coping with invisible illness

Land of the Broken

I could wait until I’m in better spirits or able to sugar-coat this post, but I decided raw is where it’s going to be for this. Too much filtering leads to people getting the wrong idea and right now, we could use a little less of that in our lives.

Fighting disease is brutal. I can’t paint it any other way.

This journey season broken life Trevin and I have been navigating these last few years has been painful, lonely, heartbreaking, and vastly misunderstood.

Many friendships have faded, or in some cases completely vanished. Some family have largely stepped out of the picture, while others have stepped up (shout out to our parents).

We’ve grieved many things the last few years, and this feeling of being forgotten is one of them.

 

The life I used to live and the life Trevin and I shared has changed so much I wouldn’t even know where to begin in describing it all. Not now, at least.

And this year….this has been the year with the most of everything.

The most ER/hospital visits, middle of the night scares (the ones that don’t end up in the hospital, but are only slightly less terrifying), loss, grief, sadness, tests, pain and so much more.

A few weeks ago we ended up in the hospital for our second life-threatening cardiac event. It’s not the first or the second, or even the third time I’ve literally tasted death – when I’ve had this gut-wrenching awareness that things were so.not.right in my body.

I remember looking at Trevin in the moments before the ambulance arrived, soaking in every inch of his face, convinced it was the last time I would see him. The pain and weight in my chest was unbearable.

How do you translate the kind of pain that leaves you without feeling? I guess it’s as simple as you can no longer “feel” the pain because it’s overtaken your body, leaving you in and out of consciousness.

The most frustrating part of it? Lyme has so wrecked my body that somehow I can feel like I’m dying, but many of my vitals will check out normal. Which leads to open ended questions, puzzled doctors, and repeat hospital visits. If I never had to be wheeled through hospital doors again…

The overwhelming weight of this year has felt like too much – no, it has been more than we could bear.

And the phrase that’s been passed to us more times than I care to admit? The whole “God doesn’t give you more than you can handle” line – yeah, that one. It’s entirely unhelpful and I truly believe it’s a misrepresentation of the passage the phrase was derived from. (<—click there to read the passage for yourself.)

God didn’t give me this disease, for one. I don’t believe that. It’s not in his nature and when you say those words, that’s the message you’re sending. When I read the passage, I hear that God isn’t going to leave us in the midst of being tempted towards evil things/actions without giving us a way out.

Trevin and I aren’t feeling tempted to do anything immoral through our pain, we’re simply hurting. We’re desperate for comfort, for care, for healing. We know God can handle the rawness of our emotions and depth of our need.

I’ve been wrestling with this phrase for some time.

I’ve talked with my counselor, trusted friends and read through articles by others written on this same subject. What I’ve come to understand is this: that in our human condition, we weren’t created to face the weight of grief, loss, pain, disease, heartache.

We were designed to co-exist with God in this beautiful world, experiencing a life full of harmony, love, peace, redemption and community.

We weren’t built to handle every single awful thing life throws at us.

Yes, our bodies endure tremendous pain and it’s amazing how much strength the human body and spirit can manage. But under the weight of so much hardship at once – the grief, sickness, heartache – our bodies and souls struggle because it becomes far more than we can handle.

So, I vote we lose the phrase and speak more truth, like how God’s heart hurts with the hurting and sick, breaks with the broken and grieving, and comforts those who are forgotten and lonely.

navigating loss in disease

When we feel overwhelmed with the load of the hard in life, that’s when we, as a community – be it family, friends, neighbors, the church – should be entering the picture.

It’s an important part of how we heal and cope with the heavy challenges we face. We lean on God and we lean on each other.

If you’re struggling with finances, someone steps in to buy you groceries. After you’ve had a baby your families and friends set up a schedule to bring meals. When a relative passes away, you’re sent flowers, condolences and offered a listening ear.

Yet, in chronic illness a different scenario usually plays out.

In the beginning, you share the struggle and your needs and people try to find their outlet to support you. The first few weeks after your health takes its first drastic turn, people notice you aren’t showing up.

They may offer a meal or a visit, or even generously help in giving toward the enormous cost of continuing treatment. (We’ve been exceptionally blessed in the way of generosity for my treatment this past year – you can read our first-year treatment fundraiser story here).

