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My name is Emily Pierri. I am 17 years old, and I have been chronically ill for 8 years. My diagnoses are Type One Diabetes, Endometriosis, ARD (Adhesion Related Disorder), POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis and MCAS (Mast Cell Activation Syndrome).

One of the hardest things about living with multiple chronic illnesses is the constant internal battle to stay strong despite all of your suffering. I like to always reflect on the ways my illnesses have made me stronger a person despite all the challenges I have faced.

Read her blog below:

1. I HAVE BECOME AN ADVOCATE, NOT JUST FOR MYSELF, BUT ALSO FOR OTHER CHRONIC ILLNESS FIGHTERS

It’s important to be my own advocate when it comes to fighting multiple illnesses because these illnesses are “invisible.” Over the years, I have learned how to properly advocate for myself in front of doctors and stand up for the treatment I deserve. Through this journey, I have also developed a passion for advocating for other chronic illness sufferers out there, because no one deserves to feel alone.

2. SUFFERING HAS MADE ME APPRECIATE ALL OF THE LITTLE THINGS IN LIFE

My illnesses have made me appreciate little things as simple as going out to the grocery store or the mall on a good day. When you are sick and in pain, it’s not easy to get out of the house often, so when you do, it makes you appreciate it that much more!

3. GAINING KNOWLEDGE OF MY ILLNESSES

Over the past couple years, I have been to so many doctors and have gathered tremendous information about my illnesses. I have also joined online support groups to see what other patients in my situation are doing and to see if there are any options out there that I haven’t heard about yet. My growing knowledge on my illnesses has helped me immensely and has given me new treatment opportunities I would never have known existed if I weren’t fighting to find more information. Knowledge is key to finding the best treatment options for you! I have learned to be more open about sharing my journey with the world.

4. I’VE LEARNED TO BE MORE OPEN ABOUT REVEALING MY JOURNEY TO THE WORLD

When I first got really sick, I never talked about it, nor shared it on my social media. As I got worse, I began to realize how important it is to spread awareness and share my journey with others, so I started an Instagram account (@chronically_emily), which now has over 5k+ followers. On my profile, I share the good, the bad, and the ugly of my life with chronic illnesses.

From my perspective, I want to help as many people as possible. It has also been therapeutic for me, as I’ve also been able to meet some pretty wonderful people, who are illness fighters, just like me. I also have a YouTube channel where I share my day-to-day life in vlogs, which consists of sit-down videos talking about my different illnesses (educating people on what they are and spreading awareness).

5. AMBITION LEADS TO SUCCESS!

Back in October 2016, I had a procedure, which landed me in the ER the following night due to complications. That next day I was scheduled to take my driving test, so I spent the night in the ER from 2-6am, got home, went to practice parallel parking one last time, and drove to take my test…and I PASSED! It took all of my strength to do this, but I had wanted my driver’s license for so long and worked way too hard to give up this opportunity.

I think it is so very important, especially when you are chronically ill, to have goals and ambitions in life despite all of the challenges you face with your health.

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The post My Illness Has Made Me Stronger appeared first on Mighty Well Journal.

Having two very short parents my short stature wasn’t exactly a surprise. I was born at 17” long (a size now mandated by law to require additional testing) and grew up just tall enough to fly under the radar. It wasn’t until I was about six years old when my parents noticed that while my peers were growing leaps and bounds (growth spurts are very common at this age) I didn’t seem to be growing at all.

In 2004 I was diagnosed with Turner syndrome accompanied by hypothyroidism, and immediately began treatment for both in the form of thyroid medication and nightly growth hormone injections.

My family was terrified because more than being just short there were many complications I could be facing, including diabetes, ovarian failure, and most seriously heart abnormalities. I spent a week that fall at the National Institute of Health in Maryland undergoing every medical test imaginable, the most important of which being an intensive MRI of my heart lasting over an hour that showed that I, very thankfully, had a normal, healthy heart.

This being said, my experiences with this very visible condition have not been easy. At 4’9” I can expect to have a children’s menu offered to me upon entering a restaurant. I’ve struggled for many years with body image issues, and along with the high risk of ovarian failure, I’ve had to plan around whether or not I see my future including biological children— a decision I still find myself unprepared to make.

Tribulations aside, I am incredibly aware of just how fortunate I am. Since my diagnosis I have had the opportunity to meet many other girls with Turner syndrome, who have spent most of their childhood having surgeries, struggling academically and socially, on top of having many learning and social disorders, which are also common with the disorder. I see it as such a blessing that this has not been my experience. My parents’ careers provided our family with insurance that covered injections that cost more than my college education, I have been under the medical care of an endocrinologist who is knowledgeable, proactive, and understanding, and I have the strongest support system I could ask for.

It’s important to note, however, that while I find myself surrounded with support and positivity, the most important part of coping with my condition is the work I’ve had to do myself. The most successful way that I have coped with these things is by looking at the bright side. I found ways to make peace with my body through dance, a hobby that has given me both confidence and tremendous joy (not to mention how much fun it is to be the one who’s always lifted), and I know that I’ll probably be carded until I’m thirty.

My disorder has taught me not to take anything for granted, to be strong, and most importantly, that even though I won’t get any taller, I still have lots of room to grow.

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The post Living With Turner Syndrome appeared first on Mighty Well Journal.