For the majority of my life, I never told anyone I had a genetic life-threatening illness. As a child, everyone knew but through my teens and beyond I stopped talking about it. I was living double lives - most literally at some points in my life - I was someone at home and someone entirely different when I was out. For years my co-workers and best friends didn't know there was anything wrong with me. I would go into the hospital and tell everyone I worked with I was going on vacation.. everyone except the bosses, whom I asked to keep my secret.
People may ask why I decided to keep my struggles to myself, they may wonder how I could face it on my own, how I could be these two different people.. but to me, it was necessary. To be who I wanted to be I couldn't have people treating me differently because of my disease. I had seen it happen time and time again, people found out about my disease and their eyes shifted, their pupils changed, their energy felt different. They felt bad for me, they worried about me, they asked me how I was feeling, and if I was ok to do things with them. I hated feeling their pain, knowing I was the one causing it. I hated seeing the poorly covered emotions, the smiles that never quite touched their eyes. I enjoyed people to be happy around me, I liked making them laugh and smile, surely no one could forget that I was the "sick girl" and just be my friend. I didn't trust anyone with my secret, but I was convinced I was doing it for them. I didn't realize how lonely it was to have secrets. I didn't realize how withholding words could negatively affect me. Not to mention those close friends who found out I was hiding part of myself from them. They felt betrayed by me, which was the last thing I wanted.
I was terrified if I discussed my illness people would not only look at me differently, but they would see someone who is begging for attention. Someone who wanted sympathy and pity. I had no basis for most of my fears, but fears have a funny way of sneaking up and taking hold without us completely understanding why they are even there in the first place. I liked attention for being pretty, and funny, and smart. I did not like attention for being sick.
A few years back my farce came to a screeching fault when I got sick enough that family traveled from all over the country to watch me die. A story for another time perhaps, but the doctor who was treating me was convinced I wouldn't make it through the night and told me I should call and say my goodbyes. I hated that doctor, for so many reasons - some rational and some not so much, but mostly for giving me a death sentence I was not ready for. Almost dying on your family tends to cause a sort of uproarious amount of emotion. How do people share their emotions these days? You guessed it, the internet. I was tagged in posts from people I hadn't seen or talked to since high school, everyone was praying for me, and wishing me the best. Their thoughts were with my family, their words were about how strong I was, how courageously I fought... but there was some confusion as well. From those who didn't know I was battling a disease that stole my breath all day every day, battling a disease that was the cause of all those comments about needing to eat a cheeseburger, a disease that caused those sniffles and coughs I quietly played off as allergies.
My secret was out and I had no choice but to embrace this new person I was in everyone's eyes. I had to become the strong one again, just as I was as a child. I had to smile and say I was feeling well to everyone who asked. I had to thank them for their prayers and tell them I appreciated them. The truth was I was bitter and angry. Those were just two of about a million emotions I had at that time... but I struggled with being viewed in this new way. I felt like an imposter, pretending to be this glorified version of myself, wondering how I had tricked so many people into thinking I was strong and brave. The truth was, I was neither. I was terrified and so cowardly I couldn't admit it. All of these things tumbling through my head of my childhood, of times I had pretended to be brave then too. Of a time I couldn't tell my mom I was scared, because if I was scared, she was scared. She put on a brave face and held me and told me it was ok, but I could hear the doubt in her voice, see the fear in her eyes. She was a mother for the ages, one to go down in the history books - but she didn't fool me, no one did. I knew speaking my fears aloud made them real for the adults around me. So I held them in. I dammed them off and built a brick wall around them. I shoved them to the deepest depths of my mind where I wouldn't even let them make the tiniest of noise. I wasn't strong, I was a coward who hid my fear behind a face too proud to give away what was really going on inside my head.
I had hidden part of myself from everyone so I didn't have to hate the face I saw in the mirror. So I didn't have to see a liar every time I looked at myself. So I didn't have to be a person I hated anymore. I suppose I was lying by omission, but I didn't have to pretend to be someone I wasn't, I really was the other girl.. she was just freer without worry of making someone else worry. It was a freeing and brief moment of bliss in my life, and it was time to go back to she who brings the sadness... I think that was my biggest thing, I hated seeing other people sad. I hated making other people sad. But you cannot tell someone you have a genetic, terminal illness without some sort of emotion involved. For an even briefer period in my life I actually thought if I was bitchy enough that no one liked me, it would hurt less when I was gone. Oh, to be young and dumb.
Something changed in me in those weeks after I was hospitalized but did not die. I did a lot of self-reflection and tried to understand just what it was that made everyone so afraid of death. I came to the conclusion it was the finality of it. So, I decided to be someone who understood myself so well, that I was happy with the time spent here. I decided to become the person who others wanted to be around. I decided to be someone who loved life so much and was so unafraid of death that it was no longer scary to be my friend. I can't say I will ever truly succeed in that, but I won't ever stop trying either.
I suppose I'm lucky that I have - what we call - an invisible illness. It gave me the freedom to be someone else for part of my life when I really needed to know how it felt to be treated normally. It felt great, but I suppose being honest and open about who I am feels even better. I'm currently in the hospital and took the picture above since I've been here. An invisible illness is just what it sounds like; it's feeling like crap while looking relatively "normal". It's an illness that doesn't present itself with any signs on the outside - not really. There are two things in this picture that give away that I'm in the hospital, usually, the only two tells I'm in here. (No, I'm not giving the peace sign. Although, I do love to throw a good peace sign now and again.) That is not a necklace hanging from my shirt as it may appear with a quick glance, nor a bracelet on my wrist. There is an IV in my chest, attached to a port under my skin that goes into the jugular vein in my neck... (If you look closely you can see the tube under my skin in my neck), the part hanging out of my shirt is where I get my IV meds. On my wrist is my ID band, so I can be scanned like your items at the grocery store.. just in case someone tries to give me the wrong med, the computer will yell at them and tell them not to. Computers, eh? Filling the gap between human errors to save everyone's asses. Again, a theory for another time.
I get very sick, I get relatively healthy, I always feel awful, but I generally don't look as awful as I feel. Or more likely, I try to cover up how awful I look with some heavy makeup. An invisible illness may not make itself known to you, but it doesn't make it any less real for those living with them.. (unless they're truly a hypochondriac and they really aren't sick at all and it's all in their head). I'm in the hospital and there are only two ways you can tell I'm even sick. Life doesn't always present itself the way we think it should. I'm proud of the changes I've made as someone with an invisible illness. I try not to wave my illness like a banner, but I do try to wear it as a proud sigil. (I read a lot of fantasy novels, bare with me through the odd analogies.. ) I'm proud of leaving the cocoon of my comfort zone - even if I was ripped out of it without any choice. I had built this cocoon for myself and after all these years I think it has turned me into a butterfly. It certainly has changed how I think and feel. Now I'm navigating life as this new person. A person I'm finally happy being.