Dating and relationships

Ayeesha says…

It can be difficult when explaining EDS to new people as most people have never heard of this condition let alone all the symptoms it comes with. In my opinion the best thing to do is not be ashamed and openly tell people as the more people that know about EDS the better.

Making sure people have some sort of understanding on things you are or aren’t able to do is crucial because if not you may feel obliged to participate in activities that you might not feel up to doing, but when other people have the ability to acknowledge that your just having a flare up or a bad day everyone understands and no one has to feel guilty or upset. Surrounding yourself with people who understand is key, as having a good support network of people who care and listen is something everyone needs, not just people with EDS.

Dating with a chronic illness can be challenging, but it doesn't make you any less deserving of love, connection, or a fulfilling relationship. In many cases, it can actually help you build deeper, more authentic relationships because you learn early on who is genuinely supportive and compatible.

1. Be honest, but don't feel pressured to disclose everything immediately. You don't need to explain your entire medical history on a first date. Share information gradually as trust develops. A useful approach is: Early dates: "I have a chronic health condition that affects my energy levels sometimes." As things become more serious, more detailed conversations about symptoms, limitations, treatments, and future considerations can be had. You are more than your diagnosis, so let people get to know you first.
2. Choose dates that work for your body Many traditional daters assume everyone has endless energy. They don't. Consider: Coffee instead of an all-day activity A short walk with places to sit A museum where you can take breaks A movie night at home Video dates when symptoms are flaring A good partner won't care whether the date is elaborate; they'll care about spending time with you.
3. Stop apologising for your illness Many people with chronic illnesses fall into a pattern of saying: "Sorry I'm tired." "Sorry I need to rest." "Sorry I had to cancel." Of course it's polite to acknowledge inconvenience, but needing accommodations isn't a character flaw. Replace guilt with straightforward communication. For example: "I'm having a symptom flare today. I'd love to reschedule so I can actually enjoy our time together."
4. Look for curiosity, not rescue Healthy partners tend to ask: "What helps when you're having a difficult day?" "How can I support you?" Less healthy partners may either: Minimise your condition ("Everyone gets tired.") Try to become your saviour. The goal is partnership, not caregiving or fixing.
5. Pay attention to how they respond to boundaries A great early compatibility test is seeing how someone reacts when you say: "I need to leave early." "I can't do that activity." "I need a quieter environment." Someone who respects those boundaries is showing you valuable information about how they'll handle bigger challenges later.
6. Don't hide your good days or your bad days It's tempting to only let someone see you when you're feeling well. But long-term relationships need reality, not a highlight reel. You don't need to showcase your worst symptoms immediately, but allowing someone to see the full picture helps build genuine intimacy.
7. Remember that compatibility matters both ways It's easy to worry: "Will someone accept my illness?" But it's equally important to ask: "Does this person's lifestyle, empathy, communication style, and expectations work for me?" Dating is not just about being chosen. It's about choosing.
8. Talk about practicalities before they become problems If a relationship is becoming serious, discuss: Fatigue and energy management Accessibility needs Travel limitations Financial impacts of illness Future plans and uncertainties These conversations can feel awkward, but they're far easier than making assumptions.
9. Build a life you enjoy outside of dating People are generally drawn to someone who has interests, passions, friendships, and purpose – even when illness limits what they can do. A fulfilling life doesn't have to look like everyone else's. Dating tends to feel less stressful when a relationship is an addition to your life rather than the sole source of happiness.
10. Believe people when they say they're okay with it Many people with chronic illnesses spend a lot of time deciding on behalf of others: "They won't want this." "I'm too much work." Let potential partners make their own choices. Some people won't be a good fit, but many will see your illness as one aspect of who you are, not the defining feature. The right person won't love you despite your chronic illness. They'll love the whole person, including the resilience, empathy, humour, and perspective you've developed through living with it.

‘I found that my disabilities were being fetishised by some men, so I put a disclaimer in my dating profile stating something like;

‘I have disabilities, use walking aids, have Homecare etc and in no way will I allow myself to be fetishised. I didn’t chose to have these conditions, it’s not something anyone can consent to having, I am not my disabilities – don’t be *that guy*’

I found that cut down the creepy messages, though not entirely. Creeps are gonna creep, unfortunately’

‘As a student, you are always being invited to go out to this club or this party but with any sort of Chronic Illness, it can be hard to say yes if you’re really struggling.

