A Funeral for My Health

Editor’s note: I know I have not updated this site in awhile, but I’ve gotten a few requests to do so, so here I am. This is a column about the grief I felt after being diagnosed with EDS, which happened in March 2018. It originally appeared on the Pain News Network.  It took a long time for me to process everything. But I’m happy to report that a week after I was diagnosed with EDS, I went on a date with a guy name Chris, and we’ve been happily dating every since. So I did, in fact, find love. (Something I was very specifically worried about in this column). It still remains one of my favorite columns I’ve ever written. It’s not exactly SEO friendly, or Click Bait, but I promise it’s worth a quick read. And if you feel like life is dealing you a lot of loss right now, in whatever form that may be, let me tell you that you can get through this to the other side. But for now, take all the time you need to sit in your grief — it is worthy of your time, and there is no rush.

I want to have a funeral for my health. I want to go abroad and throw its ashes into the sea while wearing a beautiful black dress and Jackie O sunglasses to hide my tear-stained eyes.

I want to take a week off work and forget to shower while everyone brings me casseroles. And I want all of my friends and family to acknowledge what I’ve lost with slideshows and poorly written eulogies that succeed in making everyone cry.

I want to drink too much wine in a vain attempt to numb the pain, and maybe even take up smoking and a few bad men.

I want to sit around with lipstick stained coffee cups late at night telling stories about how amazing it was — my health.

How it let me lead so many youths on mission trips to far-off places. How it let me fall in love so many times. How it let me shower without pain, lured me into believing I would be immortal, and how it allowed me to travel the world.

I want to take all the time I need to figure out how the hell I’m going to live the rest of my life without it. How I will find love, be independent, and survive all of my physical limitations.

And I want the planet to just stop turning for one second while I catch my breath and adjust to the fact that world is a different place than it was.

The obituary would read as follows:

Crystal Sue Lindell’s health died after a 5-year long battle with her body. Her health was 34.

News about the loss came via email from her doctor when he confirmed her worst fears: She likely had hypermobile Ehlers Danlos syndrome (EDS) — a diagnosis that meant that she would not only never get better, she would likely continue to get worse.

Her health is survived by her body, which will, unfortunately, carry on, in immense pain, despite the loss.

There is no cure for EDS, and as such, her health is completely dead.

She looks forward to seeing her beautiful health again one day in the afterlife, where she hopes it will be waiting for her among the stars.

In lieu of flowers, Crystal asks that donations be made to EDS Awareness, a non-profit online resource for the EDS community.

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  1. Feel so bad for you. At least you can write? I just had tongue cancer and been in a lot of pain. But that’s nothing compared to what you have. So young. So pretty. So intelligent. At least you found love too right? Glad I stumbled upon ur blog. Ok had first read your description of opiate withdrawal. Thing is if there’s no cure. Why even stop?

  2. Also. If u really want to stop. Why aren’t u taking Suboxone? You can do a three day taper and not have to go through such torcher hun.

  3. Thank you for this well written and insightful piece! Thank you for expressing the feelings many of us have who are living with chronic illness (20+ yrs Lupus, fibro, hashimotos, dercums, spondo,…). I happen to be an LPC and have always had a special interest grief and loss. Likely because my dad died 55 yrs ago when I was 5. People tend to think that the grieving process is only for those who’ve experienced the death of a loved one. Yet there are other situations where the loss is permanent as well, such as having a chronic illness. Often it’s not recognized as a loss to be grieved. Unless we allow ourselves to go through the grieving process which takes us to “acceptance”, we can remain stuck in our loss. “The Spoon Theory” written by Christine Miserandino does a beautiful job expressing daily life with chronic illness. This would be AFTER reaching acceptance. What you’ve written acknowledges the loss which will allow us to hopefully get there. I’d like to share what you’ve written with others to help them in their journey of living with chronic illness.
    Thank you!

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