Fighting With the Chronically Ill

January 13, 2016 | Posted in: Caregivers, Chronic Illness and Diagnosis, Chronic Illness and Pain, Chronic illness and relationships, chronic illness; support

Anita
I remember the first time I heard about chronic illness. Although I didn’t fully understand what chronic illness was or had never even heard the term, my first memory of it was called fibromyalgia and it sunk teeth deep into my mother in law’s body.

She was very energetic. She was accustomed and happy to do everything in and around their home since her husband ran their auto mechanics business. Their two boys worked at the business too, so Anita rarely asked for their help around the house. The story goes that she even put up the privacy fence in their back yard alone. I’m sure she wore her superhero cape for that job. She loved working in her yard, and she was a very active and loving Mimi to our three kids.

She had a doctor whom she loved and trusted. She was faithful to him and believed everything he told her. I don’t remember her ever going to get another doctor’s opinion. It’s not what people did. She was always trying some new medicine that he gave her, and since they didn’t have insurance due to being small business owners, they often took trips across the border to get cheaper versions. She was always trying a new oil or the latest “miracle” cure from the shopping networks. She spent thousands on acupuncture and massages and trying this and trying that. She self-medicated. She also self-diagnosed because her doctor didn’t. She didn’t know any better. No one did. We didn’t know what to do so we helplessly watched as her pain increased, her body broke down and all the meds she took consumed her.

I remember the conversation when she told me she had fibromyalgia. I remember having curious thoughts of what that even was and feeling so bad for her that it was something she was “just going to have to live with.” She would “just live with” fibromyalgia for about ten years. She passed away in September 2012. She was 63. I know that God is sovereign over life and death, but it’s hard to process that she was under a doctor’s care and from the day that the ambulance picked her up because she couldn’t move her legs to the time of her passing was only about one month. Her insides were completely consumed with “fibromyalgia” or what ended up being diagnosed as cancer. Perhaps she had Lyme Disease or other combinations of chronic diseases that we now know of, but there are no answers to my mother in law’s chronic illness. We’ll never know, but we’ll always wonder. What if… What we do know now and what we take comfort in is that she is no longer chronically ill but chronically healed.

Alisa
I met an incredible young woman in 2007. She is a gifted singer/songwriter. We hosted her in our home for a concert she was doing at our church. She sang her show and came back to eat ice cream and bond and immediately became a part of our family. She was sick and didn’t know why.

Alisa had been chronically ill since her childhood, which they would later discover, was from a tick bite. What could have been healed with about a quick round of antibiotics at that time, turned into multiple misdiagnoses, removal of tooth fillings, detox treatments from hell and a host of other treatments.

She was finally diagnosed with Lyme disease and began a course of treatment for it that very few doctors got behind because there are more doctors who work for insurance companies than patients. Sad, but true.

For years, I watched Lyme disease crush the song out of our songbird. I watched a feeding tube replace her vocal cords. I watched cute show dresses be replaced with hospital gowns. I watched the stage lights go dim.

I watched her find love that she at times didn’t think she’d live long enough to find. I watched her get to be a mommy for seven blissful and expectant months to her sweet son, London and then bury him just after his birth due to the effects of her illness.

I’ve watched her fight. (My UnGodly Hour With Lymes)

I’ve watched her fight to let go of things she wanted but couldn’t. I’ve watched her fight to hold on to things she simply had to keep. I’ve watched her fight insurance companies. I’ve watched her fight to sing another song and do another show. I’ve watched her fight to breathe. I’ve watched her fight to live.

And now I’m watching her win!! She inspires me.

I hope you watched the video above from the thick of her battle. After that video, it got worse before it got better. Now I hope you’ll watch this one from a few years later.

She’s still breathing. She’s still singing. And I’m so thankful!

Then I met Stacey – the amazing woman warrior behind this blog. She is fighting for herself and for you in what she is doing here. I have only been able to spend minutes with her in real life, but I am so grateful and humbled to get to be a part of her journey. I am watching her fight just like my friend Alisa did and still does. I hope and pray one day that I get to see her win this battle. I see her writing her heart out. Her words are what initially drew me to her. I quickly realized she’s a giver and an encourager. She grieves over not being able to do what most moms and wives can do. She knows others are out there too, just like her. She wants you to know you’re not alone. And more than not being alone, she’s with you! It is a holy honor to get to call her friend.

I guess you’re probably wondering about the purpose of this post when I’m not even someone who suffers from a chronic illness. I mean I have celiac, which technically is a chronic illness, but it doesn’t compare. Not even close. I can eat right and feel okay. I don’t have 26 bottles of meds and supplements on my kitchen counter. I don’t have a doctor’s appointment every week or multiple times a week. I’ve never had a feeding tube. I don’t have to worry about catching a simple germ from a public place that could send me to the ER.

