Thanks for checking in 🙂
Today I want to talk about relationships – not just the sexual ones, but alllll the relationships that can be, (and frequently are), affected by Endo.
It’s a bit of a read today, but I thought this would be a good one for you to keep saved so you can refer back to the sections when you need to.
The area’s I’ll be covering today are:
- Work (both co-workers and your boss)
- Sexual relationships, (both new/potential and long-term-established ones)
So , let’s jump right in!
Co-workers (And Your Boss)
When to disclose that you have a chronic illness can be tricky and daunting.
You don’t want to come across like you can’t do the job; but at the same time – you need to make it clear you have a certain level of “unpredictability” with the disease.
There’s nothing in the law that says an employer can’t ask you about your medical conditions. However, privacy acts provide some loopholes to this.
If you’d like to get some job-specific info in Australia, give the OAIC (Office of the Australian Information Commissioner) a call on 1300 363 992.
If you know you can do the work, I think it’s important to be open with your employer, but wait until you have been offered the job if you can.
There’s usually a section on most “employee detail” forms to list medical conditions and this is where/when I’ll usually disclose the info/disease.
I’ll mention that while I may need time off on rare occasions to attend hospital or doctors appointments, this won’t affect my work performance.
If an employer asks more questions, only disclose what you feel comfortable/appropriate. It’s also a good time to mention when your abdominal pain and/or Endo symptoms are worst and when you’ll be most likely to need a day off.
You can also get a doctors letter backing both your ability to work and having a genuine reason for foreseen “sick days”.
If I can feel a flare coming on or if I’m in pain – I’ll make an effort to communicate to both my boss and co-workers what’s going on.
It’s always best to let them know in advance, (when possible).
This way when you’re pre-occupied trying to manage your pain AND get your work done – they won’t take your distance/distraction personal.
In a recent post, I listed the Emergency Packs I keep handy to have my immediate-relief remedies with me at all times, (inc. pain killers).
I’ve also linked the bags I use with codes/links for discounts 😉
It’s taken me a while to learn the importance of having the RIGHT support group around you.
That doesn’t mean ditching all your friends who don’t have endo for ones that do.
What it does mean, is that you need to surround yourself with the right people.
A good friend will always support you, love you, care enough to want to learn about your illness and encourage you to be your best self – whatever that may be.
They will encourage you to do things that help you, while also not judging you if you choose not to.
If you feel like you need to take some time away from your friends – give them the love and respect they deserve with a message or call.
You don’t have to feel nervous about it, you can just say something like:
“Hey beautiful, sorry if I’ve been a bit MIA lately. My Endo has been playing up and I really need to focus on my health and start taking it seriously. I’ve got some big changes to make and I kinda just need a bit of “me time” while I figure this out.
I’ll be spending a lot of time with myself and specialists, and I might try to catch up with some people who can give me advice every now and then – just wanted to let you know so you aren’t thinking I’m barring you at all!
Hope you understand and I really hope I’ll be pain-free and we’ll be out sipping on some cocktails soon!
Love you lots xxxx”
If you feel like you do need some extra support from girls who have Endo, reaching out to a support group can be a great place to start.
If you need some help finding one in your local area, check out my blog post on Support Groups here.
This part is an awkward one for me to write because I don’t exactly have a great relationship with my family – and Endo does a pretty good job of making that even more tricky to fix.
So, I will write this section for those of you who are in the same boat as me.
I feel like giving advice from any other angle wouldn’t really be the best source of ‘valid info’.
Families, (and people in general) can be really tricky and complicated.
A lot of millennial, (and their parents) grew up with a parenting style that relied heavily on shame tactics and a tough love approach.
As much as I think this approach can be beneficial at times, (and more-so in the past), it can be BRUTAL in this day and age.
In a world where we can compare ourselves with the success of 200+ others and their “best-selves” in a period of about 5 minutes of scrolling – that’s intense.
We already put enough tough-love pressure on ourselves just through social media.
What people, (especially those with a chronic illness) need is understanding, compassion and love.
This is why you need a solid support group in other areas of your life as well.
While the last thing you need during an Endo flare is someone you love reminding you of everything you AREN’T doing – remind yourself as much as possible that this is coming from a place of love, (as hard as this may be).
It’s easy to get into a negative mindset when you’re in pain.
Taking efforts to be mindful and positive will not only help your relationships, but your pain as well.
The fact is, sometimes we DO need to be pushed a little with this disease, and there’s no one better to give it to you straight than your own fam’.
