Why Diagnosis Was a Relief For Me—and When Getting Better is Hard

Being diagnosed with a lifelong condition is a source of grief for many people. But diagnosis was actually a relief for me—and my grief sometimes gets worse when I get better, not just when I get sicker. 

I am unfortunate enough to be living with an absolute monster of an autoimmune disease commonly known as lupus. For eight years before I was given the label ‘lupus’, I lived in an Alice-in-Wonderland type of upside-down world where my body would try to kill healthy organs for no sensible reason. 

I thought I was going mental. (Perhaps the doctors thought so too.) My life was a whirlwind of random symptoms and possible diagnoses, swirling round in my head with nowhere safe to land. 

Then I got diagnosed with lupus. Suddenly, the whirlwind pieces dropped into place. The madness made sense. The random elements lined themselves up into patterns. I went from feeling like a crazy person to finally understanding what was happening in my body. 

Then I got diagnosed with lupus. Suddenly, the whirlwind pieces dropped into place.

For some people living with chronic illness, especially autoimmune disease, diagnosis is more than a blood test or single doctor’s appointment. It’s years of testing and retesting, research, second and third and fourth opinions, eliminating various possibilities one by one. Getting that label can be an almighty relief, even a cause for celebration, like finding a long-lost treasure. 

No, I did not grieve when I received the lupus label. But this year, when I got so sick I was unable to work for six months, I grieved hard. And now that I am back at work, I am grieving all the more. 

Who said grief made sense? 

Who said grief made sense?

Grief typically surfaces when we have lost something. In 2022, I lost six months’ worth of work, friendships, retreats, self-care, ministry, conversations and simple healthy living. That grief makes perfect sense.

So why am I sad now that I am back at work? Shouldn’t I be turning cartwheels? 

Here’s my theory so far. Returning to some kind of ‘normality’ for those of us living with chronic illness can be a shock to the system. I was sick for six months and I acclimated to that. I was accustomed to living in lockdown, keeping silent, keeping my distance. Suddenly I could go back to work and it felt good, but…weird. ‘Is this OK? Am I really well enough to be here? I could get sick again any second!’

For those of us living with chronic illness, returning to ‘normality’ can be a shock to the system.

That’s part of the grief too: it could happen again at any time, and if it does, it will render me powerless as it did this year. Not a nice thought.

Relief can also give way to grief. I have spent the better part of 2022 feeling anxious about what was going on, worrying I would never get better, and getting pretty angry about it all. Perhaps grief is a reaction to the fear and anger finally having a place to settle. 

Finally, I just feel sad about having this body. I am sad that my body tries its best but still gets a lot of stuff wrong. I feel sad that when my body tries to communicate with me, it speaks a language I do not understand. I am sad my body is unwell and I am powerless to help it. 

I just feel sad about having this body.

‘Mind over matter’, a friend quipped to me this week. And I felt sad. Because for some of us, no amount of willpower or hope or positive thinking is going to make a scrap of difference. Our bodies have the ability to pull the rug out from under our feet. That brutal reality is terrifying—but I would rather live in that reality than pretend I have any semblance of control over lupus. 

Perhaps that is what the experts call, ‘acceptance’. 

Do you, or does someone you know, live with chronic illness? Do you experience grief around it, even when you feel better? How do you make peace with that grief? Share your story. Let’s have a countercultural conversation. 

5 thoughts on “Why Diagnosis Was a Relief For Me—and When Getting Better is Hard

  1. Thanks Steph and Jenny for your comments and for framing chronic illness so well!
    I can relate to wanting answers and a cause/label for ongoing health issues and the unpredictable nature of autoimmune issues. It really is like living with a rug that gets pulled out from under your feet, and it doesn’t matter how good a quality that non-slip rug is, and if you even add a non-slip liner underneath and weigh it down with a piece of furniture, wear expensive non-slip sensible shoes…you still often end up on your back needing to rest, when the world goes on around you & without you! There is also a big equilibrium adjustment that continually takes place and can cause stress & grief upon recovering from the latest health setback…how much activity/work/catching up on living & doing again is okay and can my body handle?
    Your reflections are inspiring and yes so thankful the Father carries us and gives us peace xx

    • Ros, I know the feeling of that metaphorical rug being pulled out from under you! Sometimes we can do everything right and everything can still go wrong. Even then, the Father is with us. And you’re right, each flare and recovery involves much adjustment, physical as well as mental. Thank you so much for sharing – I am glad to know I am not alone!

  2. Oh Steph, I completely empathise. Thank you for sharing this and expressing it so beautifully. I read it and was so relieved that someone else ‘gets it’. The grief, the acceptance, the fear that I might suddenly get well and I won’t know how to live that way… All the second guessing, the relief that I now have a label for what’s happening in my body, the proof that this isn’t all in my head… It’s a long journey. Doctors aren’t always kind or understanding and I feel as though people get sick of me being sick. I get it. I do. I get sick and tired of myself being sick and tired. Some days it’s hard to find joy, but it’s always there, sometimes in a glmpse of sunshine, in my boysenberry bush overflowing with fruit, in a cat snuggling up to me, or a kind word or smile from family or friends. Most of all, in the knowledge that Jesus understands and will give grace for every moment.
    Thank you for being a voice for so many of us.

    • Jenny, the feeling is mutual! I too am relieved that someone else ‘gets it’! I resonate with your experience of the label being positive, it gives us credibility as patients, and personal validation for our lived experience. I loved hearing about your moments of joy, those sparkling glimpses of light, like stars in the night sky. Hope you can find more of those. And you are absolutely right: Jesus loves us and he’s with us no matter what. Peace to you x

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