"Where there is creativity, there is hope." ~ Donna Karan

Friday, May 25, 2012

But, You're So Young!

"Growing up is never easy to do. Some days you feel happy and carefree, and others you feel sad. Some days you feel confident and self-assured, and other days you feel unsure. Life can seem upside down, because you're changing so quickly, but your life is made up of what you believe about yourself. Believe in your ability to succeed, and you will. Believe in your ability to meet every difficult challenge, and you will. Believe in your ability to give and receive love, and you will. Believe in yourself. You are a wonderful, unique person who is beginning to find out what the world is about and searching your place in it. Have patience with yourself and love yourself. Growing up isn't easy, but you'll make it." ~ Donna Levine

This weekend I'm celebrating my twenty fourth birthday. Well, whoop-de-doo-da-freakin-doo. I'm not the least bit excited about this occasion (grumpy even) for a couple of reasons. Reasons that only those who have lived through these feelings can completely understand. The mere thought of turning twenty four is terrifying. I don't want to turn another year older, it scares me. Inevitably, I'm growing up, but I feel I've been robbed of the chance to actually grow up.

When I was a teenager, I would fantasize about my life as an adult. I spent a great deal of time meticulously planning and painting a picture of how I wanted my life to pan out. I knew what I wanted, I knew what I had to do to get there and I would stop at nothing to achieve what I wanted. The world was mine, and I set dreams with high hopes. And then along came chronic illness, throwing a spanner in the works. At the age of eighteen, life as I knew it changed completely. My life turned upside down.

Since being diagnosed, my life has gone in a different direction than I had planned (of course) and I've had to give up on several goals, and I've watched dreams slip further and further away from my grasp. I've had to deal with the grief of losing the old me- the healthy me; and I've had to face the fact that my life will never be the same. I've had to grow up with illnesses that not even medical professionals understand. I've had to transition into adulthood with illnesses that severely interfere with my daily life and impact on every possible part of growing up imaginable.

Your twenties is a decade to immerse yourself in every single thing possible. I've wanted to travel, explore and experience different things, and so far I've only managed to immerse myself in the lives of characters in day time television. Had my life gone as I intended, at twenty four, I would have obtained my teaching degree, and would be settled well into my chosen career- teaching kindergarten kids. I'd be either married or at the very least be in a relationship. Instead, I've watched my friends build a name for themselves, travel to amazing destinations, go out with cute boys, get married, and do all those things that proper grown ups do, while I find myself stuck at home watching reruns of Grey's Anatomy. It saddens me to know that I'm missing out on what should be the best years of my life.

Suddenly, life seems to be passing me by and panic is setting in. Twenty four. No degree. Working a pathetic three hours a week and just trying to survive. Social life down the toilet. No career. No boyfriend. And no signs of these things changing anytime soon. Of course I have hope, but that doesn't mean I'm scared of suddenly being thirty with both siblings married or moved out of home. Hope isn't going to give me back what I've lost- time with family and friends, experiences and the list goes on. Six years that I can't get back. It's a lot to bear.

The transition into adulthood with chronic illness in toe has been tough. I hadn't even realised how so until I sat down to pen my thoughts. People don't even realise just how difficult it is. I know this from the comments I receive in response to hearing about my health. All too often I am told how I'm too young to be sick, as if it will bring me some sort of comfort. "Oh, but you're so young, this shouldn't be happening to you". State the obvious, why don't you. Chronic illness is no respecter of age. Chronic illness doesn't care if it's your birthday, it's not going to stop causing you grief because you are turning another year older. 

The most common comment  I cop? "You're so young, you've got the rest of your life ahead of you". This one really grates on my nerves. It's insulting. People don't mean it to be, and probably won't understand why that is, but it is. It disregards everything I've had to sacrifice, it minimises all the emotions and everything I have been through and am still going through.

Just lighetening things up a bit with some humour.

