Content warning: this post is about sex and relationships and mentions/covers sex and masturbation.
Caring for someone, or having someone care for you, can be the most intimate of relationships. Having someone help you with personal care like bathing or washing your face is incredibly intimate. But what about the other forms of intimacy within romantic relationships?
I recently asked my Instagram community for their input on this topic, asking them to send in questions they would like the community to answer on the topic of relationships, sex, and intimacy.
This is a really lengthy post but I decided to keep everything in one blog post so everything you might want to know, is in one place.
A huge thank you to you all for being so open, honest and trusting in sharing both your questions and answers. It has felt quite emotional, and a privilege, to be privy to the vulnerability shared online in a recent community input question and answer session I did on Instagram.
These answers are largely verbatim, slightly edited in places for clarity. It’s not the most finessed post, but the idea is simply to show you that you aren’t alone in how you’re feeling.
How do you go about dating when energy is limited? Energy is so precious I don’t want to waste it!
Responses included:
“Video calls with the person first, to see if meeting up is worth my energy.”
“I only date other disabled people.”
“Carefully planned and time limited in advance – of they can’t organise themselves for that, they’re not worth it.”
“Video coffee dates and Skype speed dating were good as first dates for me.”
“Online dating.”
“Chatting via text, app, or phone call long enough to decipher if this person is worth the extra effort of meeting in-person.”
“Dates that were watching a movie together, or playing a game. Either virtually or in-person at my home. These helped feel out if I wanted to share more energy on ‘real’ dates [leaving the house].”
“Changing my view on what a date is – bringing coffee and sitting on the deck/patio for an hour was a great date!”
“Home dates. Having someone over to my house rather than meeting them in a noisy, busy café for example.”
“I don’t sadly.”
“I used dating apps. I found it fun to interact and read profiles when I could.”
“I don’t. I’ve given up for now because it’s too hard with energy deficit and covid precautions.” Covid and shielding covered in a later question.
“Lots of online talk, virtual dates, etc before meeting in person.”
“Paid dating services, like Match.com. If they’re paying they’re more serious about it all usually.”
“I met my partner through activism.”
“I met my partner by chance and we are mostly long distance which suits my chronic illness very well.”
“It’s meeting myself where I’m at (in dating or not/not yet) and trying to keep it light/easy.”
“Make it clear you need someone with patience who’s flexible. There are good ones out there.”
“I don’t. I can’t maintain existing friendships let alone strike up a new connection.”
NB. Please consider your safety when meeting people at your home or their home alone. I made sure friends and family knew who I was with, their name and address, etc
When do you raise your illness with someone new?
Multiple replies saying people include it on their online dating profile.
“I put long covid and ME/CFS on my online dating profile.”
“I explain my disability on my profile and don’t meet up immediately. This helps weed people out.”
“I raised it when it came up naturally in conversation (usually quite early on). I found it reaffirming because I was surprised how nice people were. One I’m still with five years later and haven’t been happier.”
“Usually within the first conversation as the first questions always tend to include “What do you do [for work]?” Some people bolt immediately, the trash taking itself out!
Best low energy sex positions?
Nearly all the replies to this one mentioned altering your view on sex, and moving away from penetrative intercourse.
“Don’t focus on penis in vagina, focus instead on sensuality and intimacy like being naked together in a warm bed. There are others ways to reach orgasm if that’s what you’re after.”
“Sex toys are lower energy friends! Nothing shameful or taboo about using them to save energy.”
“Missionary”
“Spooning.”
“Using pillows and supports so my head and limbs are as supported as possible.”
“Taking multiple breaks. It prolongs the fun!”
“On my stomach with a pillow under my hips.”
“I bought a sex pillow wedge. They are very helpful.”
“Surprisingly being on top regulates my heartrate better because of muscle movement in my legs. Just go slow.”
Tips on communicating about sexual needs and desires.
“I use the Paired app. It’s amazing – quizzes on everything daily that you both do. So good!”
“Try to phrase things positively – “I like when you…” or “I prefer…” to reckon with criticising.”
“Traffic light system for when words are hard. Tapping out when words are impossible.”
“We love to joke about anything that makes us feel awkward.”
“Talking sitting back-to-back rather than face-to-face.”
“Watching talks/video essays/films together and then discussing the parts you want to try.”
