Dating is tough. As a 19 year old, I can say that. When I was younger I thought I’d meet my one true love easily, I thought I’d be walking through highschool, earpods in (listening to some cheesy alternative music), and suddenly my dream man would bump into me, gracefully catch me in his arms, and we would look into each others eyes and instantly fall in love. But 9 year old me was incorrect. For starters highschool was nothing like high school musical said it was gonna be. Right before highschool started I was diagnosed with Cystic Fibrosis and on top of that I was a confused 12 year old questioning absolutely everything about my identity, so both of those issues got in the way of my teenage dream.
A quick run down on Cystic Fibrosis- Cystic Fibrosis (CF) primarily affects the lungs and digestive system because of a malfunction in the exocrine system that’s responsible for producing saliva, sweat, tears and mucus. You can read more about CF at https://www.cysticfibrosis.org.au
Usually those with CF are diagnosed before 3 years old, but in my case I wasn’t diagnosed till 11 due to limited testing. Along with CF I was also diagnosed with pancreatitis, chronic fatigue and chronic pain. Which basically means I’m sick 99% of the time.If it’s not a chest infection it’s an inflamed pancreas, if it’s not an inflamed pancreas it’s constant muscle cramps, if it’s not muscle cramps it’s being overly tired. It’s a never ending story.
Having CF greatly affected my social life as I was barely in school due to being unwell. I changed schools a few times due to being treated poorly by teachers and students because of CF, which affected friendships which then affected my social life. As an adult I have a small group of friends who I try to go out with occasionally, but unfortunately due to being unwell- it’s a rare occasion. I can’t spontaneously decide at 4pm that nightclubbing is a great idea for that night, I haven’t had my 2-5 hour nap yet! Or I’m in the middle of it! If I’m leaving the house at 7pm then I need at least 24 hours notice. I need to prepare by going to bed by 10pm the night before, so then I can be awake by 8-9am, start my nap by 1pm, and then be up by 5pm to get ready. I also need to plan out my medication for that night, so you need to give me an exact address of where we’re going so I need to know if I’m leaving the club at 11pm to go find food to have with my meds, or if I’m sneaking in a block of cheese in my purse. I also can’t be drunk before 11pm or else I may forget to take my meds. Also don’t expect me to be on the dance floor for more than 5 minutes as I'm going to need a 5 minute break to catch my breath and rehydrate (yes I am that person who orders water at a nightclub, no I’m not embarrassed). I’m also going to be ready to leave by midnight, or else I will find a chair and fall asleep in it and you’ll have to carry me out the club while explaining to the bouncer “no sir she isn’t intoxicated, she just has a life threatening illness that makes her fall asleep sober in clubs”.
So all this really does affect me meeting new people and being able to date. Plus identifying as bisexual on top of all of that adds to the difficulty. There isn’t a massive gay scene for females in Melbourne, Australia so it makes it difficult meeting girls, and sometimes you’ll come across men who aren’t all for their partner being bisexual, so some tend to hide that side of themselves when chatting to someone new. I’m not ashamed of my sexuality or my illness, so if I’m talking to someone new in a bar and we’re getting to know each other, I will bring up both of these. I don’t go into a lot of detail as I understand not everyone gets it, but from my past relationship I realised exactly how I like to go about educating someone new about my life.
I met my ex on tinder right before covid hit in 2020, we spoke on and off for about 9 months before we went out on our first date. From our first date to the day we broke up it was roughly two months. It was my first relationship. It wasn’t long, and it definitely wasn’t an ideal first, but it did teach me what I need in a relationship to feel loved and supported. Although I’m not overly experienced, I’d love to share a few things I learnt that I feel are important when dating when you identify as disbaled and LGBTQ+
(My first relationship wasn’t exactly a cinderella story, so warning, there’s some sad discussions)
HANDLING FIRST DATES WITH A DISABILITY
As someone who has only ever been on one date, I’m still learning how to go about this. As me and my ex had spoken for a few months prior to meeting up, I had already informed them of my illness, so it wasn’t something that had to be discussed on our first date.
However the way I did go about it was I simply brought it up like in conversation like it was nothing. I didn’t want to make a huge deal out of it or talk about it like it was some huge secret. And I’ve been the same with others I’ve spoken to after breaking up with my ex. I don’t tell them like it’s a warning, I’ll bring it up casually. For example, if we’re discussing school I'll mention I didn’t attend a lot due to being unwell, and if they choose to ask questions, I answer. I’ve learnt to never get offended by someone asking questions. Everyone's a little bit curious and that’s ok, as long as the person I’m talking to isn’t rude about it, I have no problem answering their questions and educating them about my illness.
