To My Partner: How You Can Help With the Fears I Face Because of Chronic Illness

Chronic illness comes in many forms and, equally so, the way spoonies deal with it too. But, I’ve got some tips that I hope will really help you understand how it feels so that you can be the best, supportive partner for me.

Love a spoonie the way they are and they’ll cherish you for life.

Dear Soul Mate, Love Bug, Honey and Babe,

Here’s my letter to you. To understand what I think about, how I feel and how you can help. Our fears are often deep, hard to talk about and depressing.

But, here it goes, because I notice you’re confused at how I feel different every hour, frustrated with not knowing how to help all the time, and yet still there helping me feel relatively normal.

So, what do I fear the most?

I Fear Loss

Spoonies are likely to lose a lot in life, or at least feel like it. Some days, I lose my mind! I’m sure you’ve witnessed it.

If you’re still there, you’re a trooper with me and I appreciate you! I might not tell you enough, but please know that I see you trying to help, trying to relate, trying to figure out if I want help and trying your best to help me through even if I’m crabby, stubborn and sad.

Losing independence haunts me. Who wants to be a burden in their 20s or 30s? No one pictures that happening to them and that’s how chronic disease hits, randomly without notice. Such is life and I’m trying to stay positive, but some days, I don’t win. I get demolished by negative thoughts sometimes and it can be a scary, depressing place.

So, I give myself pep talks even with the smallest tasks. Something little to you takes a toll on me. Pretend you ran five miles for the first time ever and couldn’t stop until you hit that fifth mile. Then, run 10 more miles. That’s a fraction of the exhaustion spoonies experience on a daily basis.

My pep talks include: getting out of bed, taking a shower and, if I’m feeling pretty good, I’ll talk myself into putting on eyeliner and mascara! I love that you don’t view me as a burden, but as someone you love unconditionally. You’re the one who sees all faces I wear throughout the day that family and friends don’t get to see and you’re still here! Now that’s love.

So, what am I saying here?!

Accept me at my best, support me at my worst, and just be there, even in silence. Even if I don’t say it, I need you and I want you to need me too.

Being there could mean: offering to cook dinner, bring my meds, heating pad or whatever is my go-to for what we’re complaining about at that moment.

How You Can Help

1. Accept me at my best, support me at my worst, and just be there, even in silence.
2. Don’t view me as a burden, but as someone you love unconditionally.
3. Be there for me: Offer to cook dinner, bring my meds, fill my teacup, bring my heating pad or whatever is my go-to for what I’m complaining about in that moment.

I’m Scared Of Disappointing You and Myself

Maybe we talk about wanting a family or joke about our future, but I’m scared of enduring the journey getting there. I’m scared of losing our baby before we get far enough to see it take its first breath.

What if we get there and I can’t give our child the attention it needs because I’m constantly exhausted or sick? I’m scared of missing out on special moments that moms and dads get to see with their children. I want my child to have a great life, but I’m scared of letting them down.

I’m scared of losing you. I don’t want to push you away, but sometimes it may seem like I am. I’m still learning about my body and these symptoms keep changing. It takes time and I’m happy you’re here with me through this journey.

I hope I can do the same with you. I know I have it worse than most, but it’s OK to complain that you’re tired or don’t feel well sometimes. I’d like to be there for you too.

It may be a little different, but I’m here, with you. Better yet, let’s lie in bed and be tired together. Let’s create moments that open doors to a deeper dimension than ever before.

I’ll admit this once, I’m insecure. I mean, everyone is insecure, but dealing with a chronically ill body takes a toll on my self-esteem sometimes.

I feel like I look lazy to you because you see a healthy person lying in bed who is complaining of being exhausted and we didn’t do anything in your eyes to get there. Trust me, the last way I’d like to live is every other day in bed, streaming our shows or sleeping all day to wake up tired and in pain. It gets old quickly.

Here’s some more honesty, my complaint could change five times in a day, if you haven’t already noticed.

I’m annoyed and frustrated at my body, so I understand if you’re confused about it too. Can we laugh about it a little? I could use a laugh, my darling, especially with you.

I may be losing my job or by the time you read this I’m in that boat already.

Now, if I can remember correctly (some days it’s hard, be patient), I’m pretty sure I’m not near that special retirement age yet. I have goals and ambitions, but my 90-year-old body is stuck in this young, sassy, beautiful figure (wink, wink).

I’m trying to be productive and I’m trying to set new, achievable goals. Stick with me on this journey, I’m determined to surprise us both! 

How You Can Help

1. Reassure me that you’re in it for the long haul.
2. It’s OK to be sick and complain if you don’t feel well. We can feel like sh*t together. Let’s create moments that open doors to a deeper dimension than ever before.
3. Be patient with my fuzzy memory, don’t make fun of me so much when I can’t clearly remember what we talked about, it’s embarrassing enough.
4. I’m trying to be productive and I’m trying to set new, achievable goals. Stick with me on this journey, I’m determined to surprise us both!

Balance in Communication

Now, here’s the opposite request. Sometimes, I don’t want to talk to you… I’m not trying to be sassy right now – well, not too sassy.

It takes too much mental and physical effort to talk or kiss sometimes. My patience wears thin. So, it’s best if I just keep to myself right now. Remember the spoon theory I told you I read about?

Basically, I have a limited amount of spoons every day that equals energy needed to complete a task. Each task we complete could take one or even five away. For example, getting out of bed: one spoon, brushing my teeth: one spoon, taking a shower and getting ready: three spoons, now I have to do laundry and we’re already down to six spoons left for the entire day and it’s not even 12 p.m.!

I have to work today, there go five more spoons. I’m trying to save the last spoon for you when I get home. Otherwise, I have to over push myself and tomorrow, I’ll be in bed longer so I don’t cause a flare-up. Do you see how normal tasks for you take a toll on me?

When you get frustrated, try to remember I’m doing my best and my best will depend on how I’m feeling.

Let’s talk about boundaries. I think we should set boundaries and modify them as we grow. If I’m snapping at you and you’re snapping at me, we’re going to have a hard time making it out alive.

Why don’t we talk more about how you like to feel loved, how you’d like your space and keep open communication.

Self-care should be your priority too! I worry about you. You’re a caregiver and I don’t want you to have caregiver fatigue. Please find a healthy outlet and share with me what you like about it if you’d like.

How You Can Help

1. Listen to how I describe what I’m going through.
2. Accept how I want to be helped even when I say I want to be left alone, remember I don’t love you any less.
3. Self-care is your priority too! Please find a healthy outlet and don’t be shy to tell me your needs too.
4. Don’t get upset when I have an attitude (this is situational), it’s hard to be bubbly and happy all day when you’re in pain. Of course, If I’m disrespectful, let’s talk about it… later.
5. When you get frustrated, try to remember I’m doing my best and my best will depend on how I’m feeling.
6. Remind me how much you love me and that I’m worth everything, especially on my worst days.

I’m amazed by you.

You’ve consciously decided, “Hey, I’m going to love you, I’m going to try to understand you, and I’m not going to judge you.”

I appreciate you, I care about you, and I love you more than you’ll ever know.

Love,

Your spoonie