My friend group know that I’m chronically ill, it’s something I’m not ashamed of. I’m very happy to talk about my condition as I think it’s important to educate, but it wasn’t always like this.

There’s a certain stigma around chronic illness still! Many people think chronic illnesses are something you can see, when most of the time it isn’t! I used to go out with friends and cause myself pain or fatigue by walking or doing too much! I used to ask to sit down a lot or I needed to get a drink because I felt lightheaded. I also used to cancel a lot of plans and at this point, I felt like it was time I needed to tell them and I wasn’t sure on how to do it.

I’m a much better texter than I am public speaker, so I drafted a message to my friends that night explaining that I have a condition called hEDS and explained what it means to me. I explained that I struggle to walk long distances and that I need to sit down or take breaks to have some water or to rest my legs and that some days I can’t leave my bed at all. I also linked some resources explaining the condition further in case they wanted to know further.’ Marcus

‘My biggest tip when it comes to dating with chronic illness is to be very upfront about your condition. I believe it was right after we met and before our first date that I told my partner about my conditions. Although to most people that may seem scary and like a lot very quickly, for me, it brought peace of mind to know that there would never be a time when they would not understand. Of course, they wouldn’t understand exactly what I go through, especially just from saying what I have, but it would at least give them an understanding of why things happen to me like they do. Before I came to their house for the first time, they had bought me emesis bags and a heating pad specifically for their place, and that honestly brought me to tears. Something so little can show so much thought.’ Sammi

‘One night I gave my PowerPoint on my conditions and briefly described each of them, including the symptoms, what exactly is going on in my body, the treatments, etc. That was an amazing night because it was one of our first PowerPoint nights, and it helped my partner to better understand my situation. It was also just fun for me to make and present, and my partner enjoyed learning more about the thing that affects me most in life.

Relationships are hard on their own, but when you add in chronic illness, it creates unique challenges. I have experienced failed relationships due to my illness, so I understand the fear associated with starting a relationship when you are sick. But my current relationship has shown me the importance of clear communication from the start. By introducing my partner to the concept of “spoons” and categorizing our date ideas based on my energy levels, we’ve found a system that works for us. Sharing my condition through a PowerPoint presentation not only educated my partner but was also genuinely fun. Truly, while dating with EDS may require some adjustments, it is possible to find a partner who listens, learns, and supports you through it all.

Being sick does not make you undeserving of love.’ Maz

‘All of my friends have been super supportive and make sure that I know the plans before we do anything so I can bring mobility aids or braces if I need them. We always go to the store and grab drinks and snacks so if I need to stop, we can all have a snack break and that really helps. It makes me feel like we are all having a picnic together and that I’m not holding anyone up. If it wasn’t for this, I don’t think I would be as open as I am today about my disabilities!’ Jacob

Katie says…

‘Maintaining relationships as a young person with Ehlers-Danlos Syndrome can be tough. Feeling like a burden rather than choice for friends and family can create a sense of being a chore, especially as the condition worsens, and can be emotionally taxing. The balance between needing support yourself with the desire to provide it to loved ones when they are struggling is demanding and difficult.

When you have a significant other, this adds another layer of complexity. Intimacy and affection can feel strained when your partner has to assist with basic tasks, like brushing your teeth for you. This can lead to guilt and discomfort, and a loss of sensations like romance, desire or independence.

Also, it can be embarrassing or frustrating as ableism and discrimination are ever-present. You might worry about them facing ignorance and prejudice simply because they are with you, which can lead to feeling responsible for this negativity (when it is absolutely not your fault). It’s a harsh reality that affects both of you, often in ways you can’t control or mitigate.

Explaining EDS and all its comorbidities is another significant hurdle. There’s no comprehensive guide to navigating life with a disability, and new symptoms can crop up all the time, making it tough to articulate your needs and feelings.

However, open communication and mutual support are crucial. Sharing feelings of vulnerability and ensuring your partner knows how much their support means can help. Encourage open dialogue about your needs and theirs EQUALLY, and create a mutually beneficial relationship where both feel valued and understood.’