Category Archives: Invisible disease

27 Gifts for Someone with Ankylosing Spondylitis

FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item.


While gift-giving is common for special occasions and during the holiday season, people living with Ankylosing Spondylitis (AS) could use a little extra love year-round. Here’s a long list of items I use almost daily (I really have used all these items recently)! The prices I included are as of the date this was written:

Hot or cold? 

1. This Sunbeam Quilted Heated Mattress Pad ($70) is a little on the expensive side, but the extra padding covers the wires so you can hardly tell they are there.

2. This moist heat Battle Creek Electric MaxHEAT Pad ($65) is also pricey, but after over two years of regular use mine is still going strong. The cover is washable. Be aware that this pad gets super hot!

3. This style of Hot and Cold Reusable Ice Pack ($7) has been around for a while, but it still works really well!

Things to wear

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Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

 

First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?


Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Continue reading Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

What I Wish You Knew About Living with an Invisible Disease

You may look at my young, healthy-appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?”


What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to faux-cure-evangelists.

What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.

What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.

What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?

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I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

If you don’t already know, pain is a deeply personal subject for me. I have been fighting ankylosing spondylitis (AS) since 2000, since I was 13. AS is an often-invisible, progressive disease that attacks joints of the body with painful inflammation. In severe cases, it can cause bone spurs to grow that can fuse the spine into a single long column of bone. AS can also damage multiple organs, including the intestines, liver, kidney, lungs, heart, and eyes. There is no cure.

I have made it my mission in life to do something about that ‘no cure’ part by raising awareness in all the ways that I can. I have been on the news, written articles, interviewed celebrities, represented patients at conferences and meetings, given speeches (including a TEDx talk), and testified in state legislative hearings and with members of Congress on Capitol Hill.

Recently I became a performance artist, too.

Each month, Crocker Art Museum in Sacramento, California hosts a themed ‘ArtMix’ night. In August 2017, the theme was Combust, inspired by Burning Man, and I was granted permission to be an interactive art installation. I named the piece ‘My Body the Temple,’ inspired by the Temple at Burning Man.

I wore a bikini, sat on a stool, blindfolded myself, and offered people the opportunity to write their invisible pain on my body.

Island
Image by Rich Beckermeyer, Rich Beckermeyer Visuals

Continue reading I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.