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How I Learned to Navigate Dating While Managing a Chronic Illness

Living with a chronic illness shouldn't mean giving up on love and intimacy.

by Jasmine Ivanna Espy
February 22, 2021 | Love
Illustration of Black woman in white blouse with white earrings on, dating with illness, Rewire
Credit: Alexandra Zheleznova // Adobe

I've been in many "situationships" in my life, but I've never really dated anyone consistently or seriously. 

This is because of the nature of my chronic skin condition, hidradenitis suppurativa, or HS for short. HS causes boils, which often appear in the armpits, groin, buttocks, chest and back.

On one date in particular, I remember going out despite having one of my biggest flare-ups in years. It was hard for me to walk, let alone sit, and yet I still went on the date. 

I felt foolish. All I wanted to do was curl up in bed and never leave the house again.

The romantic partnership didn't blossom. Through therapy, I later learned that I pumped the brakes on the relationship because I felt as though my illness would be a burden. 

I couldn't imagine how anyone else would feel carrying this weight, and I constantly ruminated on how a love interest would react when I revealed my scars, open wounds, tracts and boils. 

How can someone like me open themselves up to intimacy? When is it appropriate to talk about a chronic illness? What happens if we get rejected?

One thing I've learned is that chronic illness isn't the end of intimacy, but the start of a new path for exploring what partnership looks, feels and sounds like. 

Here are a few ways to navigate dating and intimacy while healing your physical and mental self.

Allow yourself to grieve

The first step to entering the dating scene and learning to be vulnerable with a partner is allowing yourself to grieve what you've lost in life because of chronic illness.  

"Being able to grieve what (you) no longer have is a part of acceptance," said sex therapist and licensed social worker Dr. Erin Martinez. "With grief comes allowing yourself to be angry, allowing yourself to feel like it isn't fair."

For me, this process involved recalling how I felt and acted before sixth grade, when I got my first boil. 

It's hard to relive this experience, because I became chronically ill at such a young age and felt like I never really got a chance to be a child. I was always in pain, depressed, anxious or in the hospital.

Express your loss

Exploring this space of loss can take a lot of mental and emotional energy. 

One technique I've used to unpack and process my feelings around chronic illness is expressive therapy. This could involve acts of writing, drawing, journaling, theater or other arts to explore one's experience.

"Being able to incorporate elements of art is really ideal … (for) thinking about the changed body and concepts of before and after," Martinez said. "Acceptance is really about embracing who you truly are."

Channeling my experience through art didn't suddenly make things better, but it did help me become a bit more comfortable with my story and my experience. I was able to start "putting myself out there" by making dating app profiles and sliding into the DMs of crushes. 

Treat your body with kindness

One thing I want to make clear is that acceptance isn't unrealistic optimism. It's about embracing all sides of ourselves — the good, the bad and the ugly. 

Connecting with HS patient and trauma coach Julie Fernandez opened my eyes to facilitating acceptance through mindfulness and gentleness. 

"If you have open sores or wounds, and you're dressing them, are you doing it nicely? Are you putting that ointment on nicely or are you so angry at the fact that you have to do it?" said Fernandez, pointing to the need for a positive mental attitude when treating symptoms of chronic illness.

It's difficult to ground myself in my body, but doing so has enabled me to show myself the adoration I know I deserve. Learning to do this can be a healthy way of realizing that everything you need and want is already inside you. 

Push past the fear of rejection

I've found that I can be fearless in asserting myself intellectually and creatively, because I know I am intelligent. But asserting myself intimately or romantically is challenging.

The media I've consumed has made me question my desirability. I've never seen a woman who looks like me on the big screen or in magazines. Because I didn't look like stars with "socially acceptable" bodies, it made me think that I must not be sexy. 

Overcoming this mindset required a ton of reprogramming. I've been able to shift my perception of beauty and desirability by following women who embrace their illnesses, disabilities and bodies, like Aaron Philip, Lizzo and Ericka Hart.

According to Fernandez, we can be our own worst critics by rejecting ourselves before anyone else has the chance to. 

"It's my own shame and my own doubt that's coming up because I am my worst critic. I say all of this nasty, mean stuff to myself, and that's what I imagine the other person is going to say," Fernandez said. 

"That is where my fear comes from, but when I accept myself and am kind to myself, then honestly it doesn't matter what the other person thinks or says, because I am OK with me."

I've also learned that rejection can often be a form of protection. Frankly, if someone doesn't want to be with me because of my sagging skin, HS or eczema, then they weren't meant for me. Acknowledging that doesn't take away the sting to the heart, but it does lighten the emotional load a bit. 

Opening up with your partner

If you're entering a committed relationship, talking about your chronic illness with your partner can be difficult

Rather than diving in completely to your narrative, Martinez suggests starting with something that feels vulnerable but isn't about your chronic illness.

"You might give them something that's not necessarily negative but vulnerable, (to) see if you can share that with them and get back the emotional response that you need," she said. 

"What can also help is letting your potential partner or significant other know what your expectations are when you're vulnerable with them."

One way to prep your partner is by saying, "I don't need a lot of questions right off the bat," or "I don't want you to feel bad for me — here's what I would like for you to do." 

Find your power

Finding ways to harness my power as a Black queer woman living with a chronic illness has been complex, yet rewarding. 

I used to think I should just settle, because I might not get another chance to date or be in a relationship. But you give your power away when you just accept any old thing, rather than setting your own standards and measuring your experiences against what you desire. 

You have the power to select and reject. This can be done through writing down the characteristics you want in a partner. What do they act, sound and look like? How do they treat you when you are at your worst? Do they show up for you in your successes? 

Writing down how you want to interact with a potential partner can also clarify the expectations you have for yourself. And if the person you're currently dating or are in a long-term relationship with doesn't meet these standards, it might be time to go back to the drawing board. 

Looking back, I've realized that when I wasn't actively working on my healing and pain management, dating was nearly impossible. Chronic illness flare-ups can be unpredictable.

"No one is going to be thinking about sexuality at that point — you're just trying to get through the day," said dermatologist Dr. Raja Sivamani.

Accessing your power to find love and engage in intimacy is also about finding value in yourself beyond the superficial. 

"It's important for people to realize they're more than their skin," Sivamani said. "If they view themselves any less worthy or any less able to be socially interactive, it's not true."

Jasmine Ivanna Espy
Jasmine Ivanna Espy is a journalist turned filmmaker working as an executive assistant for talent agencies and production companies within the film and television industry.
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