Category: relationships

Proud Moment

Posted on by Grayson Schultz

I wrote this in the wee small hours this past Sunday morning while hanging out with my roommates for the last night of the Playground Conference in Toronto.

a photo of three mixed media hearts hanging with white text - "Proud Moment Chronic Sex"

A few weeks ago, I had a really nice conversation with my husband. Don’t get me wrong – 98% of our conversations are nice. This one was different, though.

First, some backstory

T has never really had to encounter physical health issues until he met me. Things like accessibility weren’t things that he needed to think about on a daily basis. Even when we were early on in our relationship, I was ‘good enough’ to go without those accommodations – and, honestly, far too proud to use them.

It wasn’t until we moved in together that my everyday health really got bad enough for him to see it. Shortly before that point, I had the worst flare-up of my SJIA since childhood – something that’s thankfully yet to be topped. I had a combination of my rash. It’s a salmon pink rash that usually will show up in the evening around 5 and then again before bed.

Fun fact – this rash is itchy for 5% of peeps. Of course, I would be in that smaller percentage. On top of that, I was also dealing with intense hive-like welts. These can be my SJIA rash, but it only was like that when I was extremely ill in childhood.

I wound up stuck in my apartment for a while dealing with this pain and discomfort. I used icy hot for the first and last time due to the inability to wash it off my hands and use of masturbation for pain control. It just felt like the universe was adding on too much shit.

Long story short, the last thing I wanted was for T to see me like that. I didn’t really see him for the worst of that time. It wasn’t that help wouldn’t have been useful, but I was also aware that it would be terrible to see. I could barely move my fingers, wrists, ankles, and toes. My face swelled to the point where I didn’t look like me.

From that point on, I became a stickler for accessibility.

Fast forward

A few months ago, I wrote the piece about adding image descriptions. As I say in that post, it’s something I think more and more about as I grow older. Already dealing with worsening vision on top of a history of iritis and anterior basement membrane dystrophy, I think about often what will happen when my sight continues to decline. From a very selfish standpoint, I know that I want to be able to imagine what my niblings look like as they grow and accomplish so much.

After I wrote that piece and had been circulating it, my husband stopped to consider the work involved with putting image descriptions up. T asked if there was any specific way you’re supposed to compose descriptions, so I gave him the short verbal version of the post. While I was grateful he asked, I thought it was more about the fact that I had written about it that prompted these questions. After the last few years, I’ve grown less hopeful about reasons behind people’s questions – even those closest to me.

We’re very active in podcast-related facebook groups. As T becomes more active in these spaces, I’ve noticed his focus on helping others grow. He has always been a helpful and very kind dude, but it’s becoming even more pronounced. I like to think that we bring out the kindest and more passionate parts of each other.

Sometimes the two notions fight each other. Being passionate sometimes curtails our ability to be kind because, for example, anyone can understand why a parent might want to park closer if they leave children in the car. However, passion (and law) says parking in an accessible spot to do so without an accessible parking permit is wrong.

Also, yes, this really happened a few years ago at one of our favorite pizza places – after an ice storm. Yeah, the face you’re making? Same.

One of the reasons why people call me a bitch or asshole is because I don’t hide my passion for the comfort of others, especially when they need to understand how harmful they’ve been and/or if people don’t share the same marginalizations. That can make it much harder to understand and even empathize.

Honestly, when T asks me questions about accessibility stuff, I geek out. It’s like asking me about sex. Hello! So, naturally, I talked a lot about the description question.

The proudest

T began to use image descriptions regularly in groups. He is working on being more accessible, not just because I think it’s good and needed but because he totally gets it. A few years ago, he had Lasik to correct his vision. I think he’s been more mindful about eye stuff ever since.

My favorite thing is that T does this even in spaces I don’t regularly go. There is one FB group for a podcast we both love that I don’t regularly visit because items from racist and TERFy pages get shared. Upon bringing up concerns, I was told that the content itself wasn’t the issue so why would it matter where it came from.

Again, that face you’re making? Like someone just farted right under your nose? SAME.

Anyway, I began to disengage with the group itself because I knew things that brought up harmful feels would be shared. T still adds descriptions in there, even though he knows I probably won’t see it.

Why are you talking about this? It’s 12:30 AM at the end of Playground. You should sleep before your 12-hour drive tomorrow.

