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

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.

7 Ways to Feel Sexy Again

Not every one of these tips will work to help everyone feel sexy. That said, these are some of my favorite ways to start feeling sexy again.

Get in touch with yourself.

Getting in touch with yourself can mean different things to different people.

A bed with pillows sits in a soothing room; there is a hardwood floor with a rug at the end of the bed; light is coming through the sheer white curtains

One important thing for all of us to do is to figure out what sensations we enjoy. This can mean sexually – what touches or smells or sounds turn you on or help get you closer to orgasm? What are some of those things you don’t enjoy? What things would you put on your Yes/No/Maybe sexy times list?

This can also be non-sexually. What is your sense of style like? How about your communication style? Who do you find attractive?

All of these things, sexually or non-sexually, are going to help us build a foundation of self-love for the following steps.

Wear what makes you feel sexy – but is comfortable, too.

This is a common tip for discovering how sexy we are and loving our bodies. The one thing I’ve added here is the comfort factor. I used to love wearing high heels. Now, I just can’t get away with it for more than a day or two a month. When I do go for heels, I make sure to wear a pair that’s supportive and comfortable so I’m able to wear them as safely and as pain-free as possible. That should go for lingerie or anything else – unless, of course, a little bit of pain is sexy to you.

I love lingerie but just can’t wear it often. Many kinds of lingerie are tight, can exacerbate the prevalence of UTIs, and can be itchy. Now, though, I wear a lot of superhero underwear and lace bralettes (from Torrid!). The combination helps satisfy my gender identity (genderqueer) in addition to being comfortable and sexy in a very nerdy way.

a photo of me laying down on my stomach; you only see me from the waist down, with sexy lacy underoos on my bum; the picture is B&W with purple text overlay that says "love your body"

Lingerie or cute underwear can be a really fun way to surprise someone if you’re focused on looking sexy for them. You should always focus on comfort, though, and how you want to feel.

If not wearing something makes you feel desirable, naughty, or attractive, that’s a way to go, too. If you’re able to, sometimes going ‘commando’ or sans underwear can put a pep in your step. Just like with wearing fancy underoos, it’s like a special secret only you know.

Play up your features and show off.

Once you feel sexy and know what styles you like best, show it off! Take some selfies or, if you’re able, do a photo shoot with a pal or other photographer. Hell, you could do a boudoir shoot. I have one planned for mid-July and I’m very excited, despite being at my highest weight, because I know I’m goddamned cute.

A white girl (me!) with a teal shirt; subtle makeup save for red lips and eyeliner

The photo above is of me in 2013 when I was working on finding out what I wanted to look like the next year for my wedding. We ending up going slightly less retro than the above looks, but this was a way I showed off my eyes (with dark eyeliner) and my lips (with bright red lipstick). Now, though, I would aim much more for a faux hawk and neon pink lip gloss.

Styles evolve, and that’s part of why we need to take the time to get in touch with ourselves every so often.

Role play.

Pretend you’re one of your favorite people. If you think Beyonce or Ruby Rose or Vin Diesel are attractive, what would it be like to pretend to be them for a day? Would you carry yourself differently? Dress differently? Value your time and energy more?

Maggie Gyllenhaal playing Lee Holloway; B&W photo; Maggie is in a white shirt with black polka dots and is leaning over a desk with a surprised look on her face

Another way to go about this could be to fantasize about being characters you like. Do you think Lee Holloway from Secretary is hot? What about Magic Mike? How would these people act? What would they wear? How would they see themselves?

Sometimes using characters from movies or even real life people can make us feel even more unsexy if we can’t meet expectations like how they dress or move. If that’s the case, consider using someone from history or a book who might have less of a specific way of dressing up.

Get down, get down!

Dancing can be a wonderful way to feel sexy.

First of all, music is incredibly influential on our emotions. If you play “For Good” from Wicked, for example, I think nearly every person cries. Play “I Wanna Sex You Up” and crying may be the last thing on your mind.

There are many ways to dance. Doing it in a way that’s most comfortable and accessible to you is important. That said, if you’re able to do a striptease – even by yourself – it can heavily influence how you see yourself. I’m bad at buttons so I’m bad at stripteases… but I’m pretty good with moving my butt in some sexy ways.

Stick to whatever is most comfortable and accessible for you.

Speak your truth and set boundaries.

One of the most attractive things about people can how independent they are – especially if we aren’t necessarily able to be as self-sufficient. One way we can work on independence, though, is to speak our truths and set better boundaries for ourselves.

