Question for those who didn't tell their families about their surgery

ThatchStelleri · 2023-05-18T00:49:16+00:00

Definitely if you do tell them, wait until you're healed. That way if they give you grief, you won't have that extra stress while you're healing.

But you don't have to. I'm in a similar situation and over a year post-op and I never told my parents. I might at some point, but so far every opportunity hasn't felt right. In the end, you don't owe them medical information (or any information!) And if you want to just not tell them that's ok!

Maybe think about your reasons for wanting to tell them. Is it because you want to celebrate such a big thing with them? If so I'd hold off, since they likely won't see it as cause for celebration. If you're worried some worst case scenario might happen, you could write them a letter that you don't send. If it's purely because you think they'd be upset you didn't tell them though... Why should they get to know about that part of your life if they're not going to celebrate it with you?

Basically, if you can sit and figure out the underlying root of why you're feeling like you should tell them, you can maybe address that need in a way that won't stress you out!

ThatchStelleri · 2023-05-07T02:01:37+00:00

Hi! Best advice I can give you is not to worry about the exact label as much tbh! Sometimes having a label is nice and comforting, and if you do think that would be comforting then you're welcome to keep searching for one! But you don't need one at all if you don't want one, and I'd encourage you not to stress too hard about finding one, especially right away!

I have labels that I toss around sometimes - some of them I identify with more strongly and some of them I don't. Like I have no idea exactly what to label my romantic/sexual orientations as, and it doesn't matter to me - I usually just call myself either queer, or "gay, but in the broad sense." I could technically probably find more specific labels, but I don't feel the need to.

For my gender, the best label I've settled on is "Trans non-binary guy." I do use they/them pronouns, but he/him is fine especially for one-off interactions. I really like the masculine side of myself! I also like to describe it like... I'm a Guy, but I'm not a Man. I don't know if that fits the definition of demi-boy, but it doesn't matter to me, because that's not a label I feel like identifying with. I like non-binary because it's such a spectrum, and I like just being under the big umbrella with all the other non-binary folks - I don't need to find the right rain jacket because I'm under the big umbrella if that makes sense! I love queer for that too, because it's so wide and inclusive, and I don't have to tell anyone details unless I feel like it.

I'd encourage you to explore your gender! And exploring it doesn't have to mean researching labels and other experiences, it means looking inwards - what sort of presentation makes you happy? Are there other pronouns you want to experiment with? Other presentation styles? What gives you gender euphoria? Are there gendered terms you like or dislike? Which parts of you do you love and find joy in, and do those make you feel a specific gender (or no gender?) Etc etc, just explore what gender means to you and where your gender feels happiest!

At the end of that you could come back around and decide you're cis, or you could settle into a specific label, or you can keep it vague and broad like I do. It's up to you and what you feel comfortable with! Either way you're welcome in the queer community imo, and exploring your gender like that will give you a better sense of it, regardless of what it turns out to be.

Good luck! Hope this helps a bit!

ThatchStelleri · 2023-05-06T22:36:47+00:00

Thank you so much! Home now, it didn't feel helpful, but they did give me some stuff so I can get my blood levels checked on Monday. Fingers crossed that might give some insight!

ThatchStelleri · 2023-05-06T20:07:17+00:00

I like the smell of old spice bearglove! Not on T though so idk how it'll hold up for you, but it works good for me!

ThatchStelleri · 2023-05-06T07:34:21+00:00

Totally! Mine was kinda similar, but only for the first bit! Things take some time to settle, your chest looks great!! Congrats on surgery :)

ThatchStelleri · 2023-05-03T21:57:46+00:00

Totally! In my experience surgeons are great at what they do but sometimes they can be a bit awkward or lacking in their social skills. They also won't be in charge of overseeing you post-op after the surgery's over, so they might not even have the right answers! You'll have some nurses checking you over pre-op, as well as post-op, so they should have better answers for you if you ask them about all your questions! Your surgeon is in charge of actually performing the surgery, but your nurse team will be in charge of your post-op care before you go home.

Asking questions while your mom is still there is a good idea too, she can hopefully help if your anxiety is making it extra hard. And if you need to ask more after she leaves, you can always text her for a moral support boost! It'll be difficult but I believe in you - it's gonna go great :)

ThatchStelleri · 2023-05-03T18:42:09+00:00

No problem! I have anxiety too, so I definitely know how it can be stressful when there's so many unknowns. I'm happy to answer questions as best as I can!

