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What Dating Looks Like When You Have A Long-Term Illness

"It feels like when you're sick, you spend a lot of time being cautious in who you show the realities of the crap of the illness to."

Women's Health

Until very recently, I hadn't been on a date in a while. I'd been asked on them, I'd flirted, I'd kissed – but committing to anything else was too hard. I'm in recovery from anorexia, and it takes over my life – which includes dating.

To start, a lot of dating revolves around food or drink. I'm very specific about what I will eat, and have to check out restaurant menus in advance. I often ask for adaptations. It's hardly the laid back and liberal approach I like to present to the world.

Body image is something that many women struggle with, but is exacerbated by an eating disorder. I don't really have dysmorphia – I know I'm underweight – but I still struggle with what other people will think.

And then there's the fact that I have to constantly be planning for my next meal or snack while thinking about not doing too much activity, at the same time. It's exhausting.

For the moment, it is recovery, in all its facets, that is a big part of my life.

So, avowedly spinster, potentially more out of self-protection than anything, I was rather blindsided when I met a sweet, funny, and supportive guy who has signed up for the good stuff and the hard stuff. He reassures me, helps with meals, calms me down when I get anxious, keeps me warm and makes me feel safe. We also like to dance around the living room, are big fans of exploring old buildings, can nail a newspaper crossword, and spend a lot of time laughing.

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But it's not easy - dating with a long-term illness is hard. And it's an issue that people with many different illnesses face.

Helen suffers with chronic pain all over her body, which affects all aspects of her life – mobility, cognitive function, and emotions. Whenever she is online speaking to someone new, she tells them that she has to walk with a stick. Quite often this is the end of the conversation, and people simply stop talking to her.

She recently went to a 'traffic light' party and was pointed at and called out by other people in the room. One man said to her, "You are limited, what are your solutions?" – as she couldn't travel far to see him due to exhaustion. "This made me feel inferior and an inconvenience," she says.

And with chronic pain, everything hurts – including sex. She explains that, "I've never met anyone who cared enough to be attentive and gentle enough to make it enjoyable."

This knowledge is exacerbated by her body dysmorphia and feeling that she isn't attractive enough for anyone to like her.

A girl I knew in recovery from anorexia once got all the way into bed before the man she was with stopped because she was too small, and he worried he would break her. At this point, she was what is deemed a "healthy" weight, showing how arbitrary and low these boundaries are set.

One thing that is really important is being honest.

I told my boyfriend about anorexia recovery almost immediately, as he had asked if I wanted to go out for lunch. The conversation then evolved into things he could do to help me – knowing my meal plan, nudging me to choose the best choices for recovery, planning in advance – rather than put us in an awkward situation.

But knowing when to have that conversation is hard. Karen has Chronic Fatigue Syndrome. She is very cautious about who she speaks to. "It feels like when you're sick, you spend a lot of time being cautious in who you show the real realities of the crap of the illness to, and so it's a massive vulnerability to have to bare your deepest insecurity of an illness, very quickly. To let down that mask even a little bit, is a real risk. There's no way around ripping that plaster off very soon, and so for me I'd probably rather steer clear of the situation where I have to do that, for fear of rejection because of it."

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"It feels like when you're sick, you spend a lot of time being cautious in who you show the realities of the crap of the illness to."

She finds that it often comes up when she is asked that killer question, "What do you do?" and she has to explain that she is off work long-term due to illness. As well as closing that conversation down, it makes her struggle with feelings of self-worth "and not wanting to be a burden physically and financially, as well as not wanting to appear weak."

Most of the people that I've spoken to about this are in their thirties. There's an extra pressure with dating in this decade, because, for the most part, people are looking for something long-term.

As Karen says, "When I think about marriage and stuff even though it's the whole 'for better or for worse, in sickness and in health' thing, it's the struggle of feeling like, 'Well yes, that's true, so if I became chronically ill after we were married that's when that would kick in, but to invoke that before you even begin, is too much of a price to ask someone to pay.' And although dating is just dating and doesn't necessarily even get to a point of long term, let alone marriage, it's always that looming feeling in the background."