This feels like a humble brag, but it’s more than that.

It took me years to feel like T really understood what I meant about a lack of accessibility. Even then, it’s different than him going through these things and truly getting it. Our mental health issues are similar enough that I feel witnessed on that while being able to provide him support, too. The physical limitations are just hard to fully grasp if someone doesn’t go through that.

While sharing a tweet with my roommates that T had put into a group, I nearly cried. Part of it was con drop and the post-exertion stuff. I’m sure part of it was wrapped up in missing T and being excited to see him once I get home. Mostly, it’s about T still being kind T even when I’m not home.

We all change a little bit depending on the people we’re around or situations we find ourselves in. This is the first time I’ve traveled in 2018, though, and the first time I’ve been away since T started writing these descriptions. I think part of me assumed he was only doing it to flatter me – and seeing that’s not the case was really necessary. It was uplifting.

On top of that, I was just really touched by the idea that I got through to him on so many things. It’s hard for the two of us to talk about heavy emotional things and, honestly, I don’t think about what things to discuss based on things we need to ‘fix’ or whatever. I don’t and would never give T a honey-do list on changing for me.

After talking today to a room full of amazing chronic peeps and allies/partners, though? It was like the icing on the cake.

Giving ‘The Out’ is Rooted in Systematic Ish (but still important)

Posted on by Grayson Schultz

photo of a femme and a masc hugging with a white overlay and black text "Giving 'The Out' is Rooted in Systematic Ish (but still important)" and "Chronic Sex"

There are many experiences that transcend illness or disability type. One of those is giving partners ‘the out.’ Having that conversation is, oddly enough, something I’ll never regret. What I do regret is why we’re having these conversations.

For many of us, this conversation comes from a combination of feelings. Those feels, though, are a problem. They come about from insecurity, shitty self-esteem, ableism, and more.

We don’t feel worthy of love because we’re sick or disabled.

I know that feeling well. It sucks. Even more importantly, though, it’s so wrong.

You are so worthy of love. We all are. How much we are loved should never be dependent on our health, race, ethnicity, gender, sexual orientation, or other factors we can’t change.

Ableism is a jerk

The thing I hate most about internalized ableism is how we can’t always recognize that it’s ableism speaking. We think we’re doing abled people a favor by staying small or assuming they wouldn’t want us as partners.

We’ve taken that message that our health makes us lesser, unable to be partners that truly participate in relationships. Instead of being present in our relationships, we feel guilty that we can’t be the perfect partner. Sometimes we take to praising our abled partners for sticking with us as if they deserve a medal of honor. To save our partners, we don’t share how we really are doing, the pain we’re in. We think we’re being noble when what we’re doing is harming our relationships in the long run.

Of course, the flip side of that ableism is not being seen as desirable from outsiders. It’s not completely their fault – thanks, society! – but it surely doesn’t help when people see us as objects of pity. They don’t understand their privilege, how harmful it is to treat us that way, or really how to be in a relationship with us.

Giving ‘the out’ can still be helpful though

With my husband’s depression and how all-encompassing it can be, I have been able to see both sides of this. It’s hard to be someone’s partner when you know you can’t help heal their wounds. It takes a toll on even the strongest people. That’s part of why I think conversations where we give ‘the out’ – tell our partners it’s okay if they can’t handle our shit – is important.

It brings up conversations about what we feel like we can handle. As hard as it is to say, it can help us weed out people who won’t be there for us when things are hard. There are a lot of people who aren’t dependable when the shit hits the fan. I don’t know about you but knowing that early on is helpful – it tells me to not waste my limited and precious energy on them.

Sometimes it can solidify that we’ve got a great partner, too. In unofficial ways, I’ve given ‘the out’ to my husband a few times. Each time, I get hit with the knowledge that – for the first time in my life – I have unconditional support. My partner, my family, is here for me. That reinforcement is so important for me because I’ve never had that, not in a non-abusive way.

I won’t say it’s completely perfect. To be honest, it’s a little scary – I’m used to everyone leaving at some point or another. Still, to have that kind of support – to know I have a partner who will wash my hair for me when I can’t move my fingers – is comforting. In middle of everything that is so chaotic and unpredictable with my health, having someone serve as a rock is exactly what I need.