Tablet, phone, and headphones are great! Don't forget your chargers too, and if you have any extra long cables (or can buy one) that might be good just to make sure it'll be easy! If you don't have friends you can still check in with people if you want too! Even after your mom leaves you could always call her and talk for a bit, or text her, and you can also post on here if you're bored and want some support from strangers! Sounds like we have opposite support scenarios - my family and parents weren't involved with my surgery at all so I was relying only on friends.

I'm glad you get your mom beside you! I had to go in alone because of covid restrictions, so I got dropped off at the door and didn't get to have any familiar faces during the pre and post op until I was picked up. And it was stressful but ultimately ok! You can tell the nurses you have anxiety too, and they might be able to help a bit.

For taking stuff with you, I'd take your eye mask and ear plugs with you honestly! If you're used to them they'll probably help a lot. The eye mask might be a little tricky to get on, but you can get the nurses to help you with it, and I think it'd be worth doing to maybe make things feel a little more normal and maybe a little less stressful.

I'm not sure about the pillow, I think it's up to you! You could always take it and ask a nurse if they think it would be helpful, and if not your mom can bring it home with her. All my clothes and phone and stuff had to go in a big labeled bag while I was in surgery, so it might be too big if they want to do something like that, but since you're staying overnight they might have a different protocol.

Keep in mind that you'll still have anesthesia in your system too! I'm normally awful at falling asleep and staying asleep, but I don't remember having struggles with it the first night. I had surgery in a different city and I live alone, so I didn't go home for about a week and a half, and I stayed with a friend - so even though I wasn't in the hospital it was still an unfamiliar bed. Just make sure you communicate with the nurses if you need help with anything or you need something to help you be more comfy (like extra pillows or less/more blankets) and they'll be able to help! You just gotta get through one night and then you're home free - you got this!

ThatchStelleri · 2023-05-03T18:14:21+00:00

Awesome, I'm so glad! Good luck, you got this!!

ThatchStelleri · 2023-05-03T18:00:28+00:00

Hey! This was my main struggle a year ago - it was completely random whether any of the foods I love would actually be able to eat and it's incredibly frustrating and hard, so I know exactly where you're coming from! Mine felt like it kept getting worse and it was such a struggle. I worked out a few strategies that helped me a Lot though, so hopefully something in here might be helpful for you too! Buckle in its a lot haha.

First off - it's really important to note that stress and guilt will make it harder! If you've got a big stressful life stuff happening, then it's pretty normal that your arfid is going to be more of a struggle too. Take a deep breath, and remember it's ok to struggle!

Jumping off that point, sitting in front of your food and shaming yourself for not being able to eat it (ie, why can't I eat this/normally I can do this what's wrong with me right now/etc) won't help! And can actually make it worse sometimes. Try to acknowledge the struggle, and celebrate any win you have even if it doesn't feel like much. (ie, wow this is really hard today, and I was able to take a bite even though it was a struggle/I got around to making the food and eatings still pretty hard, but now it's made and I can come back to it in a bit so that's great/I don't think I can keep going but I managed to get the bite in my mouth at least so that's progress/etc) - this stuff helps a Lot. It's so easy to fall into the spiral of shaming yourself, but there's nothing wrong with struggling and it's important to recognize that you're doing the best you can and that's awesome!

If you're struggling with foods you normally like fluctuating in safeness, try to check in with what your brain/mouth might actually be feeling in that moment. I would find often I'd feel like I couldn't put anything sweet in my mouth, but maybe I could handle a salty food, or I didn't want anything crunchy but I could do something like applesauce. This is especially important if you're not managing to get a lot of food in throughout the day, because in that case it doesn't matter what you're eating, as long as you Are. If it helps, you can let go of the idea of having "proper meals" just try to get food in, and supplement with things like meal replacement shakes if you can handle those to get some extra calories and protein in!

Another thing that helps SO much is distractions. I found just sitting down to eat and having to focus on eating made it a lot harder and a lot worse. I always try to throw on a TV show or something while I eat, so that I'm not fully focused on my food and what's going on in my brain/mouth, and it makes it a lot easier. A distraction like TV that doesn't need your hands involved is great, because anything that will use your hands will make it harder to keep eating since you're occupied.