Speaking your truth can mean a lot of things. For me, it’s not holding back when someone close to me says something offensive. I correct them, even if the offensive thing isn’t directed at me or even impacts me directly (i.e., racist comments, etc.). It also includes speaking up against ableism and abuse in general, but especially that I’ve lived through. Not everyone appreciates that I share these things, but the people who matter do.

As far as setting up boundaries, there are a lot of things we can do. Again, only do these things if you are able to and comfortable with them.

A femme (from shoulders up) lies down with a blue towel rolled up under her head and cucumbers on her eyes

Set up times during the day when you don’t answer phone calls, respond to texts and emails, or use social media. In other words, set aside time for you – whether you use that as a time to be productive or to relax and rest.

Pull back from people who take without giving or who treat you poorly. Don’t let societal expectations keep you attached to bigoted or abusive family. When I cut my abusive mother out of my life, I began to feel incredibly independent, worth more, and became more confident.

Make time for you to do things that matter to you, whether that’s making art or being more physically active.

See yourself as you are.

When we’re dealing with chronic illness, pain, disability, and more, it’s easy to see ourselves as a collection of our ICD-10 codes or symptoms. We may see the weight we’ve gained on steroids or other medications, our assistive devices, and the patches we need to get through the day.

Do you see you in all of that?

An African American woman from the shoulders up; she is posing for a photo shoot; she has blonde hair in tight ringlets and is wearing jewelery

It can be really hard to remember who we are under everything we have to do to stay alive.

One fun way to remember you in the midst of pain is to have a photo shoot! You could just take a bunch of selfies, have a pal take a few pics, or even schedule with professional photographers. Hell, do a boudoir shoot if you feel like it! (Note: I totally have a regular photo shoot and a boudoir shoot coming up within the next month. I’m super excited about both!)

Another fun thing is to do something you love with close friends. Sometimes it can be something as simple as going to lunch with an old pal, getting a pedicure, or singing songs at the top of your lungs. Whatever reminds you how your life isn’t just about pain, illness, and disability is a good thing.

It’s your turn! What are some things you do to feel sexy? Tell us in the comments!

My 2016 #MedX Talk

Back in September, I was at Stanford University as a part of Medicine X (or MedX). I gave a talk about Chronic Sex (DUH) – how it came about and some preliminary research I did via Survey Monkey.

Guess what? It’s up on the YouTubes now!

This is reminding me that it would be great to re-dye my hair purple again.

The Power of Orgasm

Having an orgasm is awesome. I think it’s safe to say that we take them for granted, though.

They’re pretty amazing when you think about it – these little rapid muscular movements, almost spasm-like, that bring about the release of all sorts of chemicals in our bodies.

Before we get into the benefits of orgasm, let’s talk real quick:

It’s important to remember that anorgasmia is a very real condition that does prevent people reaching orgasm. It can affect all genders. There are all sorts of other conditions that can make it difficult to reach orgasm. I always suggest talking to doctors in these kinds of situations.

Additionally, up to 70% of vagina owners often cannot orgasm through vaginal stimulation alone and need some sort of clitoral activity. Keep that in mind because not everyone orgasms the same way.

Five Awesome Benefits to Orgasm

Stress relief

When you orgasm, your body releases more oxytocin. This brings stress levels down and helps you relax. It also can help increase that loving feeling between partners.

(Oxytocin, by the way, is also one of the medications utilized to induce labor in pregnant people! It naturally helps with contractions but also that post-birth bonding.)

Sleep

This isn’t true for everyone, but orgasms can help with sleep issues, helping us to fall asleep more quickly.

Heart and brain health

With all those hormones being released, this can have a positive effect on your health! Some of these hormones, like DHEA, are supposed to help boost brain function and improve heart health.

Deep breaths

Sexual activity increases better breathing habits. I also breathe better post-orgasm and don’t need to rely on my inhaler as much.

Pain relief

Oh yes, this is my favorite part of orgasms – they can help to relieve pain! This is due to the body releasing oxytocin and other yummy happy feels.

Those whole post actually came about because I had a migraine starting. Instead of hiding like I might have done in the past, I took an extra non-steroidal anti-inflammatory, popped on my Axon Optics, enjoyed two orgasms, and took in a lot of caffeine.

Two hours later and I’ve avoided a full migraine.

Yay orgasms!

 

A Directory of Sex and Disability Speakers

I wish this wasn’t a conversation we had to have in 2017 but, alas, it is.