Over the weeks, months, and years, things change. What happens when you’re too sick, too tired, and too worn to “rally the troops” for yourself is that you inevitably begin to fall through the cracks.

And that’s not just our story, but that of so many others facing debilitating illness. While facing a load that is too heavy to bear alone, you are pressed under the weight because you simply.can’t.hold.it. on your own.

Life with chronic illness, disease, mental illness – it’s so gravely misunderstood and overlooked. Society just doesn’t get it.

The advice and critique regarding treatment that is given in place of care is often hurtful and inappropriate. The blank stares and quick changes of subject because people aren’t willing to listen? It’s heavy to experience on top of what you’re already suffering through.

If I had a dollar for every time someone happily told me something along the lines of “You look good! So glad you’re feeling better!” I’d be buying a fabulous meal for us tonight. And cry through it when I remembered how we paid for it…let’s just say emotions are riiiiggghhht under the surface over here these days.

There’s an ignorance that is potent and saddening, and it’s causing far too many people and churches to miss the mark and leave a hurting and grieving community of the chronically ill to fend for themselves.

We didn’t choose this life for ourselves, yet we – and our spouses – are facing it as bravely as we can. Often on our own. Feeling like we have to cover up how bad things really are because people can’t “handle it.”

With our latest hospital visit, we recognized just how broken and worn we are at this point. Trevin wisely took an extended leave of absence from work and we are focusing on rest and taking care of us – emotionally, physically, spiritually – both as individuals and as a couple.

We have had many conversations about who we want to be now and especially in our hopeful transition into wellness. Our hearts want to help others learn how to address the overlooked care of – and ministry for – the chronically ill and others that are long-suffering.

Those in our same boat, facing Lyme or any one of the multitude of other invisible illnesses, shouldn’t have to feel like they are alone. They shouldn’t be forgotten or avoided because it’s uncomfortable for those around them.

For those who feel it’s uncomfortable listening to how heavy and painful this life with illness is, consider how it feels for us to live it every day? Just as much as we can learn and be encouraged by you, you can receive the same from those of us who battle a chronic illness (or the spouse/family member that lives it with them).

I think a lot of people don’t know what to say or do for the chronically ill, and I understand it’s tricky and maybe even awkward for those on the outside. I actually wrote a mini-series over a year ago on caring for the sick that may be helpful to you in learning how to walk with the chronically ill in your life.

But, I would also venture to say that you may need to stop overthinking it: you’re simply caring for a human who is hurting, who may also need tangible help you can offer.

I’m not writing this to point fingers, truly I’m not. It’s probably going to make some people uncomfortable, while offending others, and though I wouldn’t wish to hurt anyone, this needed to be shared.

This post is coming out of years of navigating illness, largely on our own, and I feel that silence will never change the tide. I have many other chronically ill friends who are sitting in this place with me, and this post isn’t just to share Trevin’s and my own struggle – it’s to shed light on their struggle, too.

It’s for the thousands of sick among us who feel they have to hide their disease because society has told them it’s not important enough to care for. Not serious enough of a disease to deem them worthy of assistance.

For the ones who are afraid of sharing honestly how they are doing because they’ve been told to “stop feeling sorry for themselves” or have had their pain and struggle minimized before.

I’m sharing for the ill one who hasn’t been physically able to make it to church, let alone go through an entire service. Then, sadly, because he can’t make it, he’s forgotten.

There are a million different reasons, excuses, whatever you want to call them, for stepping out of a friend or relative’s life when illness strikes. But I promise you this: they’ve never needed you more and you need them and their story just as much.

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22 comments

  1. plus+beauty27 says:

    Oh my Dear Kami, this post has really touched my heart. I am in tears now as I write this. I can relate to this post a lot. I feel lonely most of the time. 🙁 I know it’s hard for most to understand completely what it’s like to live with chronic illness. I had to endure being away from family and friends for 2 years while living in Vegas and feeling totally isolated. Our friendship has meant so much to me and I feel so lucky to have you as a friend. Know that even though I’m far away that I’m always here for you. I always keep you in my prayers Dear Kami. I wish we lived closer! Having you as my friend as someone who knows what it’s like to have chronic illness, I know that I’m really not alone. I love you girl! <3 xoxoxo

  2. Pingback: Unrefined Hope
    • Kami says:

      Hi Clodagh. Thank you so much for the words of encouragement. It feels a part of my purpose, to raise awareness and be a voice for those who need to be heard. Happy it could connect with you in some way!