And then there's the statement "Just be thankful you're sick now". Really? REALLY! I know that it could be much, much worse than what it is. I know that. And I am thankful that I don't have much else to worry about like raising a family and financial security and all that, but there is no age that's a good time to be sick. Just as an elderly person is struggling with illness, I too am finding it frustrating. My struggles are just different because I am at a different stage in life. And to be completely honest, there are times when I wish I got sick later in life, because I would have at least been able to live a little. Being ill at any age is difficult. Different, but difficult.

Being a young person hindered by fluctuating fatigue and a shopping list of symptoms is hard when career paths establish identity. It's almost impossible to keep your self esteem intact when answering "So, what do you do?" honestly. It's frightening having to figure out who you are and where your place is in the world. The normal stress and pressure of early adulthood is daunting enough without having to deal with invisible illnesses and lack of understanding.

Receiving pressure from doctors who want me to return to either work or study when fatigue hinders my ability to take on too much, is darn difficult- it's frustrating that no matter how hard I try, I cannot get them to understand how this bone crushing fatigue feels, and how hard it is to fight through the brain fog. If I were a pensioner, they wouldn't be fussed in the slightest about what I was or wasn't doing.

Then there's the social stigma, the isolation and the loneliness.. Young people can't grasp the meaning of the term chronic illness. They cannot comprehend that a healthy looking supermodel can actually be sick. There's the lack of support and understanding, too. Young people are not equipped to deal with the fluctuating nature of a chronic illness.

Think it's easier to be sick when you're young? Think again, because it's certainly not. Yes, I have my whole life ahead of me, but I have a very different life to that of a healthy person. I have to find new dreams and I have to accept that no one can tell me when I'm going to get better and gain my life back. I have to come to terms with the fact that my life for now, has come to a grinding halt. I have to accept the uncertainty and the unpredictability. I have to accept that I'm growing up, fast, and that my best laid plans are still completely out of my control.

It's not easy.

Essay written by Emily Ruth © ChronicallyCreative.net, 2012.

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Lisa Myers said...

Such a moving, beautiful post, Emily, that really resonated with me! I got sick at age 28--not as young as you, but I've felt many of the same things. Thank you for writing your story!

Miss Chronically Creative said...

Thank you for your lovely comment Lisa. It means so much to know I'm not alone in this. I just checked out your site- such a great resource! I look forward to reading it and sharing it with others. x

Tag said...

Yeah. Exactly.

My friends are having babies. They're getting married. They meet and date people effortlessly and hang out with friends two, three times a week.

Being social once a month is huge for me and even though I hear about great events and clubs, I'm rarely well enough to go.

I'm trying so hard to put my career first because I feel like I need to have some value as a person before I try and meet people. Otherwise I feel like I have nothing to offer. I feel pathetic.

But on the other hand, I'm getting so old. What if I hit 30 and no one wants me? Or there is no one left? When do I decide 'okay, no partner is on the scene, it's time to have those kids before all your eggs are rotten'?

Its so scary being young and sick. You feel like the starting gun has gone off for a race and your shoelaces are tied together.

And every year gets scarier. Not only are my friends all getting married, but their parents are dying. What if I end up sick, single and completely alone? With no family? I only have my mother. Without a carer I'd probably die in a few years. An incident during the night when I can't reach the phone, being forced to drive with a migraine because there is no food, being unable to afford rent and medication.

I know we're supposed to look at the positive, but sometimes it seems like every day just gets worse and worse and there is no going back.

Wow. That was depressing.

Next week I'll be all POWER TO THE PEOPLE again, I'm sure. :P

Tamara Epps said...

I'm so glad you wrote about this Emily as it's exactly how I feel all the time. The worst thing to hear is 'but you're so young' - I don't understand how anyone could think that's a positive thing other than finding it really patronising (even when I know that's not their intent).

