Patient Letter to Lupus Caregivers
To the ones supporting a loved one with lupus:
None of my family or friends have lupus. Many of them never had to cross paths with chronic illness until I was diagnosed 5 short years ago. It has been a huge learning curve for all of us. Lupus will present itself in many ways and everyone involved will go through a rollercoaster of emotions. There will be moments of uncertainty, defeat, and believe it or not, many victories. It starts to become very hard to distinguish when to be excited about the good news and when to be worried about the bad ones.
Sometimes I find myself getting frustrated with the ones around me because they can’t see that I’m in severe pain, or I’m so fatigued I can barely function, or that I am STILL thinking about the bad test results I got a week ago. The things I feel aren’t even present in their minds, but how can I blame them for that? I often don’t voice my frustration because it is extremely temporary - and if I do, I feel Instant regret. I realize that it is a state of despondency that I naturally experience when I’m feeling poorly. And I fall aggressively into guilt. I don’t want to feel that way about the people I know love and care about me.
I have watched family and friends fight medical battles, so I guess you can say I’ve been on both sides of the fence. And if there’s one thing I’ve learned, it’s that they both are EQUALLY as difficult. The stress, the worry, the sleepless nights and tears I secretly dropped and wiped away before the one suffering saw, drained me unconsciously. The feelings of watching someone I loved go through something that I couldn’t prevent or make better started to consume me.
I have such sympathy for the people who support me, maybe similar to the sympathy they have for me when I’m suffering. I’m not sure if there is even a word to express the degree of gratitude I have for each one of them.
I got lucky to have a boyfriend who makes me feel beautiful and powerful even on my worst days. So many people do not understand the battles couples face when no one is around. Let’s be honest, there are times when I’m in so much pain I couldn’t exercise if I wanted to. And sometimes on top of that, I’m taking loads of medications with weight gain, hair loss and mood swings as side effects. It naturally casts an insecurity upon me and it is so overwhelming. He never judges me and most importantly he makes me feel like the most beautiful girl in the room- no matter the time or place. He shows me the most organic form of love. He is my light in a room that sometimes feels so dark. My breath of fresh air when I feel like I’m drowning. The most selfless person I have ever had the pleasure of knowing.
My best friend has been there through it ALL. I don’t think there’s a person out there who knows me better than her. I feel like when I hurt, she hurts and vice versa. She motivates me to keep going. She’s strong for me when I feel like I can’t carry the weight myself. A piece of me would be missing without her.
And as for my parents and the rest of my family, I wouldn’t be the woman I am today without them. Everything I am, they’ve made me to be. My mom and dad have sat through hours and hours of doctors’ appointments, spent days and nights at the ER and eagerly awaited while I was in surgeries. Unconditional love is such a powerful thing and sometimes goes unrecognized. My heart breaks when I think about how they may feel sometimes. I live the amazing life I do, because of them.
I hope this intensifies the importance of the position that you are in as a mother, father, boyfriend, et cetera of someone suffering with lupus, or from any chronic illness. As much as I wish I could enlighten you with some magic answer on what exactly to do - I can’t.
Just know, it’s okay to be angry. It’s okay to have moments of weakness- trust me we will too. But there isn’t a day that goes by that we aren’t thankful for you. We understand it’s hard to be in your position. We understand you are worried just like we are. Be open and talk about it. Share what you are feeling. It’s nice to know we aren’t going through this alone.
Lupus may be the focal point in your life at times. It may seem as though it steals moments, keeps you and your loved ones from doing things you want to do, or puts stress onto your relationshisp. What is most important is to not let it consume you. Be grateful during the good days and live the life you were born to live, lupus and all. Yeah, you carry a little more weight than others at times - be proud of that!
I would never wish lupus, or any chronic illness, upon anyone or their family members. But, I think we should shed light on the situation, and be thankful for the position we are in. Some people never get to experience the degree of love and appreciation that we do. Experiences like these will shape our rare disposition.
To the ones diagnosed with lupus, your appreciation and love for life is going to grow everyday. You will learn to appreciate the people and things you never did before.
And to the caregivers, life wouldn’t be the same without you to support us. You are the most important people in our lives.
Like I said, it’s going to be a rollercoaster of emotions - I hope you’re strapped in.