  3. Janka says:

    Here is a little of Kami insight right back at ya as I read some of your older posts:

    ‘We were designed to co-exist with God in this beautiful world, experiencing a life full of harmony, love, peace, redemption and community.’
    *
    ‘But, I would also venture to say that you may need to stop overthinking it: you’re simply caring for a human who is hurting, who may also need tangible help you can offer.’
    *
    ‘ [It’s] for those [….] who have had their pain and struggle minimized before.’
    *
    Speaks volumes Kami!
    Wondrous insight expressed!
    I have been observing and wondering about these aspects of being too.
    Do you ever wonder how we can ever get assistance in communities which feel so out of depth with sustaining precious life they turn away from it? Is it the stagnant nature of chronic illness which affords them no sense of purpose or direction? Perhaps it becomes glaringly apparent the models of comfort readily accessible for the purposes of illness prove feckless and people find themselves running on helpless and lost without a script? How come the communities don’t invest heavily into finding out how we could transform the weight of pain as a resource technique we could all benefit WILDLY from? I would earnestly wish to be a part of such an endeavor.
    Kiss, Janka

    • Kami says:

      Thank you for sharing your thoughts here, Janka – and for the encouragement and reminder of an older writing of mine. It is a very real struggle, this whole bridging the gap between the sick and the well. From conversations I’ve had with others and what I’ve witnessed in my own life, it seems there are many bridges than need to be built. Others endeavoring to learn, the sick being willing to help offer tangible ideas. Perhaps that idea of involving the community was put on your heart for a reason? Maybe someday you’ll be able to put that plan into motion, even if it’s with the help of many others! <3

      • Janka says:

        Thanks Kami for sharing some more. Grappling for bridging. Deep interconnectedness is surely missing in communities. But interconnectedness I sense is the outcome of a process, much like forgiveness or peace – what does the process involve? The hardest part of communicating for me has actually been having to think for both people, to look for ways to explain things even I don’t get from the depths of pain, grief and frustration without the slightest promise of success. That’s rough alright. As a person who has been in pain for years and shouldn’t have to try harder than the person is much better off that just feels unfair.

        I earnestly hope I will be able to put that vision into motion Kami – and I sense it will be happening by me expressing the going thru transformations of my own.
        Wishing you a nice Sunday honey*

        • Kami says:

          I can relate to a lot of what you shared here, Janka. I definitely agree it’s a process…one that will likely vary from one relationship to the next. There is a lot of pain (on both sides of this). I think the best we can do is try to navigate with honesty, both parties embracing a willingness to listen and learn. There will be some relationships that thrive in that place and others that may slowly fade. We will hold onto the ones that grow stronger in the midst of this fire. sending hugs, lovely. Xo

          • Janka says:

            Hugs right back with you Kami *
            Honest
            Listening
            and
            Transforming
            to the New Hope- and -Scary full
            Amids The Familiar Blazing Fire
            *
            xxx

  4. Diane says:

    The hardest part for me is the seeming idea that if you’re not in the hospital, you’re doing fine. Eight or nine years ago when I was going into the hospital every other month for weeks at a time I would have phone calls and flowers and such. But now that I haven’t had to be hospitalized in 5years everyone seems to assume I’m doing fine. Even when I’ve not been able to get to church for months at a time. And being single and living alone makes it even harder. God has provided everything that I have needed, but the ‘little’ things like the check up phone calls or notes in the mail just letting me know that I’ve not been forgotten are truly missed.

    • Kami says:

      That hits home for me, too, Diane. Those little touches of care mean so much to me too. I am sorry you’ve not had more of those. You deserve to be cared for and remembered. sending gentle hugs your way. Thank you so much for reading and sharing your thoughts here. Xo

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