WHEN DO I TELL MY PARTNER ABOUT MY DISABILITY/SEXUALITY? HOW DO I NAVIGATE THEIR RESPONSE?
My illness is an important part of my life, and it should be important to my partner as well. Like I mentioned previously, I’ll bring up my illness easily and I’ll do it with anyone, I’m an open book about it. For me it’s important that my date/partner is aware of my illness and is slightly educated before moving forward in the relationship. Unfortunately there are people out there who won’t be comfortable with your disabilities, and as wrong as it is, you don’t want someone like that. You need someone who is going to support you by taking you to your hospital appointments, help out with your meds, take care of you when you need it and so on. So personally for me, I think it’s great to embrace your disability and be open about it. Same goes for sexuality. Be loud and proud about it. I told my ex I was bisexual while drunk on the phone at 2am, not the most ideal situation, but whatever works for you. No matter what sort of relationship you're in, your sexual identity will always matter. After drunk me disclosed my sexuality to my ex, I was extremely open about how important LGBTQ+ is to me. I told them about my love for drag queens and how I love to do drag as a hobby, I showed them my favourite show RuPaul’s Drag Race and would constantly talk about my favourite queens (although did this come at the price of watching star wars with them). I never once felt like they were judging me for my sexulity. When it came down to my illness, I didn’t feel that same love and support. I tried to explain to my partner many times how my illness affects me daily, and although they did their research and asked questions, they always felt uncomfortable. If I was tired and just wanted to chill and nap, it was always an issue. If I was sick they would suggest they leave me alone and we hang out another day, and never showed interest in attending appointments with me. Simple things like that, that really got to me. In a relationship I need a partner who will be there for me when I’m sick, attend appointments with me, take care of me but unfortunately I didn’t have that. And it’s ok! It was an experience to learn from, and the most important thing I learnt was what I needed, and I’m going to take what I learnt and use it in my next relationship so I have a more positive and comfortable experience. Not everything is perfect right away, things take time, but it’s always better to wait than settle for something that doesn’t make you happy.
SHOULD MY PARTNER TELL THEIR FAMILY ABOUT MY DISABILITY/SEXUALITY? Now this is something that is EXTREMELY important to me as someone who is quite an open book. I like to be myself, I hate being fake. My way of coping with everything I’ve gone through with my illness is making jokes, cause if I’m not laughing- I’m crying. However, considering my ex took nearly 2 weeks to tell their parents we were together, I was not surprised to find out these situations weren’t discussed. They knew about me having cystic fibrosis, but for some reason anytime it was mentioned in their household, it was like wizards reacting to Harry Potter saying ‘He who shall not be named’. So after realising that, you can understand why I stayed quiet on the whole bisexual thing.
I can understand that some people find these things confronting (meaning illness not sexuality), but to a point. The fact that I was made to feel like I couldn’t discuss it, whether that be a serious conversation or me just cracking jokes, is not ok. My illness is something I deal with everyday, I can’t just put it on hold for someone else.
I think these topics should be discussed, and I think it’s important to have these discussions early on in the relationship. Because if you end up in a situation like I did, you wanna get out of that as soon as you can. It’s also easier to have a planned conversation about an illness, because if you're like me and have medical equipment to take anytime you stay over someone’s house, it’s kinda hard to hide it from their parents (if they still live with their parents that is). A Lot of us who do identify as disabled experience a lot of different things to abled people that greatly impact our lives, so it does happen to come up in conversation a lot. You are able to feel comfortable when getting to know your partner's family, and not worry about hiding so much of yourself.
HAVING SEX FOR THE FIRST TIME
Sex. It’s a wonderful thing. The first time however, not so wonderful. It’s definitely not like in the movies. I was terrified my first time, and in all honesty it took me and my ex a few times before I felt comfortable enough to fully go for it. When I did feel comfortable enough, It lasted about five minutes before I became too tired and also had to pee. Romantic.
I won’t lie and say it didn’t hurt, it was more uncomfortable than it was pleasurable. Honestly I wasn’t impressed. But the second time was a lot more enjoyable and pleasurable since I knew how it worked and I wasn’t so nervous.
The one thing I found most important before having sex was making sure my ex did their research and listened to my needs (it’s also very important to listen to your partners needs,
abled or disabled). Sex is a lot of work, honestly when my physio therapist asked me what I was doing to keep fit, I felt like telling her sex was my form of exercise.
The biggest thing for me to feel comfortable was communication. I made it very clear that there may be times I get out of breath, or might experience muscle cramps, and I’ll most likely need to stop or have a break.
ABOUT THE AUTHOR
My name is Ellie, I’m 19 years old from Melbourne, Australia and I have Cystic Fibrosis and identify as Bisexual. I’m currently working towards by goal of becoming a drag queen (@bbykikialert on instagram)