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To a Friend With a Chronic Illness Who's Feeling Hopeless

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Dear Friend,

I’ve thought about it. Years before I even had to struggle with an invisible illness, I thought about it. Depression was rampant and, at times, I didn’t even realize what it was. Hell, only recently I realized my method of thinking might not be “the norm.” However, none of that changes the facts: I’ve thought about it.

Having struggled with clinical depression though, I have to say that — in my experience — chronic illnesses seem to bring its own kind of depression. And, just like my clinical depression, it isn’t something that can be easily explained. But I will try, because I’m just that audacious:

It’s like you wake up one day and the life you knew is gone — except, you don’t know it’s gone just yet. At first you think you’re just tired or pushing yourself too hard or fighting a cold. But then, before you know it, everything is different. You dedicated your life to a sport you loved? Too bad. You want to pick up your niece and nephew for a hug? Ha. Try just getting out of bed to go to the bathroom. And wait! You want to go hang out with your friends but you have to tell them, again, that you can’t? That you spend most of your life sleeping? That even when you’re awake you aren’t really there?

And that’s when you think maybe the life you knew might not come back.

And you’re just stuck. And you feel alone alone. And you’re just there, in your body. A body that’s breaking down for a reason you don’t understand. A body that is suddenly an enemy. You spend months staring at the mahogany fan in your bedroom — the dust on the edges of it, the frosted bowl covering a single light bulb that has burned above you while thinking about all the walks you haven’t given your dog, all the birthday wishes that have been made without you, how you’re too exhausted to even read a book or watch a movie. You become certain there are more moments in your life that you’ve missed rather than been a part of.

And as you continue to watch your life move past you, seasons changing out the window from your bed, you feel bad for thinking like that. All you want is an answer to why who you once were, and how you once lived, is gone. But you can’t explain that to people. You can’t explain that loss and that hurt and that longing. Because you have two legs and two arms and a heart the pumps and lungs that breathe and there should be “no reason” why you are bed-bound.

And maybe that’s when you get lucky. After years of searching you are overjoyed (yes, overjoyed!) to find what ails you. It has a face, it has a name — dysautonomia, ehlers-danlos syndrome, Lyme disease, lupus — and, without knowing it, you become one of the strongest people ever to exist. Because true strength is gentle. True strength is quiet. True strength is in the little battles you make second after second after second of every single day.

But you don’t feel strong. Not in the slightest. All you feel is the fatigue. All you feel is the weight of the things you cannot do and the shadow of the life you once had. Of the family and friends and loved ones you are certain you’ve become a burden to and the choices you have to make day in and day out (“Do I wash my hair and feel like shit for the rest of the day or do I sit in filth and stay awake for more than 30 minutes?”) And through all of this that damn ceiling fan does absolutely nothing but stare down at you – the dust on it even thicker now – because you’ve been there for days. For months. For years.

Of course I’ve thought about it. And, of course, I wish I had something more than platitudes to tell the person I knew who died by suicide — to tell anyone. Because it is easy to feel a hopelessness in a chronic illness — especially an invisible one — that only those who have it can understand.

So what is there to say? I try to think about how I’m not alone, because that is true. I think of all the friends I have found because of my illness. I think about all the things I’ve discovered about myself that I, otherwise, wouldn’t have. How my body has forced me to listen to it after years of ignoring it. How I respect it now, how (when I’m not unfairly angry at it) I appreciate it — in all its strength and its weakness.

I think about how the little stuff became big stuff: microwaving a meal on my own, managing a shower, walking my dog to the mail box and back, staying awake through an entire movie. I measure my successes in the tiniest of these things — things most people don’t even think about. Until one day I stopped to see that years of these “little things” brought me to teaching autistic/children with Autism for eight hours a day. Sure, I was beyond exhausted and some days I hurt more than I could understand, but I was doing it.

Even then, though, I think one of the hardest parts is not knowing if we’ll feel OK tomorrow… shit, if we’ll feel OK in five minutes. If we’ll ever really feel “OK” again. “I might never get better” is a scary, scary thought, but a fair one, don’t you think? With all you have been through? Everything you have dealt with?

I think so.

So, I don’t know. I don’t know what to say. I know that in my darkest moments, I did everything I could to find something to hold on to. I took pictures from my bed and discovered a love for photography. And I told myself, over and over, that even though my body might be sick, my spirit was whole.

And while I don’t know exactly how you feel, my friend, I understand.

I understand.

So, please, do not let go.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Originally published: February 9, 2016
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