If you’re still living with the fam’ bam’, do your best to push yourself to tidy your mess, clean your home and ask to do a few extra things every now and then. If you can communicate how you’re feeling while your family see’s you putting in effort without them having to ask, they’ll be more likely to be empathetic.
Sorry if I sound like your mum/dad/guardian….it took me a while to learn the value in cleaning your environment too, but it is so worth it – I promise.
If your family is really bringing you down – you can find some resources for mental health & crisis support in my Support Groups article.
Sometimes reaching out to a third party like counsellors, (who’ll listen to you vent and repeat everything back to you in a super-simple, broken-down way) can really help to bring clarity to the situation.
While I won’t focus too much on sex today, (that’s coming later) what I will focus on is maintaining a healthy relationship with Endo.
These are probably the most awkward chats you’ll ever have with anyone about the disease.
This person will potentially hear as much as you tell your doctor one day, so it’s important to avoid people who are going to play games, cause you extra stress and waste your time.
If you’ve been seeing someone special and are starting to have talks that hint at taking it more seriously, this might be a good time to slide in a little introduction to Endo.
I moved out of home and in with a boyfriend quite early in life, (way too early if I’m being honest) and I’ve had a few serious relationships in my time.
Not saying that’s something I’m proud of or necessarily think is a good thing; but it has given me some experience I can pass on to you.
With my most recent partner, Josh, (we broke up a while ago but are currently still living together) when I first told him, I thought both him and I handled it pretty well.
As my Endo progressively worsened over the last two years, I put in a lot of effort to have those “uncomfortable chats” while we were still together.
Especially with Endo, where “cuddle-only” night/weeks/months are bound to arise from time to time – it’s important to have an open line of communication about sex/intimacy.
It’s also important to stay aware there’s the chance your endo can go downhill in the future, (like it did for me). So, it’s important to prepare them that there may be times where it does get a bit unpredictable – without warning.
Freshly Dating/Potential Lover
When you are ready to have that uncomfortable chat, here’s some tips to make it less-daunting for the both of you.
If you’re dating the right guy/gal/human – chances are you’ll be feeling pretty confident in the bedroom around them.
Get some lingerie – in a style they like, (but still makes you feel sexy) and plan a date night.
A clean home, home-cooked meal, (doesn’t have to be complicated) fresh bedding and some candles is an easy, but really effective way to show them some extra tlc.
You can choose to have a chat before or after some lovin’ time, but I think the most important things to communicate at this stage are about sex and bad pain days.
You may experience pain with or around sex at times, so it might be cute to have a warning and safe word during sex (eg. yellow for slow down, red for stop completely – you can be a lot more creative and personal than that though…)
- Ask them ways you can keep them ‘satisfied’ during these times, both sexually and not sexually – make a list and keep it in a safe place
- Communicate/write them a list of things they can do both before, during and after sex to help you to relax and prevent any extra pain.
- Discuss their limits for ‘dry spells’ and how you’ll both manage it.
- You don’t need to feel pressured to have sex with them when you don’t want to, so be sure to discuss other ways you can be intimate. Some examples are having a bath together, giving a long massage or just cuddling on the couch.
- It might be a good idea to give them a ‘safe word’ to use when they are getting a bit too sexually frustrated or feeling neglected, so you know to get that list out.
Don’t forget to talk about pain days, the need for space, how they can help you and how often you think this will be happening.
- Ask them how you can help to reassure them of your love and care for them during these times – and add it to that trusty list of yours 😉
At the end of the conversation, ask if they have any questions and try to be as open as possible.
If you feel scared or nervous at all – tell them.
They’ll appreciate you being so vulnerable with them and should cut you a bit of slack.
While it might feel SUPER awkward and daunting bringing everything up, the right person will understand. They’ll feel special knowing that your focus is to let them feel appreciated and wanted, (and might even get a little excited 😉 )
It might sound cliche – but if they act weird about it, they’re really better off not being in your life – TRUST me you don’t want to give your uterus any unnecessary stress.
A little mention I wanted to give was an Instagram page called @partnersofendo. They’re dedicated to being a support page for – you guessed it – partners of endo
It might also be a good idea to take them to a doctors appointment with you, where they can ask any medical questions they might have.
For your Main Squeeze/Long-Time Lover
As the relationship progresses, there may be times your Endo gets bad.
During these times, it’s super important to have an open line of communication throughout the whole flare.
As easy as it is to bury yourself in a land of “why me?” when you’re in pain, it doesn’t do anyone any favours – including yourself.
Push yourself to be respectful.
You don’t have to be fake and bubbly and happy – but you do have to be respectful.