Many conferences and talks centering on disability don’t include those of us with disabilities. This is especially true when it comes to sex and intimacy centered spaces.

One of the most difficult parts of being a part of a marginalized group like having a chronic illness/pain condition/disability is that we are so often talked *about* without being included in on these conversations. This violates the basic ‘Nothing about us without us’ mantra that so many activists in the disability/illness/pain realm live by. It also serves to eliminate intersectionality when it comes to our experiences.

One barrier to our involvement in conferences and events is that there isn’t always a lot of press around the work we do; additionally, there isn’t one single place people can go to find us.

My pal Kate McCombs and I are aiming to change that. We are creating a directory of people with disabilities who speak on sex, sexuality, and other intimacy-related topics. You can check out those who have already added their names here. If you’d like to add your name, please fill out our Google Form.

Featured on Andrew Gurza’s Disability After Dark Podcast

I am so beyond excited to share Andrew’s work. He is my cripple from another nipple and we’re practically in work-love.

Andrew runs two podcasts. Disability with Drew covers disability culture and really what types of things those of us who identify as disabled face on a day-to-day basis. Disability After Dark is all about

Andrew recently had me on Disability After Dark – come check out the episode here or on your favorite podcast streaming app.

Make sure to check out past episodes because both of these podcasts are amazing. You can also pop over to Patreon to support Andrew’s work.

Episode 8: Niko

Today is the Day Without Immigrants and, as such, it’s time to hear from an amazing immigrant – my friend, Niko. Originally from Trinidad & Tobago, Niko is an undocumented immigrant. We talk mostly about myths regarding undocumented people, politics, and empathy. We also touch on the difficulties of living with chronic illnesses.

Take a listen on SoundCloudiTunes, or your favorite podcast app.

Niko and I talk a lot about empathy. Below are some great resources for empathy work:

Please remember that I’m looking for volunteers for transcriptions.

As a note: our chats are now Thursdays at 8 pm Eastern (New York City) Time | 7 pm Central (Chicago) | 6 pm Mountain (Denver) | 5 pm Pacific (Los Angeles) | 4 pm Alaska | 3 pm Hawaii. A new time will be coming soon earlier in the day for those who cannot make it during the above times.

Chronic Illness & Intimate Relationships – An Interview with Dr. Logan Levkoff

This piece comes from one of my favorite people, Mariah Leach of From This Point. Forward. Mariah is one of my favorite people and, indeed, one of my favorite partners in crime.

For the past few years, I’ve been writing openly about the impact of chronic illness on intimacy and relationships – so I was excited when I was recently offered the opportunity to interview Dr. Logan Levkoff. A recognized expert on sexuality and relationships, you may have seen Logan on the reality show Married at First Sight. Logan is dedicated to perpetuating healthy and positive messages about sexuality and relationships, and she recognizes the added struggles a chronic illness can bring to the table.

Mariah: If one partner has a chronic illness, what can a couple do to try to address the diagnosis as a team? What if your partner is having a difficult time understanding or accepting the impact of your diagnosis?

Logan: I think it’s sort of funny – we share our bodies with our partner, but that doesn’t mean we feel able to easily talk about the feelings that go with that experience. None of these conversations are easy – they don’t come naturally – but we have to have them. “Communication” as an answer to this question is not the most novel idea, but there’s really no other way to do it. Your partner doesn’t understand what you are experiencing and vice versa, so we have to find ways to explain what we are experiencing. Listening is important too, as is considering your partner’s needs. Try turning the question around and asking your partner what they are experiencing, without making any assumptions.

Mariah: I think it can often be really difficult to consider your partner’s needs and experiences when you are really hurting or suffering yourself. What do you recommend if you are struggling to make room for your partner’s perspective?

Logan: It’s definitely a delicate balance between explaining your own needs and listening to your partner’s needs. If you mess up and end up in an argument instead of a conversation, you can always go back after the fact and say to your partner “I really wasn’t feeling well when we had that conversation, but that doesn’t mean what you are thinking is not important.” If you really struggle in this area, it may also be useful to have a third party, such as your healthcare provider, offer some information to your partner about how your chronic illness may impact intimacy. For example, after a woman gives birth their partner may not understand why they can’t be sexual, and a doctor can help explain the issue. A third party can also moderate the discussion, give information, and give your partner some idea of what to expect.

Mariah: That’s a good suggestion, but to get that sort of help from your doctor you have to bring up the issue in the first place. Do you have any advice for making it easier to talk to your doctor about this sensitive topic?

