For everyone else, this last year of high school is a step they need to go through to get to the brighter beyond. But for me, with every passing day, the anxiety grows. When I got sick in 9th grade, I thought I would be better by 10th. When I wasn’t, I prayed it would be gone by 11th. When it wasn’t, I closed my eyes and pretended that there just wasn’t an option of me not being better by the time I graduate.
But it’s getting closer and closer, and I’m staying the same and the same. Trapped in the same constraints, suffering from the pain and loneliness, and quivering with anxiety. Because when I imagine my future, I am healthy. When I think about choosing my next path, I am healthy. When I think about colleges, dating, careers… I am healthy. But I am not healthy. So what’s going to happen?
Up until now, I haven’t let myself seriously consider what will happen if I don’t get better by the end of 12th grade. But the last few days, and today especially, I can see it crystal clear. My friends will move on. They’ll still love me, still support, still care for me (because they’re awesome), but by the nature of things, they will move on. They’ll be living farther away from me, be very busy, and probably be struggling with adjusting to their new environment. Being the kind of friend that I am, I’ll try to be supportive, listen to them and be empathic to their struggles. But inside I’ll be thinking, damn, I wish I had your issues.
I’ll be feeling lonely, because I’ll be seeing them very little. Conversations will probably take place over the phone or via text. Weekends they’ll probably want me time, which is legitimate, they’ll be tired from a long hard week, and anyway, there’s not much I can do anyway. I get tired, you see. I’ll try my hardest not to become a burden to them.
But I’ll feel lonely. And they’ll move on.
So how will I fill my time?
I can come up with a few things to do, my teachers at school are trying to help me make plans. It just sucks, because they aren’t the plans I want to make.
I can picture myself healthy so easily. How much I would bloom and love life. It’s not like I think life would be perfect, I know I would still have problems, but I would just feel so free. This happiness, that I have inside that is beaten back every day as I feel pain and every night as it keeps me from sleeping, I would finally be able to call it my own.
I need to find a way to insure that even if I’m not better I won’t let myself go, because that would be so easy. I can feel the temptation already. Nobody else knows how hard it is for me, how much goes into just putting a smile on my face, into getting out of bed in the morning. I’m tempted to not get out of bed. It would just be so much easier. Life would hurt so much less. I wouldn’t be looking at everything I can’t do everywhere I turn.
Isn’t that just really what I want? For it to hurt less? It hurts so much. I talk about the emotional part of it all the time, but physically it’s just too much already. How much longer am I supposed to be able to withstand this attack? How long is it going to be until something in my body just fails? How long is it going to be until my inner strength just runs out? How many more tears do I need to shed in order to get through a day? How many more times do I need to sob and ask god what I ever did to deserve this until I can get some respite? HOW MUCH MORE DO I NEED TO SUFFER?
I can’t take much more. Every day this smile feels a little bit faker. Every day this laugh feels a little bit more forced. Every day this will power gets chipped at a little bit more. Every day my eyes grow heavier. Every day I crave affection, support and reassurance more, but the level I receive remains the same. Every day my breathing becomes more labored. Every day I just try to fill the void. Every day the doubt grows infinitely. Is this my destiny?
Ella.
Song Quote:
Give me love like never before, cause lately I’ve been craving more, and it’s been a while but I still feel the same. –Give Me Love, Ed Sheeran
Sick and Sick of It 
Ella,
I can, very much in part but very much all the same, understand your pain. I had a slight eating disorder during my sophomore year of college, developed hyperthyroidism after loosing all the weight, and felt pretty awful symptoms of uneasiness and anxiety as a result for months– all without knowing I had the condition. Eventually, doctors figured it out, but because I had started to eat regularly again, the condition wasn’t “bad enough” to take medication. This was almost three years ago now, and I am finally at what seems like the near end of a long battle. In the worst of it, I, too, would think of my future and imagine myself healthy and happy. The truth is, we all don’t know what tomorrow could bring– for you, it could bring more struggle, it could bring a cure. But what matters is your mindset. If your mind beats this, and continues doing wonderfully productive things such as sharing your important thoughts and ideas on your blog, I know your whole self can beat it, too. Good luck, and thank you for sharing! RJ
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I hope you find strength every day even it is small…
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What IF it will get better tomorrow or next month or next year or in ten years. What If there is something else around the corner that will feel good. It may be tempting to give up but then you may miss out on God’s Plan, for you are beautiful and special. My prayers to you…
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Ella, You will not be alone. Your friends and family will stand by you and give you comfort. They will always be there for you. It is extremely difficult to have a disease that leaves you in pain and depression. But, fight for yourself, even though it may be hard and some days you may want to just stay in bed…fight it with all your heart. Others can not know your pain, but they can support you and stand by your side.