“Using a ‘show and tell’ approach.”
“Texting/emailing gives me more time to think and answer than talking in-person does.”
“Having safe words and checking in on each other during sex works for us.”
Any advice for dating when you are so reliant on your parents and you live at home with them?
The consensus was that this is a tough one. I was 26 and living with my parents when I met my now-husband.
“Talk to your parents about how involved you want them to be; when you want to talk about what, even if they drive you to meet your date or have a date at home.”
“I had to reiterate a couple of times that I’m an adult and need to be trusted and treated as such.”
“My parent told me I was “a lot to take on” when I debating breaking up with an ex and told me I should reconsider.”
“I hate it. My mum is so protective of me and I also cannot get comfortable having sex when she could hear us. Plus I don’t want her to see lube/sex toys when she comes into my room to do my care, so I’m constantly paranoid about that.”
“Ask if they could leave the house for a few hours while you have a home date.”
If you were in a relationship before you became chronically ill, has it changed your dynamic?
There was a lot of yeses to this one, but not necessarily because of a negative shift in the relationship’s dynamic.
“Getting sick has strengthened our relationship, bar me being too sick for sex.”
“We have grown together and adapted.”
“I was in a relationship where the other person relied heavily on me for practical and emotional support. When I got ill and we broke up because they felt I “wasn’t putting enough effort into the relationship.””
“My partner now has a hard time saying no to anything I ask. He’s learning to put himself first sometimes.”
“Yes, for me it’s more of a conscious effort to have the silly moments when I’m feeling well enough.”
“I used to be so independent but now my partner does so much or me. It makes me love him more.”
“Yes, we’re now just platonic partners.”
“The effort he makes to care for me have definitely brough us closer/softened me.”
“Our relationship became more serious as a result of me getting ill.”
“I feel like my partner has stayed the same but now I feel completely different.”
“Yes but not in a completely bad way. Things are shit but we are closer in some ways.”
“No not at all.”
“I stayed [in the relationship] when I wouldn’t have pre-illness because I thought he was all I had.”
“My husband wants me to be the old me. He has totally withdrawn from the relationship.”
“He’s treated me so appallingly since becoming chronically ill. We’re not even like roommates or friends.”
“It did, they developed a hero complex!”
“Yes, but I don’t know hoe much of that is my guilt over an imbalance [within the relationship].They have no issue supporting me.”
“It’s given us a level of intimacy and understanding that I never had with anyone else.”
“It feels so much less balanced. It is hard to be so reliant on someone. There’s also no spontaneity anymore.”
“Yes, they’ve taken on a carer role hence the shift.”
How do others deal with less sex during a flare or feeling like you’re letting your partner down sexually at times. How do you let go of the guilt that you are the ‘problem’ or the cause of the lack of intimacy?”
“I try to remind myself that nobody should be demanding sex from someone who is ill.”
“You don’t owe anyone sex. Look for other activities that you both enjoy that brought you together.”
“Talk to them about your feelings. Hopefully they will be supportive and understanding.”
“I just don’t have the energy to look after my own basic needs consistently. I’m doing the best I can.”
“Explain how you feel.”
Yep. I can relate. Being open about it helped and clarified that I was still interested; I just can’t!”
“Remind yourself that your partner loves you no matter what.”
“Put your health first and your partner will understand if they are worth staying with.”
“It is very difficult but talking about it openly helps us find ways we can connect.”
“I try to have open chats with my partner about the lack of sex and they say they’re fine with it. I still feel guilty though.”
“Your worth in a relationship doesn’t come from how much sex you have with your partner.”
“I still struggle with this.”
“We found couples counselling to be very helpful in addressing or talking about these issues.!
“Make sure you’re both getting your intimacy needs met in other ways. Naked cuddles in bed works for us.”
“Be involved in small ways. Cuddle while they ‘take care’ of themselves for example.”
“We didn’t get married for the sex.”
Is it even possible to date when shielding Covid cautious or housebound?
“Asking them to test on the day of meeting up.”
“There’s an app for covid conscious people for friendship and dating called Refresh.”
“It is difficult but not impossible.”
“It is but it’s incredibly hard and expensive.”
“I did a bunch of dates on the patio, sat distanced from each other.”
“It’s very difficult, but it is possible to find people who understand and are willing to test etc.”
