Coping With Chronic Illness: When Hope Becomes The Poison, Not The Cure

Being sick is hard. I realise that is the understatement of the year. But hope and disappointment can be such a destructive cycle, which it has been for me.

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Think about it this way. The difference between me being able to live my life, versus endlessly laying in bed day after day, is Plasma Exchange. It’s the reason I stopped avoiding thinking about the future and began to plan my life again. That is how meaningful and life changing this treatment has been for me. It gave me hope.

So what’s the problem with that? Aren’t I getting everything I ever wanted? Aren’t the answers right there? 

No. Not when I can’t access the treatment I need.

For the past 3 months, I’ve been getting treatment only once a week – if I am lucky. The thing is, I need treatment at least 3 times a week, or else I start to deteriorate.

So here I am. Deteriorating. When the answers are right there. But I can’t access it. It’s like the key to getting my life back is slipping through my fingers but I can’t do anything about it. Everytime I get treatment, it isn’t about me getting better, it’s now only really just stalling how quickly I deteriorate. It is crushing.

I’ve thought about it long and hard. Why does this hurt so much? Isn’t something better than nothing? Isn’t this better than when I had no treatment options at all?

All I can really say is that I can’t do hope.

Hope is poison to me.

Without Plasma Exchange, I accepted that my life will not being going as planned. And that was okay. I love my wheelchair. I could live with that. I could still be very happy. I was, in fact, very happy.

But with Plasma Exchange, it showed me that my life didn’t have to be this way.  I don’t have to be in a wheelchair. I could graduate. I could have a job. I could do all the things I never thought I could do. I started to think about the future again. I started to be hopeful again.

But every time I began to recover and regain my independence, every time I got excited that I could kind of take care of myself and do normal things again.. it’s just gone. It just keeps getting taken away. Every single time.

My hope turned out to be false hope. My hope just leads to disappointment.

I still held onto the hope the first time I relapsed, and the second, and the third.. but now… it’s just hard to see why. I put so much hope and promise onto this treatment, but look where I’ve ended up.

One year of treatment and I’m doing worse than where I was last year. 

I could do everything in my power to get better – eat right, take my medication, rest day and night, write letters to the government, contact the media – I’ve done everything I could possibly think of in order to get better and get treatment, but I’ve still ended up in the same place. There are more cuts to healthcare than ever. And it feels like no matter what I do, I am not in charge of my own destiny. I am not in control. I have no say in my healthcare. My treatments are not being cut because it’s in my best interest medically, it’s because there aren’t enough resources.

It’s not fair.

But life isn’t fair, as we all know.

I shouldn’t have put all of my hope into something I can’t control.

It was my own mistake. A costly one. It has spiralled into severe depression. I’ve withdrawn from the world. I have barely felt any bit like myself. It’s become harder and harder again to leave the house. I keep getting a taste of normal life, it makes me want more, and then it all just gets taken away from me. Over and over again. It is not easy.

The only thing I can do is change my frame of thinking since I can’t change my reality. 

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For me, it is easier to stop hoping. Hoping just leads to pure and undeniable disappointment. I know that it sounds like I’m giving up. But not hoping doesn’t mean I’m giving up. It means quite the opposite really.

How can you be happy if you want nothing to do with the way your life is right now?

How can you be happy if waking up everyday is a disappointment because your life isn’t going the way you want it to, but you can’t actually do anything to make your life what you want it to be like?

It’s simple. You can’t.

You can’t be happy with your current reality if you want nothing more than for your life to be different.

How do you remedy that? Acceptance.

I have to once again learn to accept that Plasma Exchange isn’t the answer. No matter how badly I want it to be the answer, it won’t be. I can keep holding onto false hope that it will change my life, but that will get me nothing but disappointment.

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I might be sick forever. It may take me 10 more years to finish my undergraduate degree. I may never be able to work. These are all things that might be true, whether I like it or not. And I have to accept it. I have to learn to live with these facts again, because if I don’t, I will never be happy.

But again, none of this means I am giving up. It means that I will try to do everything I can to get better, but that I won’t depend on getting better in order to live. No matter how little hope I see in Plasma Exchange at this point, I mean I still haven’t given up and just quit treatment altogether. And I won’t. Someone wonderful recently reminded me that no matter how hard things have been for me, it is true, I still haven’t given up.

“You might feel that way but your goal is still in the forefront of your mind and my goodness do you fight. It is important to acknowledge that despite all of your constant setbacks, you have not given up! Many would have already but you want to gain a better quality of life and you continue to fight on even during your weakest moments. That fight is not easy for any of us so we completely hear your upset and how we just go round in circles without getting better. Keep envisioning where you want to be despite your health issues. Yes there are days where that prospect is upsetting but it shows that you really want it! Hearing from others that you will get there is heartbreaking, because it never seems possible in chronic illness. But with your attitude, I know you will get there eventually because you remain hopeful and optimistic despite everything you face everyday. It Might take months or years but you know you want to better yourself and your life and that prospect means it can’t be completely impossible. Hang in there.”

And I won’t give up.

I will accept my situation. I will still try treatments and whatever else comes my way in order to regain my quality of life.

If I get better, it will be a nice surprise. But if I don’t, nothing will be lost.

I will not pour my hopes and dreams any longer into a healthcare system that is unsustainable and has let me down time and time again. I will not spend my time hoping and wishing for treatment anymore. This is all easier said than done. But I will get there. One day at a time.

Living with chronic illness can be a nightmare. It is a nightmare.

But it doesn’t have to be, not if I accept my life for what it is, instead of hoping about what it could be. Because it doesn’t matter the way it could or should be.

What matters is the way that it is. The here and now. And that is something that I will have to learn to accept again.

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