The right person will understand how your hormones can be overwhelming and tricky to manage at times – and that being in a world of pain on top of it doesn’t help.
When you’re a bit snappy and don’t have a lot of patience – tell them.
I would pitch it to my ex, Josh in a positive way.
Like, “I’m kinda in a really crappy mood today and I think I just need some space. How would you feel about having an Xbox day or catching up with a mate?”
Nine times out of ten, he’d be stoked and ready to provide care if/when I needed it.
If your Endo goes really downhill, you’re going to need to have some pretty uncomfortable conversations about money, housework, your health and sex.
I was lucky with Josh that he never cheated, but I have had many of these experiences in the past.
Which is why I personally decided to offer the opportunity before another girl offered it to him first.
It was not an easy decision and I spent a good 3 months thinking about it before I sat down and spoke with him about it.
We had gone from being pretty active in the bedroom to literally being able to hear the crickets 10 blocks down the street.
He was (and still is) a bartender in Broadbeach, which is a bit of a hot spot on the Gold Coast for tourists and locals in our 20-35 years age group.
While I never thought he was out trying to pick girls up, I recognised that it must have been pretty difficult to see beautiful women all day long; Only to come home to a messy house, a sick girl in bed who can’t move and not a chance of getting busy.
We had spoken in the past, (casually) about brothels and he had mentioned he would never feel comfortable at one, (nor would he need to go to one), so I knew that wasn’t an option.
After months of thinking about it, imagining it happening over and over to the point it didn’t make me feel sick anymore, I decided I would be ok with a “hall pass” – if there were still certain boundaries.
I was well aware that if he did chose to take the offer, it would still be an unpleasant experience for me and I would have to plan to spend the weekend with a good friend to not go crazy.
I also had support contacts lined up and ready to reach out to, should I be triggered by my past experiences of cheating.
Basically what I’m trying to say is that there were SO many factors I considered and if this is something you’re thinking of – it’s VERY important you do the same.
*For the record – I’m not saying this is something you SHOULD do*
I’m simply sharing my personal experience.
I really don’t think I could have done this with any other guy I’ve dated and there needs to be a SOLID foundation of trust and communication to get through it.
Josh didn’t end up taking the offer, but I did make more of an effort to start conversations for him, and be proactive in asking about how he was feeling re. sexual frustration.
I would also remind him of the offer, my love/attraction for him and comfortability with him requesting sexual favours from me.
Remember, it’s going to be so daunting for them to bring it up – especially knowing you’re in pain.
I mean, imagine going up to someone you love and care about, knowing they’re in horrendous pain and being like, “yeah sooooo……..I’m horny”.
Not exactly a confidence booster, let alone a turn on.
This is why it’s important to give them the respect they deserve and check up on them and how they’re feeling too – even if it’s a wee bit uncomfortable.
When it comes to pushing yourself to have sex COMFORTABLY during a flare, I have a few tips – but I think I’ll save that for another day.
Having serious chats about Endo can make you feel a bit down – and that’s ok.
Not everyone is going to understand the way you’d hope them to – and that’s ok too.
I try to remind myself it’s a GREAT thing when people don’t understand Endo.
The truth is, I don’t know many people who could handle this pain on a regular basis, nor would I wish it upon anyone.
If you do need some extra help explaining what it’s all about, feel free to use my What Is Endo article, and/or any of the references in it.
Finally, remind yourself you aren’t defined by your disease; your presence on this earth is unique and valuable; and the opinions of others don’t matter.
Battling/managing this disease makes you one strong, resilient, badass QUEEN and you have to make an effort to remind yourself of that every day.
Heck – get it tattooed on your forehead if you have to.
Finally, please don’t feel like you have to do everything I mentioned.
This article has been based on my own personal experiences and every situation is different.
Put your own flare on my approaches – or don’t use them at all – it’s completely up to you!
The important thing to remember is that you put effort in for yourself and those who put in effort for you.
In times you can’t muster the strength to be an absolute delight, at least be respectful to people around you and communicate how you’re feeling to those close to you.
Just as important – is to respect yourself and learn to say no from time to time.
Remember your health is paramount – without that, you’ve literally got nothing to give.
The best way you can care for and show respect to others, is by first showing it to yourself.
I hope this post has brought some clarity and good advice for those tricky chats.
If you have taken something away from this post, I’d love to know! Please feel free to share in the comments below or feel free to send me a private message through social media, (@bbsendo) or email, (firstname.lastname@example.org).
Have I missed anything? Let me know if you have any extra tips for maintaining healthy relationships with Endo in the comments below xx