But it's a good sign if you find someone willing to take on the illness challenge. My boyfriend has said that he wouldn't be putting in all of this effort if we were just a short-term fling. Every time he makes me a dinner that stretches me just enough towards recovery tomorrow, whilst feeling safe enough to deal with today, I know that he is reaffirming that he cares. Because it's not just me who faces challenges – so does he. He has had to have a much more structured approach to eating, with regular meals and snacks, so that he's always there to support me. Language is a big thing, as even the slightest slip such as calling something "bad" or commenting on the size of a meal can send me into misery or trigger of eating disorder behaviors.

Dr. Michelle R. Hannah says that the best time to share is when you both think that you are on the same page in regards to where the relationship is heading. She has worked with lots of cancer survivors on rebuilding their lives, and has also suffered from cancer herself. She was lucky that when she met her husband, she had been through a process of self-healing by spending time working on her own physical and mental health. "We had the conversation early on because we truly knew where we were going early in our relationship. It was a tough conversation but his compassion and commitment made it easier. Knowing we could both be transparent with each other helped immensely on the days that I was at a pain level of nine on a scale from 1 to 10. After four major procedures before we were married, I knew that we were both committed to the traditional wedding vows before we took them. Chronic illness, or recovery from one, is one of the toughest challenges that one can go through but when you have someone who is dedicated to assisting you to achieve optimal health and love you through it, [it] makes the journey so much more meaningful."

"Chronic illness, or recovery from one, is one of the toughest challenges that one can go through but when you have someone who is dedicated to assisting you to achieve optimal health and love you through it, [it] makes the journey so much more meaningful."

Clare has also been diagnosed with Parkinson's for just over two years and has found that it has really knocked her confidence. First dates are stressful and full of anticipation anyway, but Clare struggles to even get dressed for them. "Things can be going well," she says, "but then I will start trembling and feel self-conscious and stupid. My left arm hangs in a way that I think makes me look very sick. I am consciously aware of it, and will spend all my time worrying about it. So then I can't focus on and enjoy the date."

That's one of the key things about dating when you have a long-term illness. That illness is always present, and it's very difficult to be 100% focused on the date or relationship in general.

Self-esteem is one of the biggest casualties. It's this that stops Karen. "I know that I struggle with internal dialogues of self-worth with having a chronic illness and the thought of dating - the battle of feeling like no one would want to buy into that from the beginning."

When your illness takes over you everyday life, it can feel like you've got nothing else to give. I've felt like that too. Why would anyone want to put up with the challenges that illness and recovery come with?

Because they care. And that's what all relationships are about: A mutual caring, respect, and delight in each other's company. As important as self-care and management strategies are, and as big an issue as illness is, it's not everything.

You're an individual with a lot more to give than just a diagnosis, and there are people out there excited about getting to know all of you, the good, difficult, and shades of light and grey.

Featured image by Getty Images

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
Sign up

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In xoNecole's Our First Year series, we take an in-depth look at love and relationships between couples with an emphasis on what their first year of marriage was like.

It was a cold winter night in Chicago, more than a year ago. Your girl was scrolling through the fifty-eleven million options on Netflix to find something interesting to watch. I spotted this new show, The Circle, and have not looked away since. Produced by Studio Lambert and Motion Content Group, it premiered in January 2020 and has become my new favorite type of game show. Hosted by Michelle Buteau, The Circle is about contestants who are isolated in their own apartments and can only communicate with others via an online social media platform.

On season 2 of The Circle, the world fell in love with DeLeesa, the contestant who would eventually be crowned winner of the cash prize. She won the game by playing as a single dad named Trevor, who is actually her husband. As a true fan of the series, I figured it was only right to sit down with DeLeesa and Trevor to get the deets on how marriage has been for them IRL. So, let me take y'all back into time real quick, to the beginning of their love story.