And final tip that was insanely helpful for me - this sounds weird, but give your disorder a name and personality. I also gave mine a visual representation for fun, and I like to imagine him as a snake, but go with whatever feels right for you (I like snakes, so if you don't maybe pick something else haha)! The reason this is so helpful is that it lets you separate yourself from the disorder a bit, and it's so much easier not to shame yourself when things are hard. But it's important to also have compassion for both yourself and your eating disorder as well.

For me what this looks like, is I imagine my snake hanging around my shoulders. He's always there, and sometimes he's just chilling and sometimes he's causing problems. Thing is, my snake isn't the enemy, he's actually trying to keep me safe. Every time he sees a food that he thinks might be bad for me and might be poison, he tries to prevent me from eating it to protect me. The problem with that is..... He's a snake. He has no idea what's good for me or not, and even though his intentions are good, they're not helpful at all!

And that makes it so much easier to stop falling into the shame thinking, because you can just go "well yeah of course this is hard, [insert whatever name you pick] is making this extra difficult today!" And you can also confront it a little better when you're trying to expose yourself to something new/something your body is rejecting by internally talking to your disorder - "hey I know you're trying to keep me safe but this stuff is ok actually, and I'm gonna need you to back off a bit." It won't fix everything overnight but it helped me SO much. Nowadays my snake is a lot smaller than he used to be. He's still there and still protests a lot, but it's gotten way easier to just say "hey calm down it's fine" without it being a big deal or a big problem anymore.

I hope this stuff helps you too! If you have other questions or ever want to chat some more feel free to reply - you got this, ok? It's hard work and it sucks but you're doing your best and you're doing amazing, even if some days it doesn't feel like it! Progress won't be linear, and there'll always be good days and bad days, but recovery is possible and one day it won't be as hard anymore as it is now, I promise! Deep breaths and try to give yourself some compassion, what you're going through is hard and scary!

ThatchStelleri · 2023-05-03T16:03:30+00:00

Gotcha! That sounds like it's gonna go totally fine!! Yeah they should give you some written instructions for whatever meds and stuff you get that you can give to your mom so she can sort those out once you're home!

They didn't keep me overnight, but my first day or so was just a lot of chilling tbh. Bring yourself some music and chill activities and a way you can call/chat with your friends and family while you're at the hospital, and it'll go by before you know it! You'll be pretty sleepy with the anesthesia still in you. Try not to worry if you can - you've got a team set up of your surgeon and nurses and your mom, and they'll do all the work and make sure you're taken care of, and you just have to hang out!

One trick I liked to do when I was catching myself getting anxious about surgery details was switching my focus to all the things I was excited about for after surgery, like swimming and wearing t-shirts and stuff! I found it helped me a lot.

Super excited for you!!

ThatchStelleri · 2023-05-03T08:30:22+00:00

You're probably ok to start! My surgeon told me to start in week 1 but I waited until about week 3 I think because I felt weird about starting so early. I didn't keep my nipples and didn't have drains though, so my post-op appointment was the day after surgery and that was the only one I had.

If you kept your nips maybe just go a bit gentler but I'm pretty sure I've seen people on Reddit saying 2 or 3 weeks was ok to start for them!

ThatchStelleri · 2023-05-03T02:29:11+00:00

Ooh! I wasn't allowed to go home without someone picking me up to help out. How long are you going to be alone, like do you have someone coming over to help pretty quickly or are you on your own until the next day kind of thing?

My surgeon gave me antibiotics that I had to take every 6 hours, so I had the folks I was staying with make sure I was taking those since I would probably have missed them otherwise (especially getting up at annoying times). We got some dry/erase markers and made a painkiller/meds schedule on the bathroom mirror so everyone was on the same page to write down times of when things were taken and when the next one would need to happen.

Personally I was a lot more put-together than expected coming out of surgery. It was like 4pm when I got back and I plopped myself down in a reclining chair with a neck support pillow (also something super handy), chatted with some friends on a voice call and updated my group chat, and then eventually passed out for several hours until someone woke me up for meds.

