Two Being Healthy: Shining a Light on Invisible Illnesses from a Young Age

With their own diagnostic journey, two Millennial bloggers share how to find the right group of doctors.

 

Hello, we’re Emily and Kate, two biological sisters behind the wellness blog “Two Being Healthy.” While to the outside world we appear to be healthy, active young adults, we both suffer from lupus, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), and mast cell activation disorder (MCAD). We started our blog because we want to shine a light on invisible chronic illnesses, showcase all that we have learned, and to document our everyday journey.

Living With Disease

We are now age 30 (Emily) and 28 (Kate), and over the years, living with our conditions has become second nature. Although we work hard at managing our symptoms and have adapted to our new “normal,” this wasn’t always the case. We went from being healthy teenagers who played sports after school to constantly feeling flu-like and being bed bound. Being unable to participate in activities, like dances and parties at that tender age where friends and social acceptance are so vital was devastating. We missed weeks of school at a time and had to make arrangements with our district for partial homeschooling and shorter days for when we could make it in. We took online classes and tried to craft a schedule that worked for our unpredictability. After almost an entire year of feeling unwell, these symptoms led us to our initial diagnosis of Lupus at the age of 17.

When we were first diagnosed, our worlds dramatically shifted. So began the incredibly slow and grueling process of finding the right assortment of treatments for each of us, which unfortunately involved a lot of trial and error. We’ve been outsourced from the Mayo Clinic in Rochester, MN, to Johns Hopkins in Baltimore, MD as well as numerous specialists in our home of San Diego, CA. We both have the same condition, but it has manifested in slightly different ways, and we have found that we respond to medications differently as well. We’ve had what feels like every test under the sun and learned more about pills than we ever cared to know.

As we found the right cocktail of medications, our Lupus symptoms lessened, only to have our autonomic systems go haywire. This led to a diagnosis of POTS, which then led us to our diagnosis of MCAD and EDS. Autonomic issues are tricky because they’re unpredictable and unique to each patient. Anything and everything might affect our dysautonomia, so we are constantly trying to strike the right balance to keep our symptoms at bay while still making sure our numbers (blood pressure, heart rate) are normal enough for us to function. Something as simple as walking too far or not drinking enough fluids can result in a flare up which means being unwell for hours or even days on end. At the same time, exercising just the right amount is crucial to managing POTS, so we are continuously trying to walk a very thin tightrope.

Without even knowing it, much of our life had been modified while living with our chronic illnesses. As a baby, one of us we had to wear a brace for a dislocated hip. As little kids, we were told not to run on the sand because we rolled our ankles far too easily and constantly wound up in casts. When our parents held our hands to cross the street, they had to be extra careful not to pull too hard because our elbows would pop out. We discovered we had to give up yoga because instead of feeling relaxed and stretched out, we left in more pain than when we entered. Now we know that this is all due to EDS, the answer to our constant pain, hyperflexibility, and why we are constantly readjusting our knees, shoulders, and hips so they stay in place. We have since started using techniques like kinesiology tape, acupuncture, and muscle strengthening exercises to decrease our pain and help keep our joints in place.

Two Being HealthyTwo Being Healthy, a blog from two sisters who suffer from numerous chronic pain conditions, share their experience and advice for continuing a healthy life. (Source: Author provided)

Finding the Right Doctors

Feeling sick with no end in sight is not easy for us, but the hardest part in our journey was the very beginning when we had no idea what was going on or why we felt like our bodies were deteriorating. Being lost without guidance in the medical world is terrifying. Once we found our current (and amazing!) rheumatologist, we felt like we were being taken care of on a whole new level, and even in the midst of the unknown, we experienced a huge sense of relief. He was also able to refer us to other specialists who could provide top care in their own areas, allowing us to fight from all angles.

When we were “healthy,” we had always assumed that if we were sick, a doctor could fix the problem easily, but we soon became disillusioned. Certain doctors couldn’t see the scope of what we felt, and if our symptoms did not match up to their preconceived ideas, we were told that we were wrong or lying. Obviously, we are not medical professionals, and we only know so much of the medicine that we take and the science that relates to it. What we do know better than anyone else, however, are our own bodies, and we now accept that when something is not right, we have to be our own advocates. Understandably, this process diminished our confidence in healthcare providers, until we found the few that we wholeheartedly trust today.

The most important thing we can advise someone who is unwell is to find an excellent doctor or team of doctors who take you seriously, gives you validation, truly listens, and puts their own ego aside. For example, our prior cardiologist would dismiss our complaints and not believe us when we said we were feeling worse. It’s a horrible and isolating feeling to not have validation on the very real experiences that you’re feeling. You should trust putting your care in your doctor’s hands and feel that they have your back. People with chronic illness have enough to worry about without losing confidence in the help of their medical team. Luckily, we have now found a cardiologist who specializes in POTS and his knowledge has helped us tremendously.

We would love to hear more doctors using phrases like, ”Let me check into that,” “Let me do some research,” or “Let me refer you to a specialist,” rather than glossing over symptoms that they are unfamiliar with. When your second home becomes a hospital, news is not always going to be good, but a doctor who makes you feel like they hear you and they’re with you on this journey can make a world of difference. No one should leave an office with tears of confusion and frustration (we’ve been there many times).

A Better Life With Support

Our medical team has encouraged us to be as proactive as possible with all aspects of our health. Chronic illness often leaves one feeling out of control, but taking charge of the things we do have control over helps keep us motivated and gives us a feeling of empowerment. Our doctors have become our support team. They encourage us, for example, to do Pilates to decrease muscle pains, meet with a nutritionist to make sure we are eating healthy, and have the proper support network to help us feel like normal young adults. They look at our health as a whole, rather than prescribing medication to mask our symptoms. This in turn gives us a better understanding of what is going on with our bodies and has led us to our passion of exploring and sharing how you can be healthy too!

Check out our blog at twobeinghealthy.com

Updated on: 11/19/18
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