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Why I Don’t Fawn Over My Husband

Posted on by Grayson Schultz

a photo of two people (one male one female) on their wedding day laughing with a cut out design on the front; "Why I Don't Fawn Over My Husband" in green and "chronic sex" in white underneath that (bottom-right)

On my personal site, Not Standing Still’s Disease, I call my husband ‘T.’ If you see it here, that’s why.

I haven’t talked about my marriage as much on here as I have elsewhere.

In September, we’ll have been together for a whole decade… which is a little daunting to think about. It feels like longer and shorter at the same time. Sometimes I forget if it was him or someone else I went to events with.

an off-center photo of two people kissing; the main person is wearing a white tee with red text on it and has shorter dark hair; the person on the right is wearing a green shirt with five o'clock shadow and glasses barely visible

When I met him, I was pretty sure we’d get married. After the last few relationships I had, I knew I wanted to disclose my chronic health issues early on. I’d been led on by a few guys who claimed they wanted a long-term relationship but only wanted sex.

I mean, I was 19 so sex was totally fine with me! Mostly I was tired of the deceiving part.

T and I got frozen custard and I mentioned that I had “this arthritis thing.” The way I phrased it really helped him to not catastrophize it. Then again, that’s when I didn’t have medical care and wasn’t diagnosed with most of my other health things.

I interviewed T in 2012 for NSSD. Check it out here. Ironically, that was also the first year I started talking about how arthritis crud affected our sex life.

It’s no secret that my health fun has been hard. It seems like it keeps getting worse, like now when I’m dealing with undiagnosed stuff. T’s still supportive and as helpful as ever. He still takes a lot in stride, holding back a lot of stuff he should probably tell me (like how my lack of vacuuming bugs him, etc.). Add to that how us both being on antidepressants has killed our mutual sex life and… well, you figure out quickly why I review sex toys.

Still, he’s my penguin.

two white people are seen hugging/leaning on each other from behind while sitting next to each other; the male on the left has a plaid shirt and brown hair; the female on the right has a white shirt and reddish hair; trees and foliage are in front of them

I see a lot of disabled or chronically ill people who overly praise their partners. That’s something I felt pushed to do in the beginning when I knew no other 20-year-old would put up with massaging my knees. Now that we’re on either side of thirty and both well-versed in social justice, I don’t feel that way.

Don’t get me wrong – he’s awesome. Our relationship is good. Things – including my illnesses – are stable and at least semi-predictable. We’ve gotten into a rhythm that works for us, have both gotten better at communication (after a number of stumbles on my part), and I know how to read him pretty well.

The thing is… praising him for sticking with me when I’m so fucking ill just perpetuates the myth that those of us with health crap are horrible choices for partners. I won’t fall into the ableism trap that is more-abled-partner worship.

Mountain photo with the following overlaid in white text: "Ableism: THE SYSTEMATIC OPPRESSION OF DISABLED AND CHRONICALLY ILL PEOPLE THROUGH LANGUAGE, ACTIONS, AND OTHER FACTORS" and "Chronic Sex" at the bottom-middle

People fall into this trap a lot. It’s easy to do, given messages we receive about our worth as people who are chronically ill or disabled. It’s assumed that our lives aren’t worth living or that we should be somehow pitied because of our existence. When we worship our partners for ‘putting up’ with us, it just reinforces those ideas.

The world is full of assholes who don’t see disabled people as people. They don’t think living our struggles with us is a worthy journey. That doesn’t mean we should sanctify the non-assholes, though, for being decent people. The reality is that we all have different needs in relationships, whether that’s related to a disability, past experiences, abuse, or a variety of other factors.

Like any person, disabled or not, we all have positive and negative attributes. When you’re a partner, though, you work together and can help to balance each other out.

Sure, there will be more time spent at doctor appointments or sitting in waiting rooms while I get MRI after MRI than there would be while dating an abled partner. There will be more frustrations with health, the medical system, and other forms of systematic oppression. Politics will start mattering to you even more, especially attacks on health care rights… which means you’ll be groggily going to work after staying up until 2 in the morning watching C-SPAN.

That said, I can provide a lot more empathy than the average partner. I’m pretty good at working around things I can’t do, whether that’s sexy or not. You’ll get to help go through pictures of me that are sexy for the sake of being sexy. You’ll always have someone who goes with you to doctor appointments and can advocate for you, there or calling to order pizza.

