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A Letter To My Spoonie: I See Your Struggle and I’m By Your Side
In response to the blog, A Letter To My Partner: How You Can Help With the Fears I Face Because of Chronic Illness
My love, my sweet pea, my snuggle bug, my babe,
I’m thankful for your trust in opening your heart and soul to me. I thought I’ve seen every side of you, but you’ve amazed me yet again with your strong spirit to not only share your fears with me but with the world in hopes of helping others along the way.
While you were cute, sassy, and brutally honest, I saw raw emotions that built a stronger bond which no one will ever break.
I want to be the one that takes care of you and provide for you when you are not well.
You know what? I don’t care if you’re not well for months on end, I could never picture my life without you even when you’re being moody, sassy, and when YOU think you’re “ugly” on your sick days.
I’m going to get very real with you too. You never believe me when I say how beautiful you are.
Your beauty isn’t measured by how many scars you’ve covered up, but by uncovering the scars of your journey with chronic illness.
Your struggles have shaped you into who you are today and I’m proud to be next to you whether you’re laying in bed suffering, smiling to hide the pain when we’re out in public, and even smiling to me when we both know you can barely make it through the day.
I don’t want to ask too much of you, but there are a few things I’d like to talk about as well.
1.) You’re Confusing and I’m Trying
I’ll admit, it’s hard sometimes to understand how you can go from smiling, bubbly, and outgoing one day to laying in bed all day the next.
Sometimes it’s hours into the morning and you went from being very hungry, “give me food and I’ll love you” to “I can’t eat right now and I need an extra hour to myself”.
You are clearly suffering and I can only imagine how your body must feel going through fast-paced strides of highs and shooting down to the lowest of lows all in one day. It sounds exhausting and I’m sure your body and mind are tired.
I see you. I reflect on how it must affect you. I see the guilt in your eyes when you don’t commit to plans with me.
Yes, it sucks sometimes when you can’t do activities that I want to do, but I know you’re working on lifestyle changes for yourself and for me. I won’t hold it against you and if I ever seem like I do, say something because that’s not my intention.
Please reflect on how far you’ve come already. Don’t focus on what you can’t do at that moment, but how you got to where you are today.
If it wasn’t for your stubbornness, you wouldn’t have fought so hard to continue what you can do.
You’ve modified how you can complete tasks and you take proactive steps to continue getting closer to the life you WANT to live.
Now, when you’re having a bad day(s), it doesn’t mean you’ve lost the war. To me, it seems as though you’re taking a break to win that war. One day, I hope it’s not viewed as a war, but as a bad day which we all have.
Seeing you in bed-ridding pain because you decided to live fiercely by drinking a few sips of wine or eating certain foods that I and anyone else would take for granted causes an overwhelming feeling of anxiousness in the pit of my stomach.
I feel helpless that I can’t take your pain away. I feel I’ve let you down from protecting you from the wine and food devil.
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What I’m trying to realize is that it’s okay to be confused because you are too at times.
I know I can’t help you in every way and I need to learn to be okay with that.
After reading your letter I know that you see all that I do and even if I can’t do something, you’re okay with me just being there. I hear you and that is a relief.
You’re the first person to truly warm my heart and allow me to open it up as you’re so vulnerable and open with me.
It’s frustrating, confusing, and sometimes an uphill battle, but I want to fight by your side.
2.) I Will Be There
Thank you for telling and showing you appreciate me.
I do get frustrated because if doctors can’t help you live a normal life, how can I?! Plus, that sassy mouth of yours, I wouldn’t have it any other way.
Well, you could tone it down a notch. Nonetheless, I love you for you!
I’m going to be honest as well.
I fear I’ll lose you in many ways and I try not to think about it ever. So, let’s focus on how to continually evolve together and build your health to a manageable status so that I never have to look at pictures to see your face, but admire your beauty as you sit next to me.
I support you. I see you buying so many products that everyone says helps them. I want you to succeed in your wellness journey and if you think it will help, I will never deny support.
You know your body more than anyone, I’d say at this point I’m a close second in line (wink).
I will give you all I can, please don’t ever leave me if I fail sometimes.
I’m working hard to support you in the future, don’t feel guilty for that either.
It’d be naive of me to not prepare for the day you can’t work at all. Don’t feel guilty if you lose your independence, I’ll make sure you still have chores to do around the house (kidding…).
Alright, here’s the romantic side of me, so take me seriously. I want our bond to be welded by the lows of your chronic illness as it swings us into the to the highs of life. We will have many highs in life, you just have to keep the positive momentum going and you won’t be alone doing so.
3.) Caregiver Fatigue
I’d rather spend a “bad day” with you then a “great day” with anyone else. Cliche, I know. But, I never pictured myself to ever say any of those wall print sayings. But, I guess when you experience love, when you see all the sides of someone’s life, how can you not be infatuated with their ability to carry chronic illness so well?! So, you’re stuck with me.
I’m never leaving you. You give me more purpose, you inspire me, and you’ve shown me what most strive to be in life.
Caregiver fatigue is kind of a new term for me. It helps me understand what I fear and what I feel sometimes. Thank you for recognizing that I still need to hold onto who I am without pushing you away.
I will find an outlet and share with you my hobbies.
It’s so important that you find something that makes you happy and makes you feel like you have a purpose too.
Find your passion, tackle it head on and don’t let your chronic illness hold you back.
Modify how you do something, so you can still feel satisfaction in your ability to be independent.
Also, can we not call me a caregiver, it’s not a cool term for either of us and it’s doesn’t accurately describe you. You’ve got too much going for you and you always will.
Caregiver implies you’ve lost your independence and it denotes my role in your life. We’re better than that.
Batman. That works. But, then I’ve just outed who I’ve been this entire time!
What about “The Supportive Partner“? That works. I’ve got big things in store for us. stay tuned.
4.) How to Show Appreciation/Love
I remember the book you told me about, ‘ The 5 Languages of Love’ and how everyone shows and receives love differently. I won’t take to heart those times that you don’t want to be near me because I understand that pain and suffering whether it’s mental or physical is something that pulls you into your cocoon of blankets.
But, don’t roll your eyes when I check on you because I’ll never stop.
The way I show love is how I want to receive it, so take notes, my lady.
I’m no batman, or am I? I mean you’ve never seen Batman and me in the same room…
Anyways, sometimes I’m too distracted by everything else going on to recognize the details.
I feel appreciated with verbal affirmations and nice gestures. I may be a little slow at recognizing it, so don’t be afraid to say I did “x” for you today just because I appreciate all you do.
I feel I’m a little simple when it comes to showing love and appreciation, so you’ve lucked out.
I will love you, protect you, support you, and I will never tell you if I’m Batman or not. You’ll just have to wonder for the rest of our lives together. Don’t go in the basement in that secret “drawer” though.
Your Best Friend.
The Supportive Partner