“Well, since you’re off now…”
That’s the beginning of a very loaded statement usually directed at me by well meaning individuals that simply do not understand what it’s like to live day in and day out with multiple invisible chronic illnesses. It’s a common assumption since I’m no longer working I have unlimited time on my hands to help with whatever comes up. It’s as if to some I’m on a permanent vacation. I’m here to assure you, this is NO vacation!
To clear things up, I’m not just “off”. I’ve been living with chronic illness since I was 7 years old. That makes nearly 32 years of doctor visits, multiple diagnoses, hospital stays, surgeries, lab draws, etc. For the most part, I’ve been able to live a “normal” life. I say normal in quotations because for me that means in spite of the unrelenting pain, at times unexplainable symptoms, and the side effects to medications and such, I’ve surprisingly been able to blend in. As long as I was smiling, had my make-up on and hair styled and I was going to school or work, no one really knew or questioned how sick I actually was. That all changed in July of 2011. It’s literally like someone flipped a switch. Things went from, “okay, I can navigate what life has given me” to “how in the world am I going to survive this”.
My life changed almost overnight. I spent the better part of 8 months searching for yet another diagnosis. Finally at the end of February 2012 I received one, but little did I know the uphill battle had only just begun. I pushed myself to try to continue to work and be “normal” because after all, I had a diagnosis and a treatment plan. It wasn’t a cure mind you, but my expectations were high, as they always were. Though it seemed the more I pushed myself the more my body was failing me, treatment or not. That was a hard reality to accept. This reality became more glaring when I had to resign from my long time job in August 2014. It seemed everything I feared over the years was coming true, and there was nothing I could do to stop it.
Since I’ve been “off” I’ve spent time adjusting to and rejecting new medications. I’ve had monthly infusions introduced to my regimen and found out that I will need these for the rest of my life. I do have good days here or there meaning my pain level is only a 4-5, and I probably didn’t take any pain medication that day. And yes, you will likely see me out on those days if I can make it happen. I live for my good days. However, for every good day I have there are an equal number if not more bad days that you don’t see. You don’t see me struggle to move from my bed to the restroom without assistance. You don’t see the accessible devices in my shower, like a shower chair, that I use because I can’t stand for longer than a few minutes at a time some days. You don’t see me wince in pain because every joint hurts, and my pain medication hasn’t really been effective that day. You don’t see the three days I spend in bed unable to move from a migraine, unable to find relief of any kind. You don’t see me throwing up from the weekly low dose chemotherapy injections meant to help me “live”. Unfortunately, for some reason you choose not to see the struggle that is my new life that I fight every day with everything inside me.
I understand it’s more comfortable to relate to the “good days” me only, but I can tell you now overlooking my struggles or dismissing the “bad days” me is a loss for both of us. I’ve learned so much in this time about life and chronic illness, and I would love to share that with you. I would love to broaden your perspective so your impact on the world is a positive one. So that maybe you don’t accidently say something hurtful to a chronically ill person in the future that maybe you didn’t even realize was wrong to start with. That dialogue would be great. I hope to have that with you one day.
As for me, I’m adjusting. I think I’ll always be adjusting to this new life in front of me. I live one day at a time, not planning too far into the future, but being grateful for the present. I definitely have down days, but I also have an amazing support team to remind me I can indeed survive…whatever this illness, or the world throws my way.