You are a marvelous writer and you are a voice for others that suffer with the same malady. You have a gift that others are happy to share.
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Your blog looks fab! The way you write about your life is very teachful and extraordinary. I wish you all the best and I will keep reading your stories just that you know that someone is listening :) don´t give up!
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Just so you know, not that I think you care. I “liked” it from a support and not from that I like what’s happening, stay strong.
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Such good advice and wisdom. I have nothing valid to add except I join in hoping for your recovery and will pray for it. I felt the words, ” You may not get to choose not to be ill, but you can decide how your life goes. ” to be excellent and heart felt advice.
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Thank you for writing, Ella. Your words are the voice for more people than you know. My father used to say that we are never given more than we can handle, so you must be one strong soul to endure this path. As a high school teacher, I am struck by the maturity in your writing, and can guess that you are a gift to those who know you. Keep plodding along and know that I, among many are waiting here for your words.
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Hi, Ella,
I am praying for you that you will find healing and relief from your pain and loneliness, and that your medical team will find a breakthrough in treating you. May you find peace, rest, and joy. Blessings to you, dear Ella.
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I have RA. I take one day at a time…
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I lived in chronic pain for as long as I can remember. Do you know anyone in your ‘real life’ who suffers as you do? I found so much help and support talking to another disabled woman who had been ill and in pain for longer than I had. She had the experience and could identify with what I was going through. When she told me it was okay to give up – as long as I was willing to hang on until the next day – I felt I had finally the permission to feel how I really felt, instead of pretending all the time and pushing myself all the time. She modeled for me a way that a person can have a real and full life, regardless of pain. The pain doesn’t define me. Yes, it limits me, in that I simply cannot do what an able-bodied person can, and what I can do I can’t do as long. Still, I get much joy out of doing the things that I love, that I *can* do.
There is a lot of grieving to be done, and a lot of investigating possibilities, and none of it can happen quickly, and I don’t think any of it is easy. I expect you’ll need all of the help and support that you can get, whether online, from friends, family or helping professionals. Don’t be afraid to ask for help. One thing I can assure you is that it does get better. Whether or not the pain goes away, it gets better as long as I keep focusing on the things that make my life better, that make me happy, that give me fulfillment.
I wish I could help. I’m an old lady now (fifty) butI remember what it was like, and I wouldn’t go back to those days for anything. I hope you can find people who fill the gaps that you feel. Hang in there. {{{{{{Hugs}}}}}}} Your destiny isn’t written yet. You may not get to choose not to be ill, but you can decide how your life goes. :-)
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Hi. My heart goes out to you, and my sincerest hope is that you grow through this and become well again. There’s so little I can say that will mean anything, or sound other than puerile and sententious, so I will forebear, other than to suggest to you that how ever dark it seems, life is always worth the battle. Best wishes for a brighter morning.
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Sending hugs your way, because I have found that just one person sending or giving me hugs a day makes a huge difference, so I hope it can make a small difference for you. :)
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I just wanted to let you know that I’ve nominated you for a Liebster Award :) You can check out my post for more info…
There’s no pressure to participate, but I think your blog is great!
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Thinking of you today! Praying for peace. Hope that is a help! Hugs xxx
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This IS a hard path! Just know it you have a team of people right here behind here cheering you on!
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Dear Ella,
Haven’t been reading much lately but stopped by to catch up on a Sunday morning train on a cool fall morning and just wanted to say hi. Time and tide and people too find their way.
Sending love
TJ
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You’re the bright light and inspiration to many,. We are praying for you.Ella.
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Love, I feel your pain. The thing that causes the most pain is our life not being the way we expected. There will need to be a grief process to put this down BUT it does get easier when you take it as it comes.
I would suggest talking to your friends very open and honestly about needing them to put forth the effort to maintain the relationship. I surely do not have the same relationships I had before I got sick and Ive been bitter about it but the honest to God truth is that I have who and what I need. The need for affection and support is real. I had to learn to support myself in those moments when no one else could be there because sometimes they cant, not because theyre not available, but because they cant understand. I have found great reassurance by joining a support group on Facebook for my particular illness. Its been a God send. I hope you’ll look into it and try it yourself.
Things are gonna get easier because you’re going to get stronger.
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Hi Ella,
I watched my son go through 30 months of leukaemia treatment that started when he was in grade 3. He couldn’t put his thoughts into words as eloquently as you can, but his days were wracked with pain. the late effects have been devastating. He has four credits from high school, and he is 21.
He can’t see that there will be better days. I hope there will be for him.
