The Reality of Chronic Illness and Worth

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Chronic illness can be a strange and mysterious thing to most people, but it is isn't as uncommon as you may think. Yet how it affects a person's life, both physically and mentally, is not often talked about (which may be a reason some people struggle finding support from others, and also why they struggle with seeing themselves how Jesus sees them). 

It's hard to talk about my chronic illness. It frustrates me to openly talk about how hard having a chronic illness is for many different reasons).

However, I am continually learning how important it is to talk about our struggles. When we don’t, we not only isolate ourself in our struggle, but we don’t give room for others to love us properly. When we we gloss over our struggles, we don't share the important lessons that we have learned—lessons that could help someone else.  

I have had a chronic illness called Postural Orthostatic Tachycardia Syndrome (POTs) for nearly 4 years. In the last month, my health was the worst it has ever been, and I had some strange new symptoms develop.  

Having a chronic illness is a constant cycle of being healthy and then having flare-ups: I never know when, how long, or how bad a flare-up will be. It’s unpredictable. It’s an emotional and physical roller coaster. It's hard to know what the next day will be like, health or sickness. 

Not many people understand what it is like to live with chronic illness. It is an impossible thing to fully wrap your head around unless you have lived it. Even my husband (who is amazingly understanding, helpful, and supportive), has difficulty fully grasping what it is like, and he sees me deal with it every day. Truthfully, not having people understand it can be an isolating feeling. 

It’s hard to explain to people that you can’t make solid plans, or you have to cancel plans last minute, because your health is so unpredictable. It’s hard to explain to your co-workers (even though you don't owe them an explanation) why you call in sick so much. It’s hard to explain to people that you can’t do the simplest tasks because you don’t even have the mental or physical energy to function, think, smile, or talk. It’s hard admitting how difficult it is for you and for those around you.

There are usually no visible signs of what is going on in your body; many chronic illnesses (POTs included) are labeled as "invisible disabilities." When people can't see your disability they tend to pin your behaviour on laziness, lack of commitment, or the notion that you don't value them or their time. I continually feel like I am exhausting myself trying to explain my illness to people who don't think it's actually "that big of a deal".  

Until I experienced it for myself, I did not understand how complex and strong the systemic undercurrents of ableism are in our society. Even if you do not consciously think you are ableist, you might be. I didn't think I was, until I had a body that didn't work and hated myself for it. 

I then started to realize that many behaviours I have now, due to my my illness, are things that I used to be anywhere from annoyed to angry with in other people. I thought they weren't trying or were being lazy. 

I vividly remember in university when a member in a group project apologized to me for not doing very much on the project. She told me she had recently been diagnosed with fibromyalgia. I felt sympathy for her, but to an extent was annoyed. I thought she should just try harder; I had a lot of things going on in my life too. I didn't truly understand what fibromyalgia was, or how it affected someone.

I now realize how little understanding and compassion I had, and I realize that other people think the same way as I once did toward the girl in my group project, but towards me. There is a subconscious valuing of an able body as more worthy than a disabled one. Only after having a chronic illness for years is this something that I am finally beginning to be able to deconstruct.

I struggled for I long time to find value in myself when I developed my chronic illness. I hated myself and my body because I felt less valuable. I hated that I couldn't simply "push through" or "try harder" to succeed anymore. I hated having to constantly see pity, confusion, or even indifference in peoples faces when I tried to explain my chronic illness.

I now continually have to tell myself that I am not lesser simply because my body does not work as well as others, or as well as it did before.

I often feel, especially when in a flare-up, that I am less valuable than I was when I was healthy. I lived the majority of my life hearing the rhetoric that you have to push through, just toughen up and do it, it’s mind over matter, you are in control of your own success, etc. I feel that if I am not being a productive, successful person, then I am less valuable. If I am not "pushing through" then I am weak, a failure. 

Thankfully, I now know that I am still just as valuable and worthy, even though I am chronically ill. But truthfully it is still something I still struggle to believe when I am having a bad flare-up.

I hate being chronically ill, but I have learned a lot of hard, important, beautiful lessons through my journey with chronic illness. One of the biggest is that my worth does not depend on my productivity, nor on what others think about me from the outside (which to some, may seem obvious). But having the knowledge that you are valuable despite your productivity is different than actually having to live, and purposefully walk, in that truth regularly when you can't be productive.

No matter if you have a physical or mental illness that people can't see and don't understand, know that you are worthy despite your productivity, or what they think. You are strong because you are trying; and sometimes, trying is simply getting out of bed, other times, it is staying in bed because that is what your body needs.

