Blog

Written by Emily King

15/11/22

Blog

Naomi’s story (2/2)

8 mins

Naomi Grundy had to push for medical attention whenever she realised that her extreme period pain was not just period pain, she had to push for surgery to confirm that she had endometriosis after she had already been chemically induced into a menopause, and she had to push for her ovaries to be removed, having to convince consultants at age 33 that she knew that she did not want children. Thankfully, Naomi’s current consultant has never argued with her about her decision not to have children, but to be put on the surgery waiting list he told her that she needed to significantly lower her BMI.

“I won’t say that chronic illness was the only influence on my weight, but it didn’t help. It was my medication that my consultant said would make me gain weight, even on a calorie-controlled diet. I didn’t even want to move, be active. There’s fatigue, you’re exhausted. At the end of last year, I made the decision to have a gastric sleeve done. Partly for the endo surgery, but it’s been one of the best decisions I’ve made in a long time. I have lost 10 and a half stone in the last year. It’s got me on the list for my endo surgery and I’ve got my confidence back. It’s given me my life back. I agree that your worthiness isn’t determined by your weight, but I wasn’t happy.”

The impact that endometriosis, a chronic and invisible condition, has on many people’s mental health is crucial to highlight. Physical health and mental health intertwine in many ways, and Naomi advocates for this by being open about her journey as someone who is still medicated for depression and anxiety. Back in 2019 she had just started a new job but was hit by a serious flare up which led to her being admitted to hospital. While this was entirely beyond her control, her new employers decided it wasn’t working and let her go. Her social life began to decline as friends interpreted her frequent cancelling as disinterest. Such an experience can feel isolating, regardless of any number of supportive family and friends, and so Naomi turned to Instagram to find community.

“I started Instagram after surgery in 2018 when I was feeling a bit lost and didn’t really know where to turn. I have amazing friends and family who are so supportive and would do anything for me, but it’s not that easy to speak to someone who just doesn’t understand it. I have a great community now after starting to focus my page on my endo. The support I’ve received from people on it… I don’t honestly know how I would’ve managed without those people to talk to about my illness. Finding people that understand and support you, having someone to talk to as much as anything. Someone to share experiences with and ask what they think.”

For those living with endometriosis, the penetrative-focused model of sex makes it seem like pleasure is completely unattainable. Painful penetration is their reality, yet this is not unique to the endo community. Between constructs of virginity and the glamorisation of the ‘tight’, i.e. unaroused vagina, vulva centered pleasure has become secondary, existing only to accommodate a penis. Young people with vaginas are often told to expect painful sex instead of pleasure, and therefore do not seek help if they do experience pain, denying themselves not only of positive sexual experiences but also of appropriate health care. Painful sex is not normal, nor is it the only option, and Naomi encourages people to expect more, to find what is pleasurable to them:

“I have had to adapt my sex life for the simple fact that I have painful sex, there are times that it just doesn’t work, it’s a big no, but I’ve never had a problem voicing that because we talk. We talk about what I need, and we go from there. Just be honest. The way I see it, if they’re not willing to be understanding and they’re not willing to help and work with you and adapt, is that a relationship you want to be in? Because for me, it’s not. It’s being open and honest, saying wait a minute that hurts, having open conversations.”

Those living with chronic illness sometimes experience their body as medicalised, rather than a vessel that is wired for pleasure. GLORIAH’s intimate oil, The Stevie, was created with menopausal driven dryness in mind and encourages people to seek out small moments of indulgence. Naomi explained that since entering menopause she typically experiences painful redness after shaving and was happy to report that Stevie brought her relief: “only after one use my skin seemed so much more hydrated and my skin wasn’t irritated, and the redness disappeared immediately”. Physical changes, particularly ones experienced with pain, can cause a disconnection between body and mind. Facilitating ritualistic moments to nurture your body encourages embodiment; Stevie is here to create a pleasure mindset.

Naomi’s openness about her experience with endometriosis and chemically induced menopause was not limited to herself. It is clear even by taking a glance at her Instagram page that she strives to be inclusive, particularly through the language she uses:

“There are plenty of trans people on Instagram, and by refusing to think about your language you are excluding somebody. I was bullied as a child, so inclusion for me is a real big hot button topic. I would never want anyone to feel how I felt, when you’re intentionally left out. We do need to be mindful of the language we use. I have seen people with big followings in the endo community who have been encouraged to think about the language they use, and they reacted badly. It’s not about criticism, it’s about setting an example and purposefully including people within your 10k followers. ‘Women’s disease’, ‘women with’ are exclusionary; it’s not difficult to say, ‘people with endo’.”

Listening to Naomi speak about inclusion and the term ‘women’s disease’ reminded me of how easily dismissed books, films, and news can be if they are categorised as ‘women’s issues’. With the male experience being considered as the norm, the mainstream, anything outside of these margins seem to be trivialised, or considered niche. Can you think of any conditions which are associated with the label, ‘men’s disease’? Or are they just simply accepted as being diseases, conditions, ailments, which are deserving of awareness and serious attention? Inclusive language not only acknowledges those who exist outside of the cisgendered, heterosexual binary, but encourages people to engage with information surrounding these conditions as they affect people, not just women.

What was clear from our conversation is that Naomi has developed an acute understanding of her needs and how to ask for them. She is a strong yet sensitively empathetic advocate for those living invisible chronic illnesses, with plenty to say. You should listen.

Written by Emily King

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