Don’t give up. Words that we often hear muttered by strangers who aren’t sure what to say, or family who miss who you were before you got sick, or friends who don’t understand, or doctors who are looking for a way to end an awkward conversation. You know the conversation I’m talking about, the one where you’re crying because every aspect of your life has changed but no one can give you any answers on how to get back to where you were. The conversation where you struggle to get the words out or string a sentence together because your body is shaking with the heaving sobs. It’s the conversation that everyone diagnosed with an incurable chronic illness has at some point, in some form, because how can you not when receiving a lifetime diagnosis of an incurable illness that will change everything about your world?
Don’t give up, they assert, hoping it will appease you because they don’t have any other words of advice to give. Don’t give up, they sigh, wanting you to magically snap out of it through the power of thought and return to who they want you to be. Don’t give up, they utter, because they are watching you seemingly fall apart and want more than anything to help hold you together. The intentions are usually good, and yet, the phrase bounces off of me as the voice in my head screams, “what other choice was I given?!” It shrieks at me as I try to hide the truth behind a smile, the truth that sometimes I want to give up.
I want to be fully honest with you all, so today I’ve chosen to open up my heart and bleed onto the page. I have had so many people tell me that I inspire them with my positive attitude or my drive to keep fighting, but the truth is that there are many times when I don’t want to fight. There are times when the anger and frustration I feel at being forced to fight every moment of my life aches and burns straight down to my bones. There are moments when I am filled with bitter resentment at being given a life of endless struggle. I want to share all of this anger and agony with you, because I have a feeling that you, too, have days where you want to throw in the towel and stop fighting.
And, yet, what I want to tell you all more than anything in the world is: “don’t give up.” Before dismissing me as a hypocrite and brushing my words off as another empty gesture, know that when I tell you “don’t give up” I say it with the complete understanding that “giving up” looks different for every single person. Hell, it looks different to me depending on the situation, day, feelings, goals, or weather. So, when I say “don’t give up” to you, I don’t mean for you to cling onto being the way I think that you are supposed to be, a subtextual meaning that often lingers behind those words as they are uttered by others who don’t understand their impact. I mean, don’t give up on whatever you need to hold onto for that day, that minute, that fraction of a moment. Whatever it is you feel the urge to hold onto, hold onto it and don’t give up.
When I first became disabled by my illnesses, I was told not to give up quite often by many different people. I heard it when I cut back my hours at work, when I got a wheelchair, and when I applied for disability. The general comment seemed to be telling me not to give up on being abled or healthy, to hold on to those things with all of my might. But, admitting I was disabled wasn’t me giving up. In fact, it was freeing. Accepting my body’s limitations helped me to balance out what I was capable of doing each day, and to stop wasting my precious energy on things that didn’t matter. To many abled people, admitting I was disabled was like admitting defeat, but for me, it was me choosing not to give up on the things I loved most in my life. Stepping back from the job I loved hurt, it felt as though a piece of me was ripped out, but it wasn’t me giving up. It was me recognizing that I had a choice to either work or have energy to be a mom, and I chose my daughter. I chose not to give up.
So, don’t give up. Even if all you can manage to force yourself to do is to keep breathing, do it. I have fought my way through days where it takes all the strength I have to go on existing. Not because I contemplate suicide, but because I get wrapped up in the fantasy of nonexistence. A misty dream of nothingness: no pain, no hurt, no tears, no sadness, and no guilt. Or days when the idea of growing old fills me with dread because I cannot begin to imagine how the regular wear and tear that comes with old age will mix with my EDS body that already begs for rest after the slightest amount of activity. Days when the uncertainty of the future hangs over me like my own personal rain cloud, and it takes everything I have just to keep pushing through the day, knowing it only brings me one day closer to the future I fear. Most people would look at me during those days and shake their heads, clicking their tongues while saying, “she just gave up” because they don’t realize how much I’m fighting for every single breath I take.
There are so many different ways that I refuse to give up. There are days when I tackle each obstacle in front of me with a smile and bright optimism. There are stretches of weeks when I force my way through by writing even when I don’t feel like it, or exercising even when my body aches, or going to see the friend I wanted to see, or throwing my daughter a birthday party, or simply making it out the front door. There are moments when I’m suddenly hit with a severe flare, where I literally drag myself from where I am to wherever it is I need to go, all the while breathing out the words “it’s ok, you’re ok, you can do this, just get to the bed, you’re ok, you’ve got this,” because that’s the only way I know how to keep myself going. No, there is no one way to refuse to give up.
Don’t give up. But, also, don’t let anyone define what giving up means to you. Don’t give up. And, don’t chastise yourself for not living up to the standards of people who will never understand just how much of a warrior you are. It’s not your job to inspire others with your story. It’s more than enough to try to simply inspire yourself to keep going. Forgive yourself for the days when you want to give up. You aren’t weak because you get tired of fighting, or for feeling angry at the world for denying you the life you’d hoped for. You’re human.
Be kind to yourself. Be true to yourself. And, don’t give up.
As an extra bonus, I will leave you with a song that helps get me through even my roughest of days. Enjoy:
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