It was 2007, and DeLeesa was starting her first day of school as a college freshman. She was getting adjusted to her new dorm and was introduced to her new resident assistant, *drum roll please* Trevor St. Agathe. They quickly became friends and Trevor helped DeLeesa find different activities around campus. After a year, they decided to take things to the next level.

Now, 14 years and two beautiful children later, the married couple have been focusing on doing whatever it takes to create the best life for their children. Since college, the power of commitment and open communication is what has kept DeLeesa and Trevor by each other's side.

One thing that we can all learn from The Circle and social media in general is that everything is not what it seems. When I connected with the couple, DeLeesa wanted to get the story straight about her and Trevor's love story. "I feel like people look at couples on social media and they think that things are perfect when that's not true. We went through stuff, too. We just figured out how to overcome it and move together as a unit."

In this installment of xoNecole's Our First Year, Deleesa and Trevor share how marriage is about work, navigating through the ups and downs, and prioritizing family. Here's their story:

How We Met

DeLeesa: I got to school early because I was starting [college] a semester late. I met him, we became friends, and I developed a little crush on him. One day, we were hanging out in his room and he just didn't want me to leave (laughs). So we were messing around for about a year. Exactly one year later, I told Trevor that I am not going to keep doing this unless he becomes my man. If he didn't make me his girl, then we were done. (Laughs)

Trevor: I tried to ride it out as long as I could (laughs). At the time, I was thinking, since I'm still in college, I shouldn't be tied down. But I knew that if I didn't make it official, she was going to leave. So, she was right, and we took it to the next level.

First Impressions

Trevor: I thought she was absolutely beautiful. She was pretty and the new girl on campus. So I knew she was going to get lots of attention. But I didn't want to be on that with her, so I continued to just be a stand-up guy. At first, it was the normal student-and-RA relationship. She would ask me what activities she could do on campus and I gave her a few suggestions. For a few days, we continued to hang out and I started to realize the chemistry we had between us.

DeLeesa: When I first met Trevor, I wasn't even thinking about going that [relationship] route with him. I was new to the school and I just wanted to be his friend. But because we shared bathrooms in the dorm, this man would just walk around in his towel sometimes. I couldn't help but notice him more after that. I just thought 'He is fine!' (Laughs) He was so nice and he never pressured me into anything, but, he knew what he was doing.

Favorite Things

DeLeesa: I love that he has unconditional love for me. I feel like that no matter what I do or no matter how mad he gets, he is still always going to be by my side for anything that I need. We have been together for a long time. Even though we had breaks in between, he has always been there for me.

Trevor: It's not just one thing for me, but I can sum it up: DeLeesa is everything that I wish I was. She is very much not afraid of what other people think and she is very determined to go after what she wants. She has that go-getter mentality and it is so attractive to me.

"DeLeesa is everything that I wish I was. She is very much not afraid of what other people think and she is very determined to go after what she wants. She has that go-getter mentality and it is so attractive to me."

Wedding Day

Trevor: On our wedding day, I was crying like a baby when I finally saw her. That is my fondest memory of that day: seeing my wife-to-be from a distance and instant water works. (Laughs)

DeLeesa: I really enjoyed our first dance. Our wedding was pretty big, and I planned the whole thing. I was very hands-on and it was hard for me to just have a moment and be present. But when we had our first dance, that was our time to just be with each other and not worry about anything else. It really hit me that we were married at that point.

The One

DeLeesa: Well, the thing with Trevor and I is that we broke up a lot. We reached nine years of being on and off. By that time, we said to each other that this would be the last time we were going to break up. We were going to try our best to do everything that we could to stay together. And if we didn't work out, we were going to go our separate ways. For me, I really wanted us to work because I did see him as my future husband and my children's father. So it was the conversation we had to not break up that was my "you are the one for me" moment.

