Tag Archives: advice

I Am Broken: Life With Chronic Illness

I have Juvenile Idiopathic Arthritis.
I am severely anemic.

I am broken.

And yeah, maybe I shouldn’t think that way about myself but it has taken me 10 long years to be able to say those words aloud to myself and I have fought to proclaim those three words. I believe I have earned the right to speak about my pain. I wish I could be optimistic all the time and actually believe the things that I and others tell me when we say:

“It’ll get easier”.

“It won’t always be this way”.

“Just hang in there!”

No.

I am broken. I have an incurable disease ravaging my body and it has only gotten worse since I have started college and on Monday, I could barely get out of bed and almost passed out just going up a flight of stairs.

A couple of days ago, my boyfriend broke up with me and as much as that hurts, it in no way compares to the pain and turmoil I have felt in not only these past two months but these past 10 years. And it wasn’t until I started talking about all of this with my…I guess as of now ex-boyfriend, that I realized I had been trying to live as though my arthritis wasn’t a problem and I have spent most of my life trying to minimize that pain because I didn’t want my parents and friends to worry.

But now, I am ready, to be honest about my struggles, to speak up when I am in pain or having a horrible day. Even though I have not been officially diagnosed, I also show all the signs of having depression. There have been many days when I have wanted to die because certainly death was better than living in constant pain. And when I am having a flare up, I never want to eat. I have to force food down my throat and force myself out of bed because the physical and mental anguish is too unbearable. For so long I have hated my body. Not out of insecurity or because I hate how I look, but because of all the pain it has caused me.

When I am not in pain, I feel mostly empty. I am learning to do things that add meaning to my life and to be around people who encourage me and are there for me as much as I try to be there for them and everything I have created here on the Internet has helped me get better, but when I flare-up, I have tunnel vision. My future feels like it’s been snatched out of my hands, never to be returned. A lot of the time I feel trapped within my own body. It controls how much I can do each day and how much I can participate in my own life and that is something that I am still learning to accept. I hate limitations and I try so hard to fix everything so I can avoid thinking about the one thing I can’t ever fix.

Me.

Chronic pain is so hard to describe. When my Celiac Disease was a lot worse and when I was still unaware that I was allergic to gluten , I would get an intense pain in my gut. The best way I could ever describe it was that it felt like someone had taken a rusty, dull blade and not only stabbed me in the gut but then continued to twist the blade around until I could hardly breathe or cope with the pain. I would just be out, shopping with my parents or playing at the park or at church and then it would hit me and I would have to pull away from whatever I was doing and go to the bathroom and would be there in the stall trying to remember how to breathe so I wouldn’t scream.

Arthritis isn’t a stabbing pain. It’s more like lack of movement. Everything aches but it’s a deep down kind of ache, the kind that never leaves. There is no getting better. There are just varying degrees of stiffness and sometimes sharp pain. It is like being hit by a bus and still being expected to get up and walk around like everything is fine. It is that feeling when something is really high up on a shelf and you keep on straining and pushing yourself to just reach, but you can’t quite make it. Then you jump and try to convince yourself that if you try again, you’ll be able to grab the thing off the shelf. But you can never grab that thing off the shelf, you can just look up at it and come to terms with the fact that your arm is not 3 inches longer and never will be.

I have finally reached a point in my life where I readily bring up my arthritis. I have spent most of my life hiding the fact that I have JIA because I didn’t want to face the questions and the pity. But most of all, I didn’t want to face the fact that I am broken.

People keep on telling me what an inspiration I am and how incredibly strong I am and I want to believe them but when I am laying in bed trying to find reasons to get up in the morning or on all those nights as a child when I cried myself to sleep, I don’t feel strong. I fell lonely and shattered beyond repair. I feel as though all the pain in the universe is condensed into my fragile body and all it would take is a word or a touch to fracture me irreparably. And maybe strength isn’t being invincible, but admitting that you are not.

Living with chronic pain is beyond difficult because you are not living. Mostly it is fighting to survive each and every day. It is like being thrown into a sword fight without a sword and you do what you can to fight back but mostly you are just trying not to die and to surrender to the opponents sword because it reaches a point where getting killed is easier and less painful than continuing to fight.