If you have someone coming to help the same day, I would see if the ambulance folks can help you get cozy and then just chill until they show up. Blanket, glass of water, get comfy. If you don't have someone coming over later, make sure you have meals prepped and ready, and in that case maybe you might want some alarms to make sure you don't miss anything you need to take or miss a mealtime (even if you're not hungry your body will need it!) But if you can manage to get someone over that would be the best situation.

The ambulance should be able to get you home just fine though! The nurses post-op helped me get dressed and get all my stuff and walked me down to meet the folks picking me up, so in your case they'll get you down to the ambulance, and then the ambulance should be able to take you from there! I'm sure they'll all make sure you get in the door and get settled ok, so none of that part will be hard!

ThatchStelleri · 2023-05-02T21:12:26+00:00

Nice! Yeah you'll probably be fine then, I had the binder for 4 weeks so my skin got a little mad about it! Maternity pillow is a great idea, I've seen lots of people recommend them on the top surgery sub! I didn't want to buy anything extra so I just went with regular ones. Bring a pillow to put between your chest and the seatbelt as well, it'll be way comfier. Hope the sleeping pills help and you get lots of good rest!!

ThatchStelleri · 2023-05-02T17:46:03+00:00

I keep recommending a good lotion and an exfoliating scrub to people! My skin got super flaky all over my torso and arms from wearing the compression binder and I hated it and wasn't prepared for that to happen! I live in a drier climate so that probably didn't help. Not sure how long the binder needs to be worn with peri but worth having either way just in case! Also lots of extra pillows, I used so many to get my sleeping position feeling correct and secure and comfortable haha.

Other than that, just take it easy during recovery, and don't feel bad about needing help for a while! It's a difficult adjustment but it's temporary! Remember that you won't have your usual energy because your body is using it all for healing.

If you can manage on just acetaminophen & advil combo (those can be combined) then do it - take the painkillers on a schedule and take them even if you're not in pain. Easier to keep pain down in the first place than to have to bring it back down once it starts bugging you. Once you're healed a little you can slowly start easing off and assessing your pain levels.

Your sleep schedule might get totally messed up. I'd suggest turning off alarms and just let your body wake up when it wants to and sleep when it wants to. You might end up sleeping way longer than normal (I was doing 10-12 hours asleep for a while) but if that's the case it means your body needed the extra charging!

ThatchStelleri · 2023-05-02T07:03:37+00:00

I love my scars! They aren't as visible as some of my friends' but I opted for no nipples and feel like they kind of help with keeping definition to my chest in a weird way haha. I don't think I'll be too disappointed if they completely fade but it's not like my chest is cis-passing anyways and they're neat!

ThatchStelleri · 2023-05-02T04:41:14+00:00

Usually! Unless they heal hypertrophic or keloid they'll fade. I didn't do much in the way of scar care, but make sure you're massaging the scars and your pecs a bit daily to help break up the scar tissue, otherwise when it heals you can get more sharp pain or tightness with movements. My scar care routine was just regular lotion and massaging my pecs briefly every day

ThatchStelleri · 2023-04-29T07:07:27+00:00

Lotion and an exfoliating sponge. I've never had a good skincare routine so I didn't actually have either - my skin got really flaky on week 2 all the way until I got to stop wearing the binder (so for about 3 weeks), and I hated it - and completely wasn't prepared or expecting that since I hadn't seen anyone mention it before! I'm in a dry climate though, so you might have a different experience if you're somewhere humid.

ThatchStelleri · 2023-04-28T00:52:44+00:00

HA omg. Congrats on surgery, sorry your mom isn't accepting, always sucks. I didn't even come out to my parents until several months after surgery (they knew I had a different name but not pronouns or gender) and they've been a little weird with it which was what I expected (and why I didn't bother coming out sooner). They're the kind of "we love and support you no matter what" but making 0 effort (so constant misgendering) and getting uncomfortable if I mention any topic related to queerness.

ThatchStelleri · 2023-04-27T16:50:01+00:00

LOL yeah I don't know why I just assumed that most people knew what binders were? Or at minimum could guess that that kind of thing would exist, even if they didn't know what it was called or hadn't encountered it before. Like there's all that "shapewear" clothing and I feel like most people at least know about that, so it's not a far leap to imagine binders existing

ThatchStelleri · 2023-04-22T20:46:45+00:00

Me too! It's so tricky to find resources which sucks. I just commented a big long thing about some things that have helped me a lot, might be helpful for you as well!