Logan: It really depends on the relationship you have with your doctor. If you’re uncomfortable, sometimes it can be easier to call the office in advance, tell them you’d like to talk about X subject, and ask them to make a note in the file to reserve the time during your next appointment. When you go in for your appointment, it may also help to have a list of questions. Even if you don’t really need a list it can serve as a psychological crutch to look down and read something off a piece of paper, instead of asking directly.

And you can always lead off with “I don’t know how to say this, but I need some guidance.” Nurses and nurse practitioners can be a good starting point too.

Mariah: So once you’ve gotten some advice from your doctor and figured out how to communicate better with your partner, what if you just don’t feel sexy? How can you learn to love your body in the face of chronic pain or in spite of the negative side effects from treatments?

Logan: We all have moments when we don’t feel our best, and it’s often because we have this idea that someone else sees us in a different way. There are times when we don’t give ourselves enough freedom to think about what really makes us feel good – sexy, fulfilled – beyond the role of being someone’s partner. As a starting place, ask yourself the question “when do I feel my best? What puts me in a space that I can let some of my worries go.”

Mariah: Do you have any advice on dealing with guilt over the impact your disease has on your partner’s life?

Logan: We often feel guilt because we feel like we are depriving our partner of something – and we tend to assume that we know how our partner is feeling about the issue. It’s about saying to your partner “I really want for us to have the most fulfilling intimate life possible. I’m sorry there are times we can’t get there – but what can we do together so we feel connected even when I’m not able to be physical with you?” We often avoid these types of conversations because it feels safer, but being vulnerable and owning it shows your partner that the issue is important to you. It may not be the exact journey you expected to be on, but it can still be fulfilling.

Mariah: What advice might you give to the “healthy” partner in a relationship facing chronic illness?

Logan: Honestly, I think these general thoughts apply to everyone. We often have this fairy tale idea of how relationships are supposed to look, act, evolve, etc. Get rid of that. Chronic illness or not, no one lives that life. Expectations don’t serve our purposes – for anyone. I’d also encourage the “healthy” partner to acknowledge that the situation may not be what they imagined, but that just means we have to change our definition of what fulfilling means. There are plenty of intimate things you can do to feel fulfilled – it doesn’t always have to be intercourse. Numbers and statistics and measuring seems to count, like we may see on the cover of a magazine, but the reality is that life isn’t supposed to be like that. The “healthy” partner could start by saying something like, “tell me how your pain makes you feel so I can understand where you are coming from and help you manage that.”

Mariah: Finding different ways to maintain intimacy despite pain is super important, but it can also be a challenge. Can you recommend any toys or props you think would be particularly useful for maintaining a healthy sex life while living with chronic pain?

Logan: I like to say “enhancements” rather than “toys or props,” because we are looking for something to help enhance the experience, not to replace any part of it. My advice would be less about particular products and more about things to look for. Realistically, texture can be an issue of you have sensitivity, so it may help to consider the size and weight, shape, and range of speed and pressure. Also volume, especially if you have small people in the house! Online research can be helpful – there are sites that have great reviews and people you can chat with. Or, if you have the ability, you can visit a store and feel the products yourself and ask questions. Keep in mind that what is good for one person isn’t necessarily good for another.

Mariah: Speaking of small people in the house, what advice do you have for women trying to balance chronic illness and an intimate relationship and motherhood?

Logan: Don’t expect it to be perfect and graceful all the time. Women can have and do it all – with the caveat being that we won’t do it all perfectly all of the time. It’s ok to admit that you have limitations – that doesn’t mean you don’t love your kids or partner. But you end up hurting yourself and feeling overextended if you don’t recognize your own limitations. Primary caregivers for small people also end up being touched and groped all day long, and when a partner comes home and touches you the brain doesn’t necessarily read it the way the touch was intended – it may seem like one more hand that wants something. But your partner, who may have had no physical affection all day, may see it as a rejection. We need to say “I love you, but I need you to know my brain is reading this as a demand.” This comes back to the importance of communicating our experiences to each other.

Mariah: Communication is certainly key to having a healthy intimate relationship despite chronic illness. I think you’re right that it’s important to remember that those conversations may not be easy – but they are necessary. Thanks so much for taking the time to chat about this subject!

You can find Dr. Logan Levkoff on Twitter, Facebook, Instagram, Huffington Post, and on her website. She is also partnering with Pfizer to talk about the emotional effects of living with arthritis – like how it affects sex and relationships! Visit Arthritis.com to learn more.