Trevor: It was something that I always knew. Young Trevor would say, "If I had to get married, this is who I want to marry." When I knew it was time to take things more seriously with her, it was after we had that conversation. Another confirmation that DeLeesa was the one was when we had to move to Canada from New York. I thought to myself that this woman must really love me to pack up and move to another country for me. This woman trusts me so much and she is my forever.

"The thing with Trevor and I is that we broke up a lot. We reached 9 years of being on and off. By that time, we said to each other that this would be the last time we were going to break up. We were going to try our best to do everything that we could to stay together."

Biggest Fears

Trevor: The questions that popped into my head were, "Can I do it?"; "Can I be a good husband to her?"; or "Was I truly husband material?" You can't take a test for that or study to get those answers. You have to just do it, apply your morals and values, and do the best you can. What has helped me with this is continuing to reaffirm how we feel about one another—affirmations that let me know that she is happy and I am doing a good job. Marriage isn't that much different from what we have already been doing this entire time. We just wear rings.

DeLeesa: My biggest fear [is related to the fact that] I am a very independent person, [so] if I do not like something, I can be out, quick! So with me, I questioned if I could stay put and fight through the bad times within a marriage. I would question if it is worth sticking it out since this is a lifelong commitment. What has helped me get through that is reminding myself that I can still be independent within my own marriage. I can still do things on my own and still share my life with someone I really care about.

Early Challenges

DeLeesa: I feel like I have been really good at keeping my relationship with my friends balanced with my partnership with Trevor. So when we first got married, my personal challenge was me trying to juggle between being a good wife and still making time for my girls. I really didn't want to lose sight of who I was in the process of marriage.

Trevor: My work at the time forced me to travel a lot. So when you are in that honeymoon phase, it's important to have quality time together. It was hard with my job to enjoy life together as a married couple in the beginning. Yes, we have been together for a long time. But this was different. Not being around my wife as much as I wanted to was really hard for me and the both of us. Our communication started slacking and we definitely struggled during that time.

Love Lessons

Trevor: There's two lessons that I have. One lesson is that I am a husband first. I have spent a lot of time not being a husband so it can be easy for me or anyone to continue to behave that way. But my wife always has to come first, no matter what is going on in life. When you're married, you have to reinforce that. My second lesson that has helped in our marriage is making sure I do things in order to make her life easier. It can be the simplest thing, but for me, it is a huge priority.

DeLeesa: My biggest lesson is being able to learn from each other. For example, if he is doing simple things to make life easier for me, I am learning from him how to show up for him to make him happy. It can be easy to just receive everything he is putting forth, but it has to be give and take for us.

"I am a husband first. I have spent a lot of time not being a husband so it can be easy for me or anyone to continue to behave that way. But my wife always has to come first, no matter what is going on in life. When you're married, you have to reinforce that."

Common Goal

Trevor: To do everything in our power to ensure that our girls have the best possible life. Everything that we do at this point is for them. Before children, I may have moved slower working toward certain things, but there is definitely an added fire on how we approach things because of them.

DeLeesa: I agree. The number one goal is to be the best parents we can be. We want to set up generational wealth and we want them to be culturally aware. We want them to grow up and be proud of everything we have done for them.

Best Advice

DeLeesa: My advice would be don't go looking for advice, honestly. A lot of people are going to have an opinion about your life and sometimes that may not be the best for you. People can have different intentions and may give you the wrong advice. So I feel that if you need to vent, then yes, have someone to confide in. But don't take their word as facts. Try to figure out your marriage for yourself. Stick to your intuition and what you want to do, no matter if you are being judged for it.

Trevor: The things that matter are to be patient, listen close, choose to be happy, and love hard. I also think when people come to terms with the fact that marriage is work, then it is more possible for people. There are honestly more things to be happy about with the person that you marry. You have to keep all the things that you love about that person at the forefront to get you through. Once you do that, you will be fine.

Follow Deleesa and Trevor on Instagram @leesaunique and @trev_saint and their family page @itsthesaints.

Featured image via Instagram/Leesaunique

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