I realize now, looking back, that many of my actions or works of "productivity" before I had POTs were done out of a vain desire to look busy, to appear as if I had my life together. They were empty. They did not come out of a place of fruitfulness or worship.

I no longer have the energy for empty acts of vanity. I now have to be very intentional with where and what I put my energy towards. I have to lean heavily on God's strength to do many things, especially when in a flare.

It is still a struggle to remind myself that just because I don't have the life or ability I used to, I am still valuable. But it has shown me that even if I did have the life and ability I used to, I still could never be enough. We are all striving to be worthy, constantly. But that is something that is only accomplished through the grace of God.

I am forever grateful that I have a more in depth understanding of the depth and truth of grace. I am grateful that I had no option but to fully surrender to God. I am beyond joyful that I have gotten to understand that God loves me and sees worth in me despite what I can "do" for him. Jesus has freed us from the need to strive; he has freed us from the burden having to earn our way; he has made us worthy through him.

"...by the power of God, who saved us and called us to a holy calling, not because of our works but because his own purpose and grace, which he gave us in Christ Jesus before the ages began." 2 Timothy 1:8-9

I am thankful that despite how awful having chronic illness is; despite having days and weeks where I can do nothing but lay in bed and cry; despite feeling useless at times, I am thankful that I have felt suffering so that I can truly know joy in Christ.

"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy spirits who has been given to us."  Romans 5:1-5

~Sonja 

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Guide

Sonja, thank you so much for sharing this candid and articulate expression about living with a chronic illness. In a society that measures one's worth by their productivity, I appreciate the implicit challenge you give for each of us to measure our own worth and the worth of others by another measure - our value in God's eyes. If every one of us believers could live that way each day, the ableism that is so prevalent among us and within us would begin to wither away, replaced by delight in and love for every image-bearer of God. 

Community Builder

Thank you for this wonderful reply! I definitely agree, and I pray that each of us will be able to find our worth through God, and not the world. 

Participant

Sonja,  your post articulates not just the physical but also the mental/emotional/spiritual struggle for those of us living with a chronic illness.  I have ulcerative colitis and understand this struggle.  As a disability advocate, I would like to use excerpts from your article in our church newsletter...may I have your permission to edit and print it with full credit to you?

Community Builder

Lynn, I am so grateful that my post articulated that to you. As I'm sure you know, it can be hard to put chronic illness into words. And yes, that would be my honor. I would be delighted for you to share excerpts in your church newsletter. Praying God can work through my words. 

Participant

Thank you for graciously allowing me to share this with my church...I really appreciate it, Sonja!

Thank-you for your words Sonja.

You have done a good job of expressing the difficulties of this struggle yet you are not sounding angry or whining.
I whine sometimes and I have been angry about my own chronic illness and struggles.

All you have said it true.
I too dislike that I am unpredictable. I sometimes cannot carry out commitments. I have invisible pain and none functioning that only those who know me very well can see.
I too am led to a much deeper place with God because of the suffering.  This is a huge Gift.
I am grateful that He uses me to encourage others .
Currently I am able to work 3 days a week, for the first time in several years. When I started working again, my value went up in my own eyes. I proudly used the phrases 'at my work' or 'I had to work today'. It took a few months to realize my real worth had not changed. It was not even that I judged other people but I definitely had judged myself. Of course it is ok to be pleased and thankful and grateful that one is able to do more - but if my health deteriorates again God says I will be just as valuable as I am now.

Thank-you again for sharing and teaching.
It is good to talk.
 

Community Builder

It can be a very difficult and tiresome burden. But how amazing how much our struggles can deepen our relationship with Christ!  That is something I will forever be grateful for. And it is amazing to use your struggles and lessons to encourage others. 

Indeed, we are often our own harshest critics. I completely understand. 

Thank you so much for sharing with me! 

Community Builder

 Thank you for sharing this.  I have both schizophrenia and diabetes Type 2, and because of the side effects from my meds I often struggle with diarrhea.  If I can't get to sleep at a certain time at night, the sedative in my antipsychotic carries over the next day, and I never know at what time I'll wake up when I go to bed at night. Sometimes I wake up REALLY EARLY like this morning (6:40), and other days I'll get up at noon and still be drowsy, but now that my mom knows that it's because of the sedatives that pharmaceuticals put in psychiatric meds to make people sleep, she has stopped assuming I was indulging myself.

Community Builder

It can be so hard maintaining a routine when you struggle with chronic health conditions, and that, in addition to all the other struggles, can be very hard. 

Thank you for sharing with me!