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Dating, Sexuality, and Body Image

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For more details on Body Image,

we invite you to check out our PAC-created toolkit.

BodyImageToolkit.PNG

Content warning: This content discusses topics related to sexual activity and relationships

Overview and Takeaways

  • ​IBD really impacts body image. Patients will go on medications and treatments that can rapidly change their physical appearance (prednisone, tube feedings, etc.). As a result of flares or surgery, patients may lose weight and have a hard time gaining weight. On the other end, medications and chronic pain can make patients gain weight, and overweight/obese bodies are highly stigmatized. In general, don't talk about appearances and weight unless necessary, and respect patients' boundaries.

  • Not all patients are heterosexual or cisgender! It's important to include inclusive language and mindsets in healthcare. These identities can become a challenge when navigating healthcare if not respected and validated.

  • Sexuality and gender identity need to be talked about more. These identities can have a big impact on the mental and physical health of patients. Additionally, patients might not know what questions they should be asking about how their sexuality/gender identity impacts their care, so it is essential for providers to be thinking about these things.

  • General recommendations for providers: talk about these topics with sensitive, inclusive language. Respect patients' pronouns, sexuality, and feelings

How has IBD impacted your personal body image? Or, how has societal expectations of body image affected your own body image?

  • "It has made me skinnier 100% but I think people always look at me and say "Wow you are skinny I wish I was like you" or something along those lines while I actually wish I had some more weight on."

  • "Yes it has the weight gain and lost"

  • "IBD has impacted my body image really strongly. Especially since I started getting sick in my early teens (11), I was already dealing with puberty and other body stuff. Loosing huge amounts of weight, and then gaining it back quickly with prednisone was really hard. I felt incredibly self conscious all the time, either because I was 'too skinny' or I had 'prednisone moonface.' Fluctuating weight has made it really hard for me to feel a consistent sense of self/identity. I also struggled a lot with different medication side effects (acne, rashes, flushing, etc.), which have made me very self conscious of my skin. "

  • "It's hard to not see disabled/chronically ill folks represented in the media. We get so little representation, and when we do, it's romanticized (or super triggering!). In general there's a lack of diverse bodies being represented, though it's started to get a little better over the last few years."

  • "Yes, definitely. I went through a lot of body changes over a relatively short period of time. Prior to diagnosis, I was so underweight you could see my bones through my skin, and about a year later I had gained a ton of weight and developed moon face after being on steroids and being on EEN with a feeding tube. My body since then has lost some of the excess weight just on its own, but I've definitely developed some body dysmorphia due to all of these sudden changes. In addition, society is always pushing a certain image of what healthy, fit bodies look like and that has influenced me to a point where sometimes I feel that I don't line up with that and it can affect me mentally."

  • "I was diagnosed at a young age and was always the small kid growing up. I hit puberty late compared to most of my friends. So when I finally grew and put on weight it was really good to be healthy and able to do that, but it was also hard to be comfortable with my body change. I wish there was more support from my IBD care team or in general talk about IBD and body image. I was only on steroids right after being diagnosed. Because I was so young at diagnosis, I don't remember being on steroids really. But looking at pictures from this time, I don't recognize myself in some of them. It feels weird to not recognize yourself and mentally have a different picture of yourself knowing that your IBD caused that."

Do you feel that your sexuality has impacted your IBD care and/or mental health? If so, how?

  • ​"Yes it has been the reason I have dated girls instead of boys."

  • "Yes! Learning to be open about my health conditions/IBD actually helped me come out to myself (and later others) in terms of my sexuality! I think I needed to figure out/accept that aspect of myself (as someone who is chronically ill) to be able to see the rest of my identities more fully."

  • "It's definitely made it more tricky navigating healthcare, because it's not always clear which doctors will be supportive. The assumption is always that all patients are straight, and often the questions doctors ask reflect that, which can put us in awkward positions where we need to 'out' ourselves."

  • "Yes, mostly because sometimes when I'm having IBD symptoms I don't feel as attractive and that impacts my sexuality. In general as well, I have trouble feeling comfortable in my body s a result of my IBD and years of chronic pain. I've been trying to meditate with guided mediations but it makes me uncomfortable when I try to focus on how my body is feeling."

What do you wish you knew about how your sexuality/gender identity impacts your IBD care/health?

  • ​"That love happens and it doesn’t matter how it happens."

  • "Anything, honestly! I've literally NEVER heard about anything about it!"

  • "I really wish it was something that was talked about. A lot of times, patients might not know what questions to ask about how our sexuality/gender orientation impacts our care. It would also make me feel so much more comfortable if my providers didn't assume my sexuality or gender identity because not every patient is straight and cisgender. I wish I knew the questions to ask."