I hope you will have better days than these recent bad ones. There is still a good chance your fibromyalgia will get better, and this article, from Consumer.healthday.com, has some hopeful points. If you read about this study, I’m sorry to be telling you what you already know. These are the rules we live by in my family:
1) BE EASY ON YOURSELF! Life is already hard enough.
2) Fake it until you make it.
3) Be open to adding a mental health worker—shrink, psychologist, counsellor, social worker—to your care team. If you have one who is no longer helping you, switch them out for a new one. Many physical illness have huge impact on our mental health, and fibromyalgia is entwined with depression and anxiety. Maybe you should try, or try switching, anti-depressants.
I hope you have better days soon, truly.
Jacquelyn
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I was also sick in high school and it’s so hard!! Hang in there!
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Praying for you, love. You’re strong enough to get through this. xx
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I am sorry for your pain. I am sorry that the tears don’t make it go away, that explanations to your questions can’t be found. Don’t you dare give up. And yes I can and will say that. I do know what it is to begin the battle early…and later I grew to know what it is to begin the battles before one can speak . I can and I will say these things. SOmetimes we need arms around us but the truth is that you don’t have the luxury to stay there. We all have a wagonful of our obstacles, of our pains and struggles, of our tears… each of us. And while some be lighter than others at times, for the most part, most of us would not change what’s in ours for what’s in another’s. I have seen that life IS unfair. It has been and will be unfair to those younger still. Some are born without the hope of speaking, thinking as we do, writing, reading, walking at all ever. You see your future is not stolen from you unless you choose to stare at that point. You are the only one who can change that perspective. We all do have those times when we feel badly for ourselves. for how things turned out. Truth is that no one’s life turns out as they have dreamt. Life is full of bends in the roads and bumps. We can let these decide it’s our turn off- or we can choose to go far beyond. There was a lot I believed would be different. The truth is that isn’t rare or unusual. Living isn’t having all the ducks in the row. It’s essential to know how to adjust and adapt. It’s important to believe in ourselves. It is all that’s left to us in the living of life. It’s in celebrating that we go beyond the expected, the smooth sailing. Our plans that become our future don’t belong being compared to how we thought things would be in a youth before things all became clearly a different path. They are not better or worse. They are different. They are the things we accomplish that we would not have done perhaps if we didn’t have to motivate ourselves in a different way. I am not blowing sunshine at you. It is hard. But that’s okay. That just proves how damn strong we really are. And that becomes more and more important to you when you tire of others thinking you are weak. Life isn’t here to be easy or totally organized and expected. Growth is rarely smooth or easy. Life is all about growth. If it weren’t for what is difficult, we would not grow. I don’t go so far as to think we need be thankful for these diseases, these restrictions and limitations. But there are many who never live to the age when our struggles began. It IS therefore a privilege to be alive-whatever our ages. And that is why we don’t have the right to not make the absolute most of our lives. There are many who would wrap their arms around life- even our lives… for another day, for another hour. You are bright. And in that brilliance you have been preparing your entire life for the challenge of living your present and your future. Keep your head held up. Remember that you are more than capable of coming into your own. And yes there are times it is lonely and nearly paralyzing. But we have to set a limit as to how long we allow ourselves to mourn, to stay down. Use your wings…they are there. Stay strong. Believe in yourself. DOn’t be afraid to spread your wings and fly.
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A hug to you :)
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I got sick in 9th grade also, I am now 20 and still haven’t even graduated yet. I have no idea what my future will be, all I can see is this empty blank void in front of me, and it scares me. I know its hard, but try to focus on what little things you can do, no matter how small or insignificant they might seem. Managing to take a shower, exercise, finish a chore, or go grocery shopping are all major accomplishments when you’re sick. Even though its tempting, you can’t compare yourself or your life to people who are healthy, they don’t struggle with the things that you do.
Jeremiah 29:11 <3
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I wanted to cry when I read this; I wanted to hug you and somehow reassure you that you will feel better, that one day your pain WILL go away. I don’t know what will happen for you, but I want to be on the list of people who know when you feel better! In the meantime I am thinking of you, I am praying for your health!
Sent from my iPhone
>
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The fact that you read this means you’re already on the list, but you’re a VIP :) Thank you! The kind comments here and an especially kind email I received from a reader helped me through that hard day
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You don’t have to smile today. You don’t have to be superhuman. If it takes all of your strength to just get through today, that’s okay.
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I am so sorry that you have got ill at such a young age. I want to tell you what ever age you get sick at we all have the same worries and struggles. This certainly wasn’t how I planned for my life to be it it is very hard to accept and it is normal to be angry! You are going through a grieving process for the things you have lost and the future you feel robbed of. I just wanted to let you know that I hear and understand what you are saying. You will be in my thoughts.
Much love
Rach xx
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