My mother in law’s illness took her life because nobody knew much then about how to help her save it. When Alisa, and now Stacey, came into my life I know more. We know more. There’s still not much I can do to help due to the miles between us but here’s what I can do:

Ask
A chronically ill person needs so much help and they get tired of asking very quickly. So often, just thinking a thought is arduous. Don’t wait for them to ask you for help. Ask them, “How can I help you?” “Can I take your kiddo to get ice cream?” “Can I do the morning school run for you?” “Can I sit with you while you sleep.” “Can I help you clean out your garden?” “Hey, I’m going to the store can I pick anything up for you?” “What can I do that would be helpful today?” “What delivery restaurant would be good to get you a gift card from?” Please don’t ask if you don’t intend to follow through.

Also, ask about what they’re going through. Be curious. Ask about what they feel. Ask about their treatments. Ask about how this all happened. Ask about their fears and their successes. Be a student. Oh, and don’t ask too much at one time. A little here and there is best. I wish I had asked my mother in law more. I wish I had been involved in her pain in more of a personal way. What sounds like asking to us feels like caring to them.

Don’t Assume
Never assume. A chronically ill person will exhaust herself/himself trying to keep it all together. Make it all happen. And they can’t. But to us, it might look like they can. Don’t assume that just because they’re laughing or out to dinner or have their makeup on that they are doing great. That may simply be their spoon allotment for the day. (Read The Spoon Theory) They may have only gotten one spoon that day and it was to put makeup on. And they may have had to save up five spoons from the rest of the week when you didn’t notice to go out to dinner with their husband. Please don’t assume they’re well just by their outward appearance.

Encourage
“Be kind to yourself today.” “It’s okay for you to be selfish.” “Give yourself grace.” Send cards, send pizza’s (if they can’t eat it their family will), send an “I’m thinking about you and praying for you.” email or text – but only do that if you really are. A chronically ill person (or anyone hurting for that matter) can spot fake motives from a mile away. Send a scripture that you are praying over them today and tell them there’s no need to respond. Here is a list of Encouraging Scriptures. Send them music or anything that is calm or soft and soothing. A 10,000 thread count pillow case (slight exaggeration),
a framed inspirational quote, a journal. Send them something funny. My guess is they have a hard time finding things to laugh about.

Be Tender
I can’t say “me too” because I don’t have a clue what they are experiencing, but I can say “I’m sorry you are hurting.” “I hate that you are having to go through this.” “I want you to be well.” There is zero space in the life of someone who is chronically ill to be judged. Zero. Just don’t even go there. Unless we’ve lived it, we cannot possibly fathom. Do not judge them. My guess is that they are quite proficient at judging themselves. They will say things they don’t mean because their brain is sick too. Listen to them. Blow things off. Be tender. Oh, that we would do this in all of our relationships…

And above all

Pray
Pray scripture over them. Pray Psalm 3 with their name in it! Pray that they would have so may Aaron and Hur’s in their community to help them hold up their arms in the battle (Exodus 17:10-13) And if you can be their Aaron and Hur, do it! Pray fiercely for their healing and comfort and peace for them as they wait for that. Pray some of the scriptures listed in the “Encouragement” section above over them. Insert their names. Go to the Father on their behalf. Cover them when they feel so exposed.
I’ve witnessed three amazing chronic disease fighters, and they have changed me – for the better. They have fought in different ways and are winning in different ways. But the common thread in this for me as that they are all heroes. My heroes. The battle, and it is most definitely a battle, with chronic illness is all consuming. When they’re fighting, it’s an all in fight. For those of us who don’t have to go through it, it’s our time to be selfless. Let’s help them get through it as best we can. No, we can’t do it all. They don’t even expect us to. But we can do something. If we all do something, it will add up to a lot.

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Andrea Stunz is a wife, mom, a mother in law and a ridiculously proud grandmother. Andrea is a Christ-following pilgrim. She loves stories, living them, hearing them, sharing them and capturing them through the camera lens as often as possible. She finds hope for life in Colossians 1:17. You can connect with Andrea on Facebook, Pinterest, Instagram and Twitter and find more of her writings at www.emptyplatefullheart.com.

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7 Comments

  1. Chris Carter
    January 14, 2016

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    Oh my goodness… that video has left me breathless for her breathing. That song, oh how POWERFUL it truly is for us all. What a gift she is. I thank GOD for Alisa. For her incredible light and her message of hope. How can I follow her? How can I share her song, her talent? I must.

    There is just so much in this post- so so much. Chronic illness is such a terribly agonizing and challenging way to live. My heart breaks over your MIL and all she went through, and how I wonder about what ‘could have been’… as I’m sure you do too.

    I’m always both inspired and amazed at those who endure suffering. They are often the strongest, most courageous people I know.

    I’m so blessed for having read this today. THANK YOU!!

  2. brianna
    January 14, 2016

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    Two of my favorites in one place…lovely. 🙂
    Andrea says so well what my heart experiences every time I read your blog Stacey. 🙂 oh how these words go beyond the care of the chronically I’ll…

    Lovely post, Andrea. 🙂

  3. tammy
    January 14, 2016

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    there are no words of my own that i can think of but i had to leave a note to tell you that this post grabbed me and yanked at my heart. thank you

    • Andrea Stunz
      January 14, 2016

      Leave a Reply

      Thank you for taking the time to comment, Tammy. I’m so thankful it touched you.

  4. Sadye Colaizzo
    May 1, 2016

    Leave a Reply

    Great site, there are so many comments on this posts!

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