Just because some parts of our lives are harder because I’m disabled doesn’t mean I’m not a badass partner – or that I should feel crummy for being sick. Without that power difference, there’s really no need to put T on a pedestal. I can still appreciate the neck rubs and late night conversations without deifying T for ‘putting up’ with my illnesses.

sepia-toned photo of two people holding hands - only the hands are really visible against a desert-like backdrop - both hands have a lot of jewelry on them - a white overlay on top has black text over it asking "Are You Tired of Cishet Studies on Relationships and Pain, Too" and the same setup below says "chronic sex"

Are You Tired of Cishet Studies on Relationships and Pain, Too?

Posted on by Grayson Schultz

I was really excited to see a new study come out saying that a touch from our partners can help relieve pain. It’s one of those obvious things, especially to anyone who knows about how our brains release oxytocin. The hormone has long been known to relieve pain as well as being the ‘love’ hormone.

It increases bonding between people, especially when they’re physically close to each other. For example, it’s released during sexual activity!

I wanted to know more about the study, so I turned to their free journal article on NCBI.

Write-ups don’t tell the whole story

One thing I found interesting was that the study is also heavily focused on empathy. Sure, a loved one hugging you while you’re in pain may help – but it helps more if they care you’re in pain, too.

Additionally, they studied both respiratory and cardiac response in both partners as well. Heart and breathing rates in the non-pain partners tended to try to match those of the pain partners when touch was involved. When pain happened without touch, this didn’t happen.

Anyway, I was excited to see that someone verified something a lot of patients and providers have known for a long time…

Until, you know, I realized this study was only done on cishet couples.

Why are studies always on cishet couples?

From the study write-up:

Dr. Goldstein and colleagues gathered 22 heterosexual couples for their study, who were all aged between 23 and 32.

The researchers asked the couples to participate in a range of tests that replicated the experience of being in a delivery room.

The female participants were assigned the role of “pain receiver,” while the men were “pain observers.”

There’s some good ol’ fashioned sexism in here, too, right?

Barf.

In their limitations section in the journal article, researchers discuss how only females underwent pain and males were the outside partner. They do suggest that there need to be similar studies on same-sex couples, but neither address any other LGBTQIA+ community nor why they chose only cishet couples to begin with.

It’s 2017. Why is it that LGBTQIA+ people still aren’t being involved in research? How meaningful is research when it leaves out an increasingly sizeable chunk of the population?

We need inclusive research

KLB Research logo with tagline: valuing diversity in academic research

I had the pleasure of seeing Dr. Karen Blair of KLB Research speak at the Guelph Sexuality Conference.

Karen was in college when she discovered she was a lesbian. As a result of taking sexuality courses, she began wondering why cishet couples were always the ones in research and books. So, like all great innovators, she started doing the research that needed to happen.

Dr. Blair even did a study right after the Pulse massacre to understand how this was affecting the LGBTQIA+ community. Listening to her speak about the Pulse study was incredibly profound. There’s even a follow-up study accepting participants.

What can we do?

We need more people like Karen – and more awareness of the work she and others do on inclusive research.

Share studies looking for participants whenever you can. Support or participate in The Pride Study. Stay tuned for when ORCHIDS gets going.

Demand more representation. When studies come out and don’t include anyone other than white cishet abled middle-class Americans, we have to speak up and share that this is not reality. This is not inclusive research.

Edit: Our pals over at Clara Health just wrote about the lack of LGBTQQIA2+ representation in studies. Check it out.

Photo of my hand, featuring my silver band with a sapphire, interlocked via pinky with T’s

What a High Pain Day Taught Me About Hiding My Illnesses

Posted on by Grayson Schultz

TW: mentions of covert incest. This first appeared on our Medium publication page in November 2016.

I have always been someone who takes care of others.

It’s something that I have had to do.

Growing up in an abusive home, I had to take care of everyone — more emotionally than physically, but both for sure. I was the emotional partner for my mother, something called Covert Incest.

Because of that, I’ve always been incredibly independent. I have never wanted anyone else to feel like they had to take care of me. That goes double for my marriage, frankly.