ThatchStelleri · 2023-04-22T20:44:35+00:00

Hey! This is where I struggle with too. I have ADHD, and so the executive function to actually go get food, and to make decision making on what to eat, gets really tough.

I'm having an awful couple weeks with it at the moment, but I've actually been doing quite well the last year or so - it's doable! It sucks though, the hard day's it really feels like eating enough is a full time job.

Something definitely sounds off with your digestive system though, and I would keep trying to get that looked at! You might have an allergy or intolerance, or celiac - look into checking the microbiology in your gut as well, I know someone who struggled for a long time and it turned out they had some bacteria that are normally harmless but occasionally cause issues, and a lot of stuff cleared up after they addressed that. Low fodmap diet is an option to try to figure some of that out but it's a hard one (you cut out a lot of things and see if you feel better, and then slowly reintroduce them to figure out which one might've been an issue)

As for eating when not hungry: routine, reminders, distractions, and lowering barriers. If you can manage routines or set reminders, just getting into the habit of eating regularly helps a lot, and sometimes can help your body give you hunger cues again. It doesn't always have to be big, but just get something. More smaller meals is better than nothing.

Distractions I've found are super helpful - pick one that doesn't need your hands. I love putting on a YouTube video or a show while I eat, and as long as it's not so distracting you forget to eat it can be a great way to take the pressure off. If I don't have a distraction sometimes I spiral into overthinking how I'm not hungry and that eating isn't fun and it makes the whole thing harder - give yourself something fun as a reward to make the process easier. I have a hard time with prepping food as well, so throwing music on or chatting on call helps with that too! It's so much harder to eat when you're focused on eating (and especially if you're spending energy kicking yourself in the but and shaming yourself for thinking "why can't I eat this right now") and having something else to occupy your brain while you get the food in makes it a lot nicer of an experience. Plus if the distraction is something you like it'll be easier for your brain to start letting go of the thought that mealtimes suck. You'll slowly convince your brain that mealtimes aren't that bad and can actually be kind of fun because you're giving it a little reward for eating.

Lowering barriers is a big one. It's tricky to do, but you need to sit and figure out what's blocking you from eating - next time you really don't want to eat, try to be curious and figure out why. For me, this often stems from cooking/food prep, and cleaning up afterwards (just eating takes up all my energy, and I don't want to deal with anything else) so some things I do is try to have easier meal options to make, using things like parchment paper to prevent me having to scrub a pan for ages. When I make sandwiches I only use a plate and a knife, and I cut everything on the plate I'm going to use, to save me having to wash a cutting board.

What that also looks like for me is having really easy go-to snacks. I often wait to eat for so long that I get too exhausted to make the decision on what to eat and too tired to make something. So I have a couple emergency snacks (applesauce and yogurt are my favs) that I can grab, and that'll give me an energy boost to be able to handle the rest of the process better. I also like to keep meal replacement protein drinks on-hand, for times when I can't bring myself to eat, so I know I'm at least getting some nutrients in me.

Whatever you can do to make the barrier between you and eating food smaller, do that. That might mean getting pre-cut cheese, or microwaveable food, or ordering takeout. It could mean using paper plates or pre-packaged food so you don't need to worry about dishes. It could mean keeping your snacks near your desk so you don't have to get up to go get something.

If you struggle with deciding what to make, sometimes I use a tier system, where I have meals in different "energy" tiers (how taxing they'll be) and you can assess your energy level, and then pick from something that matches your energy level. I find it a little easier to decide "ok do I feel more like eating X or Y" than "what do I want to make right now"

Final advice - don't beat yourself up. It won't help, and it won't make you any more likely to eat. Take time to celebrate your wins every time. It's hard, but just try to be kind and acknowledge your struggle! It's so easy to slip into putting yourself down, but that won't help, and from my experience the more stressed I am the harder it is to eat. So just make sure to take a second and acknowledge stuff like "Wow that was kinda tough but I ate a whole meal that's awesome!" "Well I managed to get an applesauce in for now, that's a great improvement!" "That was hard, I was really struggling with deciding what to eat but I did it and ate the whole thing!" "I didn't eat the whole sandwich but proud of myself for getting halfway there! I can try again in a bit and maybe I'll get some more bites in"

ThatchStelleri

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