How My Sister’s Invisible Illness Turned Into My Personal Mission To Make the Invisible Seen

My sister Stephanie and I were born 5 years apart. I was born with Hemiplegia Spastic Cerebral Palsy,  so our relationship as sisters has always been unique. Stephanie grew up as self-sufficient, and extremely stubborn. She always knew better than anyone one else. She had the makings of a great defense attorney.

But alas, her love for taking things apart and “inventions” won out. And she would eventually begin to grow her wings In the big apple. Steph and her future were all hers for the taking. I have had the awesome experience as her big sister watching Steph overcome, and deal with whatever was thrown her with very stubble and with a quiet confidence while remaining humble.

Even when she was diagnosed as a type1 diabetic at the age of 14, Steph handled it as if it was an ordinary day in her life. My sister is no stranger to health issues, and nothing ever seemed to phase my sister or keep her down for long. That all changed seven years ago. From the time Steph was eleven years old she had several different kinds of headaches and was always told a variety of things. But, when she was twenty-one, and in school, she noticed a drastic change in them. And once again she was told, “it’s just stress, your a student with a full plate. Take some Motrin.”

My sister never took that as an answer and followed her intuition. After taking upon herself my sister found a local neurologist who specialized in two medical conditions Cerebral Palsy and Cluster Headaches. Upon my sister’s description of the pain she was, and still is, experiencing she was diagnosed as not only as a chronic migraine suffer, but she was also diagnosed as a chronic cluster headache sufferer. If you do a simple YouTube or Google search you will find that this condition is not only life-changing for the person who has this disease, but it is not a common conversation in the medical field.  Very few in the medical profession have any prior knowledge of this disease. And those that have recognized it as a serious condition have dubbed it the world’s most painful condition.

Never bow down, instead go to toe with it, find, fight, and keep your power.

But unfortunately, like most invisible and chronic illnesses, it’s not taken seriously enough or even acknowledged something that exists at all. As Steph’s big sister I became increasingly frustrated by, not only the lack of help my sister desperately needs, but also at the lack of compassion and empathy. So, I took it upon myself to turn this mess into a message no one could simply just ignore or dismiss. And I took it upon myself to create a place where we could highlight, educate, acknowledge, and support those who are far too easily judged rather accepted. And on July 30, 2016, I created the blog, The Abler. And in November of 2016, I created the Facebook Group The Official Facebook Group For The Abler Blog.

In just a little over a year, The Abler has covered 13 topics, completed 9 interviews, and has a growing social media presence. With the Facebook group that has over 300 members, the abler can also be found on Instagram, Pinterest, Twitter, and Facebook” like” page. And it is soon to have its own monthly video series. If you asked me today what my sister’s chronic/invisible illness has taught me I’d say this, that no one should be thought of as less than or dismissed because you do not have evident proof that your illness exists. Everyone should use their voice to empower and lift one another. If education is power why don’t we as a society count on personal knowledge and experience into that equation? And that is one of my goals that I hope I can continue to strive for with The Abler, and it’s growing community.

To raise people’s awareness, to educate, and learn from one another. As well as provide a safe and non-judgemental place where people can find kindness, compassion, and caring. While also attempting to make a tremendous effort in erasing the stigma and misconceptions that come with far too many topics in today’s society. Because, my motto for not only The Abler, but life is, “the more you know; the more you grow.” And watching something beautiful grow from something as painful as watching someone you love more than life itself suffer so much Is not only sanity-saving but empowering.

And, that I believe, is how anyone can overcome whatever monster you face in life. Never bow down, instead go to toe with it, find, fight, and keep your power.

-Jessica Niziolek