Part of it is that I internalized the ableism that goes along with someone marrying a chronically ill/disabled person. I mean, after all, the expectation is that the ‘well’ one has to take care of the ‘sick’ one. Between that and my independence, I have never wanted my partner to feel like he had to take care of me.

He recently had LASIK and then got a cold a few weeks later, so I’ve been used to taking care of him. It wasn’t even a thing that I was worried about. He needed care and I was here. I mean, DUH.

Lately, maybe because of being more of a caregiver, I have been better about sharing and showing how I am doing and, in turn, my partner has been incredibly understanding and helpful.

Sunday morning, I woke up with intense stomach pain at 3 AM. It was clear that I needed to use the bathroom, so I did so. I spent a while in there, crying because the stomach pain was so bad. Frankly, I was wiping as quickly as I could because I was in so much pain that I thought I would puke, too.

It was not a proud moment.

By the time I was done, 20 minutes had elapsed. My stomach was still in an incredible amount of pain, so I went to the couch instead of my bed. I didn’t want to wake T up and, besides, I wasn’t sure sleep would visit me again.

It did, eventually.

When I woke up again, I was sure that I would be in a ton of pain. I wasn’t, which was perplexing, but I wasn’t going to question it, either.

And then, it happened.

A brick wall with an overlay that says ‘fuck this pain’ and a fancy curly doodle underneath

Over the course of a short time — something under five minutes — my pain went from not-an-issue to holy-fucking-shit-why.

Everything got heavy. I was barely able to hold up my phone. My muscles felt like what I assume they would feel like if I was able to run a marathon or do the Ironman.

I couldn’t hide it.

T asked if I was tired and I explained what was going on.

“What can I do? Ice packs? Biofreeze?”

Without hesitation, he jumped in and helped with whatever I thought might be helpful. A few minutes later, he had grabbed the Biofreeze and we slathered my arms. He snagged me an NSAID, too.

I don’t care if I can’t do much with my legs, but being unable to do much with my arms is a problem.

Within probably 30–45 minutes of the onset of the pain, I was asleep.

When I woke up, the initial pain was eased. My muscles were still in an incredible amount of pain, though.

T took me to our bedroom and asked what he could rub to help. He rubbed my hands, my feet, and my knees.

I apologized to him for all of this. I’m so good at stepping in and taking care of him, he said. He figures that I know how to best take care of myself, so it’s not a thing.

“But I’m always here to help when I can.”

In that moment, I realized a lot.

As vulnerable as so many applaud me for being, I still have a long way to go. I’m not nearly as vulnerable as I pretend I am.

I try to not let others see my illness fun firsthand. When I’m feeling bad and T’s at work, I talk on social media but rest. I write about what I’m going through, but in a safe space — at home, usually alone, and usually feeling slightly better than the time period I’m writing about.

This goes double for when I am sick at home. I cancel calls or FaceTime meetings with friends. I hide the extent of my illnesses from everyone — even T.

I have to stop pretending that I’m fighting against my illnesses on my own. The reality is so far from that — I am surrounded my love and support, and nowhere else is that true than at home.

Black and white photo of a bride and groom dancing

Why It’s Hard for Me to Communicate on my Illnesses and Pain

Posted on by Grayson Schultz

A few months ago, my husband and I had our first real fight after nearly a decade of being together. It had to do really with my lack of communication on how I’m doing. As much as I help others with communication skills within relationships, I’m not great at verbally communicating my own illness fun. It’s how I started writing about everything so, ya know… I just wrote this to him as a way to share more of my feels. This piece originally appeared on our Medium publication in February.

Hey love,

I know it’s hard for you to see what I’m going through. Invisible illnesses don’t make it easy for people to see all the ways they impact my life. I’ve gotten pretty good at coping with my illness fun, too, which doesn’t make it easy to tell when I’m struggling. Like a prey animal, I hide when my pain increases because it makes me vulnerable. I become an easy target for people to mock or harm.

Despite all this work I do with others on communication, I’m not great at it myself. I know that if I communicated what I’m dealing with better, it would improve both of our lives. It’s hard, though.

Just like showing my illness fun is vulnerable, talking about it is, too… except on steroids.