I am 24 now and feel the same as you - my friends are having babies and getting married. That's not the life I want but I feel that I didn't even have the chance to choose what I wanted to do with my life. I wanted a career and travel and now I don't know if I'll ever be well enough to live a remotely normal life.

All I can think is that it has to get better because there's no other options (I know that's not technically true but I have to tell myself that lie just to get through each day).

I hope this year brings you better fortunes and that on your 25th you won't be feeling quite so down. Hugs x

Anonymous said...

I love your blog, and it really encouraged me! I got sick at the age of 22. Well, thats when my injury happened that brought my "myo-fascial pain syndrome" to life. I worked with special needs kids and one of them attacked me- it's been almost 4 years and since it is a Workers Comp case, I can't receive any treatment. They tell me I'm making it all up.
I'm in the middle of an extreme flareup right now and have been to the ER twice in the last week, since I don't have a doctor- the ER is my only option.
I thank you for your advice. And any advice you have to get me out of this current flareup would be amazing.
My email is girlygirl3433@gmail.com

Is there anything they can give me in the ER to stop the spasms or swelling? My pain starts around my bra line and and then spreads to my head and down to my butt, and down both my arms.
Thank you again for all your help!

Anonymous said...

You have just summed up everything I felt when everyone was telling me it would be best for me to drop out of uni. Everyone except my consultant, who thankfully believed in me and supported my decision to stay. I'm so thankful to still be progressing towards a career, but I am living with the recognition that it could be taken away from me so darn quickly if I flare too long or at the wrong time. I'm 20. I was diagnosed with CFS ages 18. I was ill for my 18th birthday and I'm likely to be ill on my 21st. Every day is a struggle, I have to be helped by people at uni, no-one here knows the 'real me'. I can't get involved in stuff. Everyone keeps telling us all to 'make the most of our time at uni', I can barely drag myself through the compulsory sessions. It's difficult to be surrounded by healthy people who can't understand the realities of our life. Even lecturers etc don't know what it's like. It's hard. Indescribably hard. But it's nice to know that someone somewhere understands- so thank you! <3 x

Miss Chronically Creative said...

It makes me sad to hear that so many of you are struggling too.

@Tag- oh hun that's completely understandable that you feel that way. My heart goes out to you. I'm really proud of you for pursuing a writing career, and I know that you've had to sacrifice so much to do that. It sure is frustratingly hard. And it is scary. I stupidly thought each year would get easier, but it just gets more and more difficult. I'm finding it harder to cope now, than when I did when I was first diagnosed. I know it's easier said than done, but please try not to worry about being alone- I'll always try to be here for you, and as for living alone, if it comes to that, we'll figure something out. I could always move up your way if you haven't got anyone (I'm being totally serious). We'll be ok x

@Tamara- it is patronising isn't it! So glad someone gets that. Phew! It's not a freaking compliment!! I keep telling myself it will get better, when deep down I know, that probably won't be anytime soon. I hear you hunny, I hear you. x

Miss Chronically Creative said...

Anonymous- Thank you! You've encouraged me. Sorry to hear you are struggling. That's so tough. I don't know of anything that can help you sorry. The only advice I can give you is to not give up and keep at them. There is an amazing chronic illness community on Twitter. I highly recommend joining. There have been some really kind people who have sure helped me through flare-ups. And you are more than welcome to email me if you need to vent or need some encouragement. I do hope you find some relief soon x

Miss Chronically Creative said...

Anonymous- Yeah going to uni and dealing with all the stuff that comes with it while trying to cope with chronic illness is incredibly difficult. Just turning up for a lecture is enough, let alone taking any information in. I tried uni three times over a period of four years and had to quit because it was just too hard and it made my health really suffer. Now doctors want me to go back. They don't understand just how much work there is... I'm hardly coping working one shift a week, there's no way I can manage study and placement at the moment, no matter how positive I try to be about it. Because of work, I can't get involved in anything else I enjoy. I am right here with you. I admire your strength. x


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