Category Archives: Relationships

Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Grief, Invisible disease, Relationships, sickness, spondylitis, spondyloarthritis

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

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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? →

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Orlando Happens Every Day

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We say it would never happen here. It could never happen to me.

But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.

We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”

Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.

We don’t want to hide. Continue reading Orlando Happens Every Day →

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Reclaiming Our Bodies; Sex and Ankylosing Spondylitis

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I wrote this article, which first appeared on http://www.ThisASLife.com in November 2015. What you see here is an unedited, shared version with a different cover image. The direct link to the original article is here: http://www.thisaslife.com/lifestyle/sex-and-ankylosing-spondylitis/ 

 

I recently attended the American College of Rheumatology Annual Meeting in San Francisco as a patient journalist working with This AS Life. While I did not know what to expect, a session about sex and rheumatic diseases caught me completely by surprise. The session titled, “Sexuality and Intimacy in Rheumatic Diseases Study Group,” ignited my interest, so I made sure to attend.

To be honest, it’s a really uncomfortable subject for most of us to talk about whether we have Ankylosing Spondylitis (AS) or not. Sexual intimacy is supposed to be pleasurable and it can still be pleasurable even with AS.

When I walked into the session, I found a vastly different scene than the normal chair-filled room facing a PowerPoint-prompted stage. This session was appropriately interactive and small, creating an intimate setting for attendees. I was fascinated to see another patient – a woman with rheumatoid arthritis – speaking to the group of about 20 people sitting in a circle, along with a sexologist and a doctor as facilitator. At a conference where patients are rarely on stage (and even a bit difficult to find), this was refreshing to see.

What I learned or could relate to:

  • There’s a dearth of information and literature available about sex for people with rheumatic diseases.
  • Peer-to-peer conversations (in person) and online support networks (i.e. chat rooms or Facebook groups) are often a helpful go-to for people looking for advice, ideas and support.
  • Patients don’t always feel they can ask their doctors about issues related to sexual relationships.
  • Doctors often don’t know what resources to provide when AS patients ask about sex, or are not aware of local support groups.
  • Sex is understandably a difficult topic for both patients and doctors to talk about because treatment for chronic diseases is often clinical in nature, which leaves out emotional.

I’m no sexpert, but my experience as someone living with AS and the way I’ve adapted in order to enjoy sex may help you. For the record, I’m not a doctor – and just because something works for me, it doesn’t mean it will work for you. Having said that, here’s my recipe for good sex with AS:

  1. Schedule sex. Before you roll your eyes and skip to the juicy parts, let me tell you that scheduling sex can be extremely exciting. Putting sex on your calendar doesn’t mean it will be boring. Personally, scheduling intimacy allows me to prepare my body and mind for the activity. Have fun planning in advance, which can deepen your relationship (and your sex life, in particular), rather than allowing it to be a burden.

    Thoughts to consider: If you put sex on the schedule for the evening, start the morning off with sweet notes and initiate romance throughout the day (phone calls, send your partner off to work with a handwritten love letter, have lunch together). Make each other feel good throughout the day to build up for an exciting evening. Let me be clear, with the unpredictability of our bodies, even scheduled activities may need to be cancelled or rescheduled – and that’s okay.

  2. Foreplay. Place more emphasis on foreplay. Foreplay helps lubricate your body in addition to your sex organs which makes intercourse smoother. Your bodies will warm up together and there’s a greater chance of feeling good, longer, with less discomfort and pain. Speaking of lubrication, don’t be afraid to use lubricant.
  3. Communication. This is crucial to both (or all) partners involved. Have a safe word for when something hurts. If you need to change positions, say so. You can also be very specific: “My hips are cramping,” “I can’t do this position long,” or simply, “That hurts.” It’s equally important that your partner knows what makes you feel good, so communicate this in an encouraging way. Open communication is important to most couples, but I think it’s absolutely imperative for couples affected by AS. For me, being able to communicate to a partner that something’s uncomfortable enhances my sexual gratification in the end because it allows us both to find a new position that is pleasurable. Similarly, being able to show or tell someone that my body actually feels good is a refreshing feeling, especially when I’m used to my body being a source of pain.
  4. Stretch. For me, the most important (note that I said important, not pleasurable) part of sex is what happens after. The moment intercourse has finished, I stretch my hips and my back with the help of my partner. Incorporating post-intercourse stretching adds to the intimate experience. It helps your partner learn about your body in a loving way and gives them an opportunity to explore your body when you are still relaxed. Turning something that could be seen as a burden into a romantic exercise can help bring you closer.

People living with AS have adapted new ways to open the dryer door, tie our shoe laces or even roll over in bed at times when our bodies don’t function the way we need them to. We can also adapt when we have sex, too. It’s important to remember that sex can absolutely be a positive, safe, empowering and pleasurable experience. Our bodies are absolutely capable of feeling good, and we should never forget that.

What are your recipes for good sex with AS?

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My Queer Story

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Elementary school:

+I’m on the school bus sitting behind an older girl. She is playing with her hair and I stare at her, intrigued. She turns around and says, “What are you staring at, white girl?” I blush deep red and look away, unsure what I did wrong.

Middle school:

+I still wear my brother’s hand-me-downs. I’m comfortable wearing shorts that reach my knees, jeans with holes in the knees, and shirts multiple sizes too large for me. But I begin to feel self-conscious because the other girls and some of the boys bully me. I am pressured to start dressing more like a girl and I begin to wear tighter jeans and shorter shorts.

+A new boy moves to town and he becomes my boyfriend. We kiss behind a building during a school field trip. We ride bicycles and play soccer together.

High school:

Continue reading My Queer Story →