It’s easy and commonplace for me to notice my own pain or how my illnesses are being exacerbated on any given day. I have to do this in order to survive my day. Living is full of calculations for me —

Which extra medications do I take at which times? When do I use the ‘big gun’ medicines? Which of my non-medicinal relief methods can help, and in which order should I use them?

This has all become as natural to me as breathing.

Everything I do and experience is colored by pain and illness, even on the best days. When I talk about all of this, it reminds me how sick I am. It’s just a reminder of how differently you and I experience life. I know that my illnesses and pain doesn’t mean I’m lesser than you. Still, my depression and anxiety love to play on that.

It makes me scared, too. I get scared about how sick I am and how many more rough than easy days I have lately. I fear for what this means for my future — our future. My anxiety takes over and wonders:

Are my medications working? Do we have to switch again? I’m running out of options. How long will I live, then?

And then I wonder how long you’ll stay.

You say you won’t leave. Part of me knows you won’t. Still… there is so much evidence against relationships and illness. I can’t help but worry about this. How sick can I get before you decide it’s too much, even if you don’t tell me?

When I can’t cope as well with all this, it also makes me feel like a failure.

I’ve been sick since I was five. I’m so adept at hiding how painful existing is for me. Even physicians often don’t believe how pained I am because I smile and laugh.

The truth is, if I didn’t do those things, if I didn’t hide how I’m doing, I wouldn’t survive. If I had to talk about every single thing I endure and the pain I experience, it would remind me of how subpar all this makes me feel. It’s not easy on my mental health.

I know that my lack of communication sometimes makes living with me difficult. I promise that I will work on communicating better, even if we use code words for things. I will try to be more open about how I’m doing, what I can do, and what I need.

But I need something from you.

When I talk about my pain and illness state, please listen. Ask me questions. Hold my hand. Hold me. Recognize how hard I’m trying to break this habit of hiding.

It isn’t easy and it won’t happen overnight, but I’m trying.

'Study: How Fibromyalgia Impacts Relationships and SEX for Men' in white text over a purple background next to a photo of two people's feet intertwining in a bed with white sheets

Study: How Fibromyalgia Impacts Relationships and SEX for Men

Posted on by Grayson Schultz

The University of New Brunswick has been conducting some amazing studies as of late. Currently, they have one looking to understand how fibromyalgia impacts relationships and sexual well-being. This study is specifically looking for males with fibromyalgia. Due to how hard it’s been to find men, they are giving participants $75 CAD.

These researchers are also looking to continue research on sexuality and chronic illnesses or chronic pain conditions. The cool thing about this is that the next step in this study is to interview our partners. I love this.

You can learn more about this group at their site. You can view and download the consent form via PDF here and email that to rehablabUNB@gmail.com.

Guest Post: Maintaining Intimacy Despite Chronic Illness

Posted on by Guest

I am a firm believer that intimacy and desire are actually fueled by what can be found in a person’s heart — their goodness as well as their sex appeal, their overall compassion and strength as well as their physical attributes.

But when my chronic illnesses are whipping me about like an untethered sail, I tend to feel like I’ve lost every aspect of who I once was, and that often includes my normal desire for intimacy. I feel unattractive and, at times, unlovable. I don’t want to be touched. I want to hide myself from everyone, including me.

I am in pain, unable to sleep, and I’m the first to admit that these things don’t exactly spur romantic inclinations. Intimacy can feel like just one more obstacle course I must navigate when it hurts to move.

Dealing with chronic illness can eat away at my inner resolve, bringing about a feeling of isolation (because nobody truly understands what I am feeling) and fueling my fear that I am no longer a sexual being.

When you are feeling well, it is fairly easy to accentuate the positive and feel attractive for your spouse or partner. But when you suffer with chronic illnesses your appearance can evolve into that of someone you don’t recognize.

With dark circles under my eyes and a frightening amount of hair loss, I feel as though I look like some sort of deranged Muppet. I find myself avoiding mirrors and I wonder how on earth my husband could stand to look at me.

But I have to say, for the most part, these feelings of being unattractive because of my chronic illness are my issue and mine alone. My husband does not see me the way I see myself when I look in the mirror.

I realized this when I caught him staring at me one evening as we sat watching television. “Oh no,” I thought. “He sees me… all raw and withered from this horrible illness.”

Did I look extra tired? Did I look fat, because exercise is so difficult when I am always in pain? Did I look unattractive because my hair is so thin now? I pondered every possible thing wrong with me that he could be looking at, imagining what he was thinking.