Living with a chronic illness is waiting rooms and endless questions from doctors. It is needles and examination rooms that smell like rubbing alcohol. It is sleepless nights and loneliness.  It is having people look at you but not seeing you. It is knowing that even if people are there for you, they won’t ever be able to understand what it is like to be you. They will never know how many times they have been lied to when you said “I am fine” instead of:

” I feel like dying and I am not sure if I can make it through today, much less the rest of my life but if I tell you all of this then I’ll have to face the sympathy in your eyes  and have you ask what you can do to make me feel better when there is nothing you can do and we both know it and if I tell you all of this, I will just go away feeling like a burden to everyone in my life and I can’t help but feel responsible for that. So don’t ask me if I am okay because I will never be okay. I am trying my best but I feel my life slipping away. So let me say “I am fine” because I am still fighting even though sometimes I can’t remember why”

I am also a self-saboteur. I have always struggled to take my medications because I didn’t want to face what is wrong with me. Before my relapse on March 9th, 2014, I had been eating gluten consistently for a year and that is why I fell out of remission and I have had active arthritis ever since that day and it is all my fault. I just wish I didn’t have arthritis. I hate it. And I hate myself for not taking better care of my body. I know I should have been doing more to get better and need to continue with taking my medication consistently and the only reason I have for not doing so all these years is that I didn’t want to accept that I have a problem. That I am broken.

I wish I had an optimistic conclusion to this but I don’t because the world is not a wish-granting factory. All I can say that if you are living with chronic illness, I understand what you are going through and I would love to hear your story. Be honest about your pain and don’t minimize it like I have been doing. I cannot remember what it is like to not be in pain but on my bad days, I can remember what it feels like to be alive, and all the people who are rooting for me and that is what keeps me going.

So yeah, I am broken.

But I am also strong.

 I Am Human

I walk with a spring in my step
So you can’t see me limp
I smile with tears in my eyes
But you can’t hear me crying
I am broken but

I

am

human

Someday I will rise up
Out of the pit I’ve been in
And I shall be magnificent
Are these just lies I tell myself?
To reach the other side
Where I live without

pain,

fear,

strife?

I am crumbling but

I am

being

rebuilt

Day by day I am broken but made whole
And one day, (or so I tell myself)
I will rise up above the skyline
And in ruins shall lay the old me
Right now I’m in construction
The old living with the new
Because it is human to break
It is human to crumble
It is human to build and rebuild
I am not invincible
I am afraid sometimes of my own voice
But the building blocks of the universe exist in my bones
I am human
And someday
(though it seems far off)
I will be made whole.

Leave a comment

Filed under Lessons Learned

Looking Forward: What’s Next

You know how in super hero movies, towards the end, there’s also some bit of voice over where the now recently realized hero talks about what’s next and how unexpected his heroes journey was? That’s how I feel right now. Like I’ve come to terms and processed everything that’s happened and now I’m dramatically gazing out unto a city from the top of a skyscraper, wondering what lovely and marvelous things are in my future. And I wish I could hit a pause button and capture who I am in this moment because it’s all about to change.

I remember one of the last times I felt this way. It was the summer between 9th and 10th grade and I was in Louisville, Kentucky, on the balcony of a hotel, gazing out at the horizon as the sun set over the Ohio River. And I was thinking about how everything was going to change and wondering who I’d be in the summer between 12th grade and college. Well, now I know. I’m a little more sure of myself. I know who I am, and now I have more courage to pursue what I want. I’m not sure where 14 year old me went, she slipped softly into the night as my voice grew stronger, braver than hers.

I swear a lifetime has passed since I was gazing out at that river and now it’s come full circle as I’m now left wondering how much I will change in the future. Lesson learned? There is no end to the marvelous things that can happen, if only we are open to change.

The future is uncertain, yes, but at least this time I have a clearer view of what I want and where I’m headed. In just a few days, (June 20th) I’ll be launching a second blog called ‘Philomath Maniac’ where I’ll be blogging about tips to study better, good sites to learn and learning resources/books I’ve enjoyed. I have pretty big plans for that blog so all of that is just the beginning. I also may have an opportunity to give a TED talk so that’s pretty exciting! I should be hearing back about that in a few days.

And last month, I came out with my first poetry book called “Like A Lotus”!
Basically life is a lot different from last year and it’s been hard to wrap my mind around it sometimes. I look forward to seeing what continues to happen and what the rest of this year holds. I’ll be moving to college on August 18th and it wasn’t until freshmen orientation last week that this fact fully sunk in. And the funny thing is, I’m not afraid anymore. I’m just excited. I kinda got to see my room. Well….more like I pressed my face up against the glass door and was able to see the door of my room… but it was still an exciting experience regardless!

As a teenager, naturally I’ve heard a lot about how being an adult sucks. But maybe like everything I’ve experienced thus far, it’s not completely good or bad…it’s just different, and all we can do is learn to be okay with that and learn to take life as it comes. And maybe the scariest thing about being an adult is the uncertainty, the lack of control in the parts of our life that we’re taught that we should have all figured out by 18. So truthfully, all I have are plans. I’m not sure what comes next. But I’m learning to be okay with that because life is life. It’s exciting, scary, and full of change. But to me, that’s what makes it so great.


