Gastroparesis.
In 2015, Melanie developed a severe respiratory infection and double ear infection. A couple of weeks later, she became too lightheaded to stand up while we were cooking dinner one night. When her symptoms continued into the following days, we knew she had triggered POTS. Due to our familiarity with POTS as a family, Melanie received a diagnosis within days of triggering it. After receiving her POTS diagnosis, we knew that it was extremely likely that Melanie, also, had EDS. Less than 4 months after receiving her POTS diagnosis, Melanie was evaluated for and diagnosed with EDS by a Geneticist.
In 2016, Stefanie developed severe fluid retention to the point that she was having difficulty breathing. After spending 22 days in the ICU, Stefanie received a diagnosis of MCAD. At the time, Melanie was experiencing some of the same symptoms of MCAD. After being tested, Melanie, also received a diagnosis of MCAD.
In 2018, Stefanie was evaluated by an Immunologist after having struggled with infections for at least 5 years. After completing testing, Stefanie was given a diagnosis of CVID. While Melanie, also, deals with infection issues, she does not currently fit the criteria for CVID.
Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc.
To say that the course of our lives have been altered by our chronic illnesses would be an understatement. If we were not chronically ill, Stefanie would have graduated Medical School and would currently be in Residency. Melanie would be graduating this year with a Psychology Undergraduate degree and would be entering a Master’s/PHD program for Clinical Psychology. Instead, because our chronic illnesses have taken precedence in our lives over the past few years, we both have yet to finish our Undergraduate degrees.
Are you on any medications?
Yes, we are on quite a few medications targeted towards each of our chronic illnesses.
What side effects do you encounter, if any?
In general, we have been lucky enough to not really have to deal with many side effects from our medications. In the past, we have been on medications that made us extremely motion sick, susceptible to sun poisoning, and tachycardic.
What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?
We both deal with nausea, tachycardia, lightheadedness, anaphylaxis, joint dislocations/subluxations, brain fog, joint pain, fatigue, headaches, and many more symptoms despite being on medications for our conditions.
What occupation do you have? How does your illness effect your job/employment?
Melanie works from home in IT Support. Stefanie is a Pharmacy Technician at a nearby pharmacy. While all of our illnesses effect what types of jobs we can do, MCAD has definitely affected us the most significantly. Being anaphylactically allergic to scented products makes it extremely difficult to be in a workplace because scented products are a normal part of life for most people. We have had to make difficult decisions regarding employment because we have to be able to afford the medications/treatments that we need.
How does your illness impact you mentally?
Our illnesses have definitely changed who we are as people. While we have bad days, where even getting out a bed is hard, we have tried our best from the beginning to stay positive and appreciate the little things in life. Being chronically ill gives you a perspective on life that is one of a kind. You never realize what you have until you lose it.
How do you keep motivated dealing with your chronic condition in your daily life?
For us, routine has been key to staying motivated to do our treatments and take our medications on a consistent basis. Also, setting realistic expectations and allowing ourselves to not be perfect 100% of the time has been extremely helpful for our mindset. It is easy to forget that you are human and that you are not perfect.
Is there any advice you would like to give to people who are on their chronic illness journey?
It’s so easy to view developing a chronic illness as the end of your world. We’re not going to lie. It’s not going to be easy all the time, but you will find a new normal. You will adapt and you will be ok.
How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?
Unfortunately, most people outside of the chronic illness community don’t understand what its like to live with our conditions. For the most part, their ignorance doesn’t really negatively affect us because we understand that they haven’t experienced what it is like to be chronically ill. We hope that through awareness, we can educate people outside of the chronic illness community and reduce the understanding gap between those with chronic illnesses and those without.
Is there anything you want to say to these people? Or the general public who do not have a chronic illness?
Please understand that having a chronic illness means that our lives are not always predictable. If we have to cancel plans, please know that our decision to cancel was extremely difficult and that we had to ultimately make the best decision for our bodies at the time. Our decision to cancel one day does not mean that we do not want to/are not able to get together on another day. Please continue to ask us to get together! Despite our conditions, we are normal, young adults with the same wants as anyone our ages.
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