Many of you know I get on my soapbox to highlight the struggles and needs of the overlooked thousands of teens and young adults who live with debilitating chronic illness. People – you and me – tend to get so busy we forget about them and their overworked and over stressed parents/caregivers.
Can you please take a moment today to send a quick encouraging message to one of your chronically ill friends or another group of people whose struggle is near and dear to my heart: one of your friends you know struggling with mental issues?
Next step: Brainstorm ways you can serve them (the patient and their family) in big and small ways. Something as simple as a pizza gift card can help take care of their dinner AND ease their financial stress when medical bills are never ending. Most importantly, it helps them to remember they are not forgotten…. that they matter.
Back to my soapbox: I love the dedication of the medical teams who REALLY understands invisible illnesses and works diligently to not only ease the symptoms, but search for a cure. This soapbox is NOT for those dedicated medical team members. However, I REALLY get on my soapbox when some in the medical community seem to feel better when modern science can not explain a physical chronic illness so they tell these kids it’s all “in their head”. I have heard this told to countless patients we met through Mik’s charity, Mik’s Hidden Hearts Alliance, all over the country.
(1). Majority of them did not start their illness journey depressed. Living years in pain and isolation CAN cause feelings of depression. However some doctors just want to focus on the depression, claiming the physical symptoms the patients are facing are due to their “sad” feelings, refer them to a psychiatrist without trying to cure the illness or do not believe the physical symptoms are caused by a chronic illness that in many cases, still in its infancy in research.
2. No matter what, mental disorders are REAL. Those who suffer from it are similar to our chronically ill teens in that both groups fight an invisible battle everyday. Just because you can’t see it does not mean it is not real.
3. Do I believe all our chronically ill teens should be diagnosed as depressed? No – because this may not be the case (everyone gets the blues now and then) and this is like a pat on the head non-serious answer that tends to trivialize their physical symptoms AND it lessens the importance of those suffering true long term depression battles.
Both chronically ill patients and those patients suffering from a mental illness needs our understanding, compassion and hope. Treat your immediate world a little nicer. Practice patience in our rush get out of my way society. Reach out to them on a regular basis to let them know they are not forgotten.
Because you will never know how far your one smile or your one kind word can make someone’s day a little better. Spreading kindness and understanding gives life to hope. Hope encourages all to keep on trying.
And please remember – there is NO shame in asking for help when you or a loved one realizes the “blues” is much bigger than a temporary down time. Get professional help. If we were more transparent with one another, we would realize many people we think have it “all together” are really struggling with their own invisible battle. Regardless what your personal battle looks like, we are all in this together. Love thy neighbor and let’s work on making our world a little more compassionate and understanding. End of Soap Box : )
Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens and young adults who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness. #dysautonomia #chronicillness #Hope4DysTeens #TheHidden Dysautonomia Teens
My senior year, and rocky high school journey, have both come to a close. It is completely surreal to me because even though these years have all been challenging and seemed to go by so slow – it went by in the blink of an eye.
You would think that I would be tremendously happy to have these past four years behind me, but in reality I’m filled with a bitter sweetness as I go over the memories, the trials, the triumphs, and answered prayers. And as I review these last few years, really starting at my “new life” that began on October 23, 2010 when I first collapsed and ultimately learned I had the life-changing often debilitating illness beast called Dysautonomia, I realized I learned 4 key lessons I would not have learned otherwise.
1. Would I change it if I could? If I was told that I could go back and change everything, especially becoming stricken with Dysautonomia, to live the life I had originally imagined – I would refuse the offer. Why? Because despite how difficult this path has been it has been so rewarding in return. The people I have met, especially my fellow hidden (chronically-ill) teens, I would not have met otherwise makes me not even contemplate for a moment to change the last 4 years. Sure, I could do without being a human pincushion and the myriad of very unpredictable painful symptoms of Dysautonomia, but I would never trade having these people come into my life period.
2. Discovering my purpose: Through difficult times, it is what led me to discover there are other hidden teens and young adults like me and this developed a desire to reach out to them. One inspiring idea led to another and the idea for Mik’s Hidden Hearts Alliance was born. It took a challenging course of four years for everything to fall in its place and for certain prayers to be answered – especially receiving the vital help from volunteers and donors to make MHHA possible. I haven’t always been the most patient in waiting for all my prayers to happen, but when they have, it proved to me that it’s true that God’s timing is perfect.
3. Pushing forward despite any obstacles life may throw my way: Though I have improved physically compared to where I once was, Dysautonomia still has its grip on me revealing to me that I still have much healing to do mentally and emotionally. I am still triumphant in spite of it, and I know that God will help me through my struggles and heal the emotional wounds I bear… and that He has many more great things planned for the future. Besides the occasional tug on my emotions, life is kind of quiet at the moment. Currently, I have been meeting with all of my great business and charity mentors to obtain guidance on how to further expand and improve MHHA, as well as getting ready for community college next month (My goal is to pursue a degree in business so I can better serve my charity.)
4. Despite Dysautonomia being unpredictable: Dream, set goals, but understand it is okay not to have “all the answers”: I have many goals for the next few years, but do not have everything exactly figured out yet….and for me that is okay. I am just going to wait and see what happens and where life will take me. In the mean time, I am going to take every little opportunity and adventure that is presented, find enjoyment in each day, run after my crazy ambitious goals, serve others, and break free of the tight hold that Dysautonomia has kept me in for so long.
With starting college, I am starting a whole new chapter in my life and this illness can no longer contain my spirit that is ready to soar. I am going to go out and LIVE.
Here is a sweet video my mom made in honor of my 18th birthday and graduation featuring many friends of mine I have met through Mik’s Hidden Hearts Alliance.
Below are some of my pictures throughout my High School journey. The photos by Jen Culotta are a series we did to do “nontraditional” senior photos. I wanted Senior Journey photos and just amazed at her beautiful work. Thank you for following my journey. To learn more about my charity, please visit www.mikshiddenhearts.org.
Tags: anti-prom, chronic illnesses, dysautonomia
We are so excited to announce we at Mik’s Hidden Hearts Alliance are partnering again with Maggiano’s Little Italy for the 2015 3rd Annual Anti-PROM for teens & young adults with Dysautonomia and other life-changing chronic illnesses!
Save the Date: Sunday, April 26, 2015
We will have MORE space (the entire 2nd floor including the ballroom) and MORE casino games!
Please message us here if you would like to be on our Anti-PROM notification list.
DID YOU ATTEND ANTI-PROM 2014?? From volunteers to guests, we would love to hear from YOU! Please fill out this quick survey on your thoughts of our event. We want to go bigger and better and would love your help! Click here for the survey.
Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness. #dysautonomia #chronicillness #Hope4DysTeens #TheHidden Dysautonomia Teens
We appreciate all of our angelic sponsors. With every big or small donation, we are able to help more Hidden Teens. Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia Research, Spero Rehab and J Knesek & Assoc.