 

Save

1 Comment

Filed under Lessons Learned

Looking Back (advice to high schoolers)

I’m not really one for looking back. Actually, if you were to ask some of my closest friends, they would probably say I never look back. I’m very future-oriented. I’m more than ready to put the past behind me and focus on college and all the many opportunities that will bring into my life. I don’t believe in dwelling in the past so it feels strange to be doing this at all, but a recent youth group gathering got me thinking about a few things. This past Sunday, my youth group leaders spent the evening focusing on all of us seniors in the group. They’d put together a list of questions for all of us, advice and such we would like others and our younger selves to know. I actually wrote a similar post about advice to younger me so today I’m doing something a little different. So this is for my high school readers, specifically a friend of mine, Esther. I read once that we should always have someone in mind to write for so this one is for you.

Dear Esther, (and other high schoolers)

Learn broadly and intensely. And I don’t mean just for school, I mean read good books and have late, 2 am conversations with people you love about anything and everything (i.e. I once stayed up till 3 in the morning discussing what were the MBTI types of all the characters on “Gilmore girls” with my sister). Learn about different cultures and don’t be afraid to ask questions. Lots and lots of questions. And I know right at your age, understanding and loving a lot makes you stand out, and not always in a positive way (believe me, I know!), but you will be a more interesting and well-rounded person because of it.

Another thing to remember is that high school is not the ‘best time of your life’. It’s just time, and like all time, you need to decide how you want to spend it. And, it gets better, it really does. I know it may not feel that way sometimes, but it’s called a life cycle for a reason. Good times roll around along with the bad.

I would also like to remind you to believe in yourself more. And I know how hard it is because you have all these thoughts and feelings, hopes and fears and it seems like just because there’s a ‘1’ in your age, that people (okay, fine, ADULTS)  will use that as an excuse to deny you respect and validation as a human who is capable of doing things and you’re given ten billion reasons to hate yourself and to lose faith in what you can do. But please, please, don’t. You will figure out who you are and it’s a long, messy process so be patient with yourself.

Don’t give up and don’t underestimate all the amazing things you are capable of. This is something I have struggled with throughout high school. I never really believed in myself. I let myself live by a long list of all the things I couldn’t do.

Also, forgive yourself when you mess up. Because you will. A lot. But just remember that it’s okay to change. It’s okay to change your habits or your hair or your clothes. Most importantly, it’s okay to change the way you think. You don’t have to hold certain opinions just because your peers, or even your parents do. (For example, I am a feminist.)
It is important though not to waver in your integrity. Test yourself and everything in your life by asking: “Is this right for me personally?”

Be a leader. You don’t have to be loud and commanding to do so. My mom would always tell me to set the example and that actions speak louder than words. And so with everything, I try to ask myself: “Am I making things better by saying/doing/behaving like this….or am I just making it worse?”

But on the other hand, if you have to choose between ‘helping’ someone at the expense of harming yourself (either mentally or physically), choose to protect yourself. Know your limits. Know what kind of people are good for you and what people are toxic. For example, I know/have known a lot of people with mental illnesses. I’ve learned that I can help people with depression/anxiety without harming myself. But not a lot of people can. But anxiety is where I draw the line. I can’t deal with anyone with bi-polar, sociopathic, narcissistic, tendencies. And then there are just some people that are toxic for other reasons.

Be open to meeting new people. Please don’t form cliques. Just don’t. Not only does it exclude others, but you’re harming yourself by blocking yourself off from many learning opportunities. Speaking of learning, learn from anything and everything. Learn both from the mistakes and triumphs of all those around you. No one is ever completely wrong or completely right.

And lastly, I want you to remember that nothing is ever irreparably damaged. There will, of course, be days where you feel like a fragile glass figurine and all it will take is a touch or a word to crack you into a billion pieces and you’ll be lying in bed, staring at the ceiling (maybe crying), and wondering if this chaos and pain is some inevitable chain that will forever keep on twisting tighter around your heart. But it’ll get better, you’ll grow stronger, I promise. And along with those dark days, they’ll be some moments that you’ll want to live over and over again because they’ll leave you full of hope and a grand love for life. That’s just life. Simultaneously perfect and horrid at the same time. Hold it all close to you because all these moments will soon be a fleeting wisp of what once was, and someday, you’ll look back (much like what I’m doing right now), and be in absolute awe of how everything came together.


 

 

 

 

 

 

Leave a comment

Filed under Lessons Learned