Then he said something amazing.

“Do you know how beautiful you are?”

Time stood still for a moment. I blinked and shook my head in disagreement. Didn’t he see the dry, thin hair and bald spots on my head?  Didn’t he see the bags under my eyes or the new creases on my face?  He couldn’t miss the look of endless fatigue in my eyes… or could he?

The truth is, I wish I could see myself the way he sees me. In that moment I felt unlovable for many reasons beyond my appearance. I felt he deserved so much more than the woman sitting before him, struggling for survival from the pain. I felt I might be losing every battle I was fighting. I felt like I was not the wife I wanted to be, either on the inside or in my outwardly appearance. I felt unworthy of any compliment.

But here is the lesson in all of this: some of the intimacy problems those of us with chronic illness experience are caused by our own self-loathing. Yes, there is pain, and that has a legitimate effect on how open we feel to intimacy, but often much of what squelches our desire is how we see ourselves.

Do you see yourself as a sexy partner or as a complaining burden?

Yes, you may be in pain and feel like you’re not the person you once were, but you are still you. Sometimes feeling sexy takes effort. It takes seeing yourself as a sexual, desirable being and being kind to yourself.

Here are a few tips to change your outlook and improve your intimacy:

  • Remember that feelings aren’t facts. You may feel less attractive because of your illness, but it is not always as visible on the outside as we think it is.
  • Remember that you are loveable and you deserve praise and compliments just as much as anyone else. People who love you see beyond the illness. They see the beauty in your heart and how you live your life. They see that facing each day and pushing through is proof of your strength and that is sexy.
  • Take your time. You have the right to feel every emotion and process the experience of being a chronic illness warrior at your own speed. If you are newly diagnosed with a chronic illness it may be difficult to move beyond the emotions you initially feel. This is natural, but do not allow them to set up housekeeping within you. Eventually, you need to focus on all that you still can do and all that you are. You are more than your illness.
  • Take the time to take care of you. Do something for yourself that makes you feel good about your appearance, accomplishments, or simply feel more relaxed. Get a massage if that helps to ease pain or get your hair done if that makes you feel better about your reflection in the mirror. Try and take care of yourself as you did before you got sick.
  • Focus on two things you love about yourself. Think of them at least once a day and compliment yourself on them, so that this positive voice is the one in your head — not the negative one that tells you all that is wrong with you.
  • Keep communication with your partner open. If certain positions, movements, or specific activity hurts you or is just too difficult when you are not feeling well, discuss alternatives with your partner. Openly talking about your desires and feelings can actually increase intimacy between partners and improve their understanding of how you feel… which is knock-dead sexy.

You may need to practice these supportive, complimentary affirmations to overcome the negativity that goes hand-in-hand with any chronic illness.  Those who battle pain each day, or illness that impacts multiple aspects of their life, often have difficulty feeling their normal, typical levels of desire.

But remember, desire often begins by feeling good about yourself as well as being connected to your partner, so don’t let your struggle get the upper hand in how you feel about yourself or your relationship.

Offer loving care to yourself first, and remember you are more than your illness.

Barbara Leech is a mother of four who has battled lupus for more than 30 years. Also diagnosed with fibromyalgia and Hashimoto’s thyroiditis, she considers herself a survivor of all things: chronic illness, divorce, starting over. She is passionate about family, faith and small victories. You can find more of her writing on NewLifeOutlook. 

Welcome to Chronic Sex!

Posted on by Grayson Schultz
I recently started blogging about sex and relationships over at CreakyJoints. You can follow the links below to get to the posts over there.

You should also check out Cara’s podcast, In Sickness + In Health. The episode where we sat down to talk #chronicsex is here. Jessica Gimeno and I also recently discussed 5 Tips for Dating with Chronic Illness.

Posts on here about sex and relationships can be found here:

Here are also some products and stores that I enjoy or can recommend:

You can find more information on the resources page.
Below you can keep in touch with the #chronicsex hashtag, which you can use to ask me questions, discuss issues, and more!

Chronic Sex is also about Self-Love and Self-Care. Here are some basics to get you started:

I would recommend these two pages first, as they’re great for beginners:

Once you have the basics down, move on to these: