Last weekend, I woke up feeling like I’d been hit by a truck. Not the first time I’ve felt that way, since I’ve been living with rheumatoid arthritis (RA) for over 20 years. But after a few weeks of really struggling with it, it got the best of me. When you wake up, ready to face the world and RA throws a wrench in your engine, it’s a real spirit killer. So, I gave up. Done. I was tired of trying and tired of holding on to a hope that never pans out.
I. Gave. Up.
For five minutes.
I ugly cried, sulked and felt incredibly sorry for myself.
Then, I was over it. Surrender really doesn’t look good on me. So, I picked myself up, wiped off the tears and decided to forge on.
You see, every single day, I wake up hopeful. Hopeful that today will be easier than the last. Today, maybe I won’t be in excruciating pain. Today, maybe I can type like a normal person. Today, maybe I won’t drop things randomly when my hands go limp or lose strength. “Tomorrow might be better,” I tell myself as I slide into what should be peaceful slumber, but that doesn’t happen for me like it used to. Every single thing I do is some sort of challenge that I have to overcome.
RA comes with built-in challenges. I don’t think there have been more than a handful of days that I’ve actually felt “good” in 20 years. It’s a vicious disease and a silent one. Unless someone is physically giving you the once over and sees a few swollen fingers or limping there’s nothing to see. It’s internal and it wreaks havoc on your body. RA is a very different animal from osteoarthritis. RA is an autoimmune disease and affects much more than just your joints. It is systemic and, in addition to joint damage and chronic inflammation, it can cause inflammation in both organs and tissues. There’s no rhyme or reason why one day you’ll feel ok and the next you feel like hell. There is no cure, there is only disease management. And the journey to finding the right medical cocktail, diet and exercise combo is a daily commitment.
I guess the whole point of me even writing this is to give some insight to those who don’t understand this disease – or any silent disease for that matter. People like me smile, put on a great front and never really let on to just how much we have to endure. Complaining doesn’t serve any purpose for improvement and no one really wants to hear about your struggles anyway. They really don’t. And I don’t blame them. I don’t want to hear anyone constantly complaining, either. That kind of negative energy is bad, bad, bad. But, I digress. Point is, it’s okay to feel the way we do and it’s okay to communicate how we are feeling to others. You can’t handle everything by yourself 100% of the time.
Having the right support system is crucial to our state of mind. Reaching out to a loved one or friend or even a higher power is the one thing that can brighten a particularly awful day or moment of resign. Support, for me, is as important as medication, because it feeds my soul and gives me that human connection of understanding and love. It lets me know I’m not alone.
Dealing with any chronic disease is bound to be an emotional roller coaster. That’s just a part of life that you get used to. But, the human spirit is quite amazing. We do things we don’t want to because they’re necessary. We fight, even when we want to wave the white flag. We cry through the bad times and let it all out only to power through again to another build up and eventual release. It’s a never ending cycle. But having people by your side helping you push through is incredibly important.
I am so fortunate. I have an AMAZING partner – my much better half - that helps me beyond all measure. She’s quick to recognize a need, even when I don’t ask. But, she doesn’t jump up to assist me every time I have an issue. She lets me work through things I can and helps with things I can’t. If she ever gets tired of helping, you’d never know it. She never complains and is always encouraging, even offering up some tough love when I need it the most. She’s the world’s greatest! But, I’m a little biased….
The moral of the story is, if you are dealing with something that seems way bigger than you at times, find someone you trust and reach out to them for support. No one can really know your struggles unless you tell them. And I know you’re tough and you’ve got this, but every now and again it’s nice to have someone to lean on. We are all connected. What are we if we can’t be here for each other when we need it the most?
And if you’re reading this as the support person for someone who is struggling with a silent, chronic disease, thank you. Thank you for being their “person” and for wanting to understand just how much we shoulder every day.
Be good to each other. We’re all we’ve got.