What's in Your Spoon?: Finding Joy Despite Living With Chronic Illness
*edited from original post in 2015
Since my fibromyalgia diagnosis in 2006, I’ve learned a lot about how to care for myself physically, mentally, and spiritually. But, in times of flare-up, it can still be a fierce battle. The enemy wants to remind me of all the things I could be doing if I wasn’t sick, and tempt me to compare myself to others. In times of health, I struggle to not overdo it to compensate for the time when I wasn’t "enough.”
If you have any type of chronic illness, you’ve probably read “The Spoon Theory,” by Christine Miserandino, a lupus sufferer. It’s become hugely popular, and it’s no wonder it resonates with so many- it provides a very practical picture of what it’s like to have to balance your life in such a way that you have to prioritize not just your time, but your energy. You only have so much you can give each day- a certain number of spoons- and when they’re gone, they’re gone. I see some who aren’t using all their spoons and yet are merely “getting by,” often with an Eeyore attitude, and others who don’t seem to have enough spoons, yet thrive despite their illness. I wonder if the difference is what’s IN their spoons?
I talked with Chrissy and Eva, both fibromyalgia sufferers, and Jenny, who has rheumatoid arthritis, about how they find joy despite living with chronic pain and illness. One thing these ladies have in common is while they are real about their illness, they don’t let it limit them, and have full, vibrant lives.
Do you ever feel angry with God about your illness?
Chrissy: I often get mad when I am in pain, but never at God. I'm not really sure why I am able to understand this, but I really do believe that His ways are greater than mine. He doesn't owe me an explanation. If anything He has taught me that I can trust him and that I am never alone. God is the only one I can truly rely on.
Eva: I’m not ever angry at God, but sometimes I question and am unhappy about my circumstances. I don’t ask, “Why me?” but “Why NOT me?” Everyone suffers- their suffering looks different, but it’s all suffering. Our pain has a purpose if we submit it to God. I don’t have to understand it. What will you do with your pain? It’s your choice- a choice of your heart. I choose to let my pain be a catalyst to draw me closer to the Father. We call our suffering bad, but what if it could be a gift from God to bring good fruit?
Jenny: I see my illness as an assignment from God to overcome, and to let other people see me overcoming. I want them to see His spirit in me, and say, “Wow, what’s inside of her that makes her that way despite all her struggles?”
How do you reconcile the fact that you haven’t been healed?
Chrissy: Maybe it's because I have felt physical discomfort pretty much my whole life, but if I am really honest, there has always been a part of me that hesitates to believe that God will heal me. Not that I don't believe he can, I just don't think he will. I'm okay with it because the Bible tells me that suffering is normal and it's to be expected.
Eva: I reject people who tell me I don’t have enough faith. God gives you the measure of faith you need for what you’re going through. Praying constantly for healing can actually discourage me and cause me to focus on my pain and why I’m not being healed. No one but God knows His specific will for my life. I feed my spirit, because THAT is what heals me- maybe not physically, but emotionally when I feel like grieving the loss of the things I can’t do. The enemy wants me to be useless, and dwelling on my pain makes me useless. Instead, I focus on seeking the Healer- I want the Giver, not the gift.
What are some practical things you do to get through hard times of flare-up?
Chrissy: I listen to Christian radio every day. I am constantly educating myself about faith-based emotional health. Lately, I have been focusing a lot on home improvement projects to get my mind off the pain. It makes me feel energized and proud to accomplish little things that add character to my home. My emotional state is a roller-coaster. I have realized how important it is to remember that the ups and downs are seasons and it will not be this bad forever. I rest often and have a nightly glass of red wine!
Eva: I think people need to listen to their body, whether they have a diagnosis or not. God made us to require rest. Give your daily agenda to God, and be flexible. The more you stress, the more your pain increases. I try to take time to pamper myself- my thing is regular massages.
Jenny: I do take medication, and of course I have to deal with side effects. I take Plexus supplements, and go to the doctor about every 4 months when I’m flared up and about every 6 when I’m not. I pick my battles. My bed may not be made, but as long as everyone is fed and homework is done, I’m ok. I hang my supermom cape up when I’m flared up, and am just honest with everyone. Then when I start to feel better I can ease back in.
