THE HARDSHIPS OF KEEPING AN ILLNESS PRIVATE

Losing friends is never easy. It’s especially difficult when you lose friends to something you simply can’t control, which is death. No matter how much you want to see and talk to your deceased friend, you can’t, and it’s because life is just unfair.

I lost three amazing people in three different times in my life. Nonetheless, it was difficult to lose all of them. They were all very different people and I was friends with them for different reasons. All three were very different people, but they had one thing in common – they had their own battles that they chose to keep private. They were all just very private people as a whole.

My friend who passed away of a heart attack – not only did no one except her family know that she had a heart disease, but all her friends, including her best friend she’d known since 9th grade, only found out her real name at her funeral.

My friend who passed away of cancer – none of us knew what her real last name. Even when what seemed to be one of her close friends asked her, she wouldn’t answer. And not only did she keep her illness a secret from her friend, but from her family too. She only told her mother she was sick three weeks before she passed.

My friend who passed away of epilepsy and depression – she only told me she had epilepsy because I told her I had epilepsy. To the outside world, she was the life of the party; sometimes even too much of a life of the party. She’d post on her Facebook every single, multiple times a day. That’s something that only a person that’s too public about their life would that, right? Wrong – absolutely wrong.

It was heartbreaking to lose all three of these people, especially considering it was so sudden. For years, I thought they were so selfish for keeping their illnesses, and practically their whole lives as well, a secret and allowing me, and the rest of their respective friends and loved ones, to grieve that way. But then it hit me….

I almost never open up about my struggles with cerebral palsy to my friends. The only reason they know I have cerebral palsy is because I can’t really hide it as it’s a physical disability. And even so, my husband says I’m very good at hiding it. I’m not too sure how true this is, but I’ll take it. Although some people in my circle had said they only noticed I had a disability once I told them. And some others completely forget I have a disability in the first place because, in their words, I don’t make it define me.

When I was first diagnosed with epilepsy. I kept it to myself for about two years. Only my husband, my family and only a handful of my closest friends at the time knew. It’s truly an embarrassing feeling to even say the words ‘epilepsy’ and ‘seizures’ out loud when you’re first diagnosed. It’s even more embarrassing to have seizures in public and therefore have people find out that I have epilepsy. When I was first diagnosed, there was no real reason for me to say anything. Not that there would be anyways. However, at the time, it was only that one seizure that I had. I was putting that one seizure behind me and my life was back on track until my condition worsened a year and a half later. In just a blink of an eye, I went from being seizure-free to experiencing 50 seizures a day everyday.

I still wanted to keep my illness private, but it became harder to hide. I had no way of hiding my seizures. It’s not like I could stop seizures from happening. They come and go as the f*cking please. And it’s not like I could say me having seizures was nothing. Of course it was something. Once the seizures stopped, it became even MORE embarrassing. No mater who I was with when I had a seizure, the looks they gave me after were just astounding. No one had to say anything to let me know what they were thinking. Their looks said it all. They were all like, ‘Awww, poor Stacie,’ ‘What can Ido to help?’ ‘This is so weird!’ ‘Oh no!’ and so on and so forth. To sum it all up, those around me would either feel sorry for me, freak out, or be totally confused and helpless as to what they should be doing to help me. The more people saw me struggling, the more people wanted me to open up. All I wanted was to be left alone.

There was absolutely nothing anyone could do to help me. I could barely help myself. All I wanted to do was stay home and never go out in order not to ever see those looks. I became isolated and I’d never felt more alone in my life. I selfishly almost started feeling jealous of my deceased friends that they were able to hide their illnesses so well. But then, I remembered a friend of a friend who also passed away of cancer years prior. Unlike my own friends, he never hid from anyone that he had cancer. He also never allowed anyone to treat him any differently or to feel sorry for him.

He became my motto. It was too exhausting to keep my illness such a secrecy. I needed to continue living despite my illness, and keeping myself isolated just to hide my illness and avoid talking about it wasn’t healthy. I was not only still struggling with epilepsy, but I was also struggling with depression due to how I was handling my illness. It became my mission not to ever allow anyone to treat me like I needed saving. Of course, some didn’t like the new version of me, and therefore, they’re no longer in my life. It wasn’t my problem, though, but rather theirs. The moment I made that decision for myself was a new beginning for me, and now, years later, after doing a lot of work on myself, I’m the healthiest I’ve ever been – emotionally, mentally, and physically.

At the end of the day, still have cerebral palsy. I still have epilepsy. I still struggle with depression. Nothing and no once can ever change it or make it go away. But none of these things have to define me, nor the people around me have to define me by any of these three things. I live my life just like anyone else, and if I have a seizure in front of a friend, so be it. Life is too short to live it in hiding.