Dating

Overview and Takeaways

  • ​Having IBD can make it feel hard to open up. Some patients may experience stress and anxiety over talking about their disease with romantic partners. Good partners will be supportive and caring!

  • Being immunocompromised may make some patients hesitant to have sex. The risk of STIs/STDs may deter patients from engaging in sexual activity, which can be stressful and upsetting.

  • Supportive partners are great! Listening to patients experiences, understanding limitations, and learning about how IBD impacts patients' are great ways to support a romantic partner with IBD.

  • Providers should mention sexual activity with adult, and older pediatric patients. Many patients, including older pediatric patients, engage in sexual activity. Trying asking parents (for older pediatrics) to step out of the room. Providers can bring up the topic and see if their patient wants to talk about it or if they have any questions. It is important for providers to let their patients know how medications, treatments, etc. may impact their sexual activity, as the consequences of not having these conversations may produce negative health outcomes. 

Does having IBD affect how you feel about relationships/dating? How does it affect your openness/communication?

  • ​"Yes it makes it hard to open up to people I’m talking to."

  • "Definitely! I used to be really uncomfortable starting relationships because I wasn't sure if/when to tell partners about my IBD/health conditions. It honestly took some experimenting to figure out how, when, & in what situations to talk about health stuff. It was helpful for me to go in steps - mentioning something vague at first, then giving more details as necessary. For me, it helps to just mention things in passing, and keep the conversation light/jokey (rather than sitting someone down and having a 'talk' with them)."

  • "Absolutely, there is always some anxiety when I open up to people about my IBD because of how they will react but the best advice I've ever gotten about relationships/dating is that if they are not understanding and supportive of your IBD, then they aren't the right person!"

  • "I am pretty open about my IBD. All of my close friends know so if I am dating someone, they will probably already know or learn very quickly. I would rather tell someone early on. I also have to communicate about my health needs with friends and someone I'm dating because of dietary restrictions if we go out to get food. It also tended to come up in high school because of missing school for doctors appointments or not feeling well, that my friends if they didn't know would ask/worry about where I was."

Does an immunocompromised state affect your thoughts/actions related to STIs/STDs? What is important to you when considering this with your partner(s)?

  • ​"I do. I feel I can’t have sex because of my immune system  being low."

  • "Yes, I am definitely more wary of STIs, and take testing really seriously. I make it really clear that I'm immunosuppressed, and any infections can be extra dangerous for me, so I'm really firm on boundaries around testing/protection."

  • "I haven't actually thought about it, but this emphasizes how important open and honest communication is, for everyone, but especially for those with chronic illnesses!"

What are things your partner does/says that have been helpful for dealing with your IBD? What would you like a partner/SO to do that would support you and your IBD?

  • ​"He always ask what I need and how to help when I’m sick or in a flare."

  • "I think just being able to be open, and joke about some of the (potentially embarrassing, but totally normal) things that our bodies might do. That goes for IBD, but just generally as well. Anyone that won't laugh at a fart joke isn't for me :) "

  • "It's also so important to have someone who's just there alongside you - they don't need to have all the answers, or be able to 'fix' anything. Just being there and being willing to be accommodating and flexible if plans change or someone isn't feeling well."

  • "I would like my partner to want to be educated on IBD, that would mean a lot to me if they actually tried to understand my disease better since it is such a big part of who I am. I also really appreciate people who think ahead about my dietary restrictions and keeps that in mind when planning things!"

  • "I think asking questions and learning how it affects me day-to-day is helpful. Also I really like it when they are there to listen when I want to talk about my IBD. It's also important to me that they understand and don't make me feel bad if I can't do something, am extra tired, or don't feel great that day."

What do you wish your doctors would have told you about dating (and sexual activity) with IBD?​

  • ​"That it’s okay, it will all work out, in the end love happens to everyone"

  • "I wish they'd talked to me about any of it! The only things that were ever mentioned was that if I ever got pregnant, I'd need to stop the medications I was on. Even that felt awkward though, because I'd only see them at the infusion center (surrounded by other patients and my parents)...it's definitely a conversation that needs to happen in a place where patients actually feel able to ask questions."

  • "I wish I'd been told how the medications I was on would make it really dangerous if  I got pregnant. I feel like there wasn't any conversation about IBD and sex while I was in pediatrics, even though I was 18+. I think it's better to talk about it even in pediatrics, because the alternative is patients engaging in risky behaviors."

  • "I'm not sure actually."

  • "I wish my doctors just brought it up and asked if I wanted to talk about it or if I had any questions. I think that would have made it more casual, comfortable, and also my choice to lead the conversation if I wanted to have it."

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