I know people who use their illness as a crutch. If someone always uses their illness as an excuse for why they can’t do something, they aren’t believable. If people see me working hard when I DO feel good, they believe me when I don’t feel good. I don’t always tell everyone how miserable I feel, because then they respect it when I say I don’t feel well. I’m going to do what I can do while I can do it, and then not allow myself to have guilt when I can’t. I would tell others who struggle with illness, “Suck it up, buttercup! You can own this thing, or you can crawl up in a ball and let life pass you by!”
Krista: I had to add a few here! I love my heating pad and hot epsom salt baths, and I also take medication and supplements. I drink Kombucha, and more so if I feel a flare coming on because in addition to helping my digestion, it gives me bursts of energy. A biggie for me is moderate, regular exercise. When I’m flared I can do almost nothing, but I work myself gradually into small bouts of activity around the house, and then into walking and yoga. When I’m doing well, I make time daily for exercise- normally on an elliptical machine, but sometimes walks or activities with my kids- because it really helps keep the flares down. I don’t sit for long periods at a time without getting up and walking around, and I stretch often. Massage therapy is really helpful for me, but it’s pricey, so I have a small heated massager with roller balls, and save professional massages for when I’m at my worst.
And the big question...How do you find real inner joy despite your illness?
Chrissy: Over and over I hear Jesus say, "Just trust me." I often think, "All things!" meaning I can do ALL THINGS through Christ who strengthens me (Philippians 4:13). God gave me a vision of Jesus sitting Indian-style on my bedroom floor while I was in bed having one of the worst days. He didn't take it away, but He was there enduring everything with me. I am never alone! I am also a member of Facebook support groups where I can be free to vent exactly what I am thinking and feeling and nobody judges me. I am met with understanding and support every time.
Eva: I say cry when you need to, but then move on. Listen to worship music that ministers to you. Research what Jesus says about healing of mind and spirit. Encourage yourself in the Lord. Praise Him even when you don’t feel good. Don’t let a bitter root of resentment grow up in you. Ask God how He can use your pain as a ministry. We can’t depend on yesterday’s grace or tomorrow’s grace- I need to know, what does His word tell me today?
I think about my yellow lab when he sees me cooking- he is fully alert, expecting me to drop something yummy for him. I want to be like that with God- fully alert, expecting His blessing. I don’t let my illness define me. I remember and rely on God’s faithfulness in weakness- His grace is sufficient. He gives me strength for the moment, and grace for the journey. I like Proverbs 4:20-23- it tells us to let God’s word penetrate our heart because it brings like and healing, and to guard our heart. And Psalm 34:8- "Taste and see that the Lord is good."
Jenny: I associate joy with laughter, and I look for opportunities to laugh. When I was diagnosed, social media was just emerging onto the scene, so I reached out to people I had known in the past who had always made me laugh, like my sorority sisters. I have supportive friends who try to find activities we can do together that they know I can participate in.
I think you have to know who you are outside of being a wife and mother. If your whole identity is in those roles, when I trial happens you don’t know how to deal with it because you don’t remember who you were before and what else brought you joy. You feel like you’re being selfish when you reach for what makes happy. The things I create give me joy- crafts, furniture, working in people’s homes. Cooking gives me joy.
Girlfriend time because is a renewal for me. I don’t hang out with a lot of other sick people, because in becomes like one big pity party- a grief cycle. Instead, I surround myself with cheerleaders and helpers. I don’t want a pity basket- I want a basket of joy.
Jenny hits the nail on the head- we can have a spoonful of pity, depression, whining, and complaining, or we can choose to have a spoonful of faith, of confidence, of praise, of optimism, of joy. It’s not always easy to do- it takes intentional effort. But personally, I would rather put on my shoes, drive to the store and wait in line for a spoonful of ice cream than to have the convenient spoonful of cough syrup. (Is Mary Poppins singing “Spoonful of Sugar” in your head yet?)
Look for more great thoughts from these ladies in the next article- "What I Wish I Could Tell My Friends About Life With Chronic Illness"