what happens when the fight doesn't stop


everyone knows that when people talk about "the fight" it's usually in reference to some sort of long or short-term battle. that battle could be any number of things, the flu, cancer, a breakup, a surgery, a tumor, you get the idea. this "fight" is something an individual goes through knowing that they will (hopefully) come out the other end of. they will beat it, win the fight, and move on.

but what happens when the fight doesn't stop?



it's so hard to put into words what a chronic illness is like which makes it even harder to explain to people who have never heard of such things especially since i tend to be rather jovial when explaining what my chronic illnesses are and what they do to me. my desire to make sure people aren't uncomfortable ends up masking how serious these illnesses are and therefore give those people an inaccurate idea of what i'm going through.
so, let me lay it out for you plain and simple.
i have a degenerative collagen and connective tissue disorder. it has no cure. it has no known effective treatment. it will get worse. it puts me in an extreme amount of pain every day which i have learned to cover up easily. on a "good" day my pain is about a 7 out of 10. on a bad day it feels like an 11 out of 10. this disease, known as EDS, causes my joints to dislocate a lot which in turn makes my body (specifically my legs) very unstable and painful to exist in.
i also have a heart condition called POTS that can be cured in some patients, but not in me. because of my eds it will not go away, but it can sometimes be managed (we're still working on that part). it makes me dizzy, i faint, i feel out of breath. my heart doesn't pump blood correctly when i'm standing so it just kind of drops it all to my feet which also causes pain.
there are other co-morbidities that come with these but i won't go into a ton of detail about them or we would be here all day.

these are chronic illnesses.
lifelong.
forever.

we focus so much on the type of "fight" that has an end, a way out, something to look forward to and hope for.
but in doing so we forget the fights that won't end. it's been a year since my first diagnoses and 10 months since my second and third and i'm still fighting. i will have to fight every day until the day i die, and only then will my fight be over because i will finally be in a perfect body that is able to do all the things i haven't been able to do in years, because there i will be dancing with the one who made me, illnesses and all.
i'm not asking for attention, but i am asking you to not forget us. please do not forget the ones whose fights will never be over. please remember that some people will fight and pray and work and go through surgeries and doctors but never win.

looking on the positive side of things has kind of become something i'm rather good at, but i've found that it often minimizes the severity of the subject.
as much as i want to end this with a sweet "we got this" message - i can't
i have to remind everyone that these fights are brutal, they destroy us, they change us, they make us better and they also make us worse. they won't end until we do and that is so utterly terrifying. it wrecks us every morning and reminds us of all the 'used to's and 'what if's. some days we can wake up with vigor and energy to fight only to taste bitter defeat when we feel like it's useless. chronic illness is a beast we have to fight daily, there is no stopping it, no getting out of it, no other side.

so, what happens when the fight doesn't stop?

you keep on fighting even though your body is fighting itself
you keep fighting when you know you're on the losing team
you keep fighting even though nothing may come of it
because when the fight doesn't stop, neither do we.

Comments

  1. That is extraordinary Abby. Being far away (or out of the loop per se) I wasn't filled in to this degree until now. I had no idea what was involved. I'll be there soon to give you and Nicole a big hug. Very proud of your perseverance and faith in yourself. Love you always.

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  2. Abby, you have a gift for words, as well as a gift of putting them together so beautifully! You've opened my eyes to the definition of chronic. I think the numbers on the pain scale on a good and bad day did it for me. I met you when you were just a little girl, when I'd come to visit your mom with lots of other friends when we all had young kids. So knowing 'of you' for so many years, and getting a glimpse of your life as an adult is surreal. What a beautiful spirit you have. I see your mom's strength when I read your words, and I'm so glad you are that strong young lady. Many, many would have given up long ago and turned into bitter people over something this severe. Keep writing, keep sharing, and keep shedding light so that others who don't have your gift of words can point to articles such as this to help others understand what chronic pain is, and how it affects one's life.

    I'm so proud of this beautiful young lady you're blossoming into, and look forward to reading more of your heart.

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