Have you and your partner done couples counselling?
“My ex and I tried but we were beyond repair.”
“Yes and it was hard to find a therapist who understood disability.”
“No, but we have had it individually and it’s amazing.”
“Not couples therapy but we have individual therapy. My partner goes mostly for work stress but also stress from my illness.”
“Yes! It’s wonderful, of you find the right therapist. Even if your relationship is doing well.”
“My current partner and I both do individual therapy but I definitely want couples therapy in the future.”
“No, complex synchronous conversations cost me too much so therapy is inaccessible to me.”
How do you navigate not having energy to have sex and when you do it being painful?
“Communication and respect is key. If it’s too painful, stop. Explore other options aside from penetration.”
“Stay away from the idea that sex means penetration, and focus on gentle intimacy.”
“Foreplay for us involves strong painkiller which is frustrating as they dull the sense and responsiveness.”
“Sex is now rarely spontaneous so I can rest before and after…hours or days whatever is needed.”
“Like with everything else, I decide if it’s necessary for my mental/emotional health.”
“Keeping it short. Set a timer, and if you’re not finished use your hand!”
“Pelvic physio has helped a bit but I needed to be that but ‘better’ physically before I could try it.”
“Changing the goalposts. Love/intimacy being the aim over performance/orgasm. Great if orgasm happens but it takes the pressure off and focuses on connection.”
“I end up just ignoring the pain and paying for it later in a darkened room.”
“Open communication. The desire and passion is still there even if symptoms make it impossible.”
This is POTS specific but how do people manage when even kissing or solo play makes me tachycardic?
“Lots of fluids before and after. Salty snacks and meds after.”
“Being flat or with my feet uncovered helps(temperature regulation plays a big role for me).”
How does chronic illness affect your loved ones when they see you struggle with a flareup?
“They find it hard and don’t cope well, especially if a crash is prolonged. They get very down and worried.”
“They speak to friends who’ve had the disease in their loved ones lives because other people just don’t ‘get it’.”
“I worry about this; the guilt and the feeling a burden is constant.”
“It’s harder on them than they let on. I encourage them to speak to their friends about it, and have time away (even a few hours) when possible.”
“They get stressed which then makes them distant.”
“They get sad when I’m sad. Also I talk a lot [about symptoms and their impact] to process and that’s not always easy for them.”
“I know he sees I’m struggling when he gives me more compliments.”
“Everyone in the house is traumatised in some way by my illness. My wife and children all see counsellors to talk through their anger and grief.”
“My partner and I are both autistic. They had a meltdown last week because I was so fatigued.”
“They jump in with known remedies, give me quiet and space to recover.”
“Some people around me just freeze and don’t know what to do.”
“It’s hard when my partner flares at the same time.”
Tips for dealing with PTSD and safety in intimacy – CW for mention of sexual assault
“Take things very slowly, the right partner will go at your pace.”
“Honestly, my partner being impotent was the only way I felt able to start dating again.”
“Safe words and gestures, being aware that you/your partner is susceptible to change in those times.”
“Communication and practice are absolutely vital.”
“Communication and finding someone who checks in a LOT.”
“I’ve done EMDR therapy for PTSD related sexual assault and found it has been super helpful.”
“Let your partner know as many of your needs as you can communicate. Have things ready for during/after that make you feel safe/grounded.”
“Practice stopping midway through so you know you can.”
Do other people feel sickness has altered their relationship with their body and their sexuality?
A lot of yeses here.
“With my body, yes, I’m more neutral now and appreciate certain things about it. I used to be very critical of it.”
“It’s hard to trust my body now. I used to be able to act without thinking. Now anxiety often gets in the way.”
“Yes, especially because I’ve put on weight.” There were several answers mentioning weight gain
“I was a dancer so illness has changed my body and that makes me sad sometimes.”
“Yes. So drastically. I was such an initiator with sex and so exploratory. Now I feel repulsed by sex.”
“Bigtime! I often separate from my body because it’s a hard place to be in.”
“Definitely. It’s hard to be positive or even neutral. It’s a constant struggle.”
“I think it’s enabled me to shed some awful ideas about beauty and sex and my value.”
“I’ve struggled with feeling like the sexual person I naturally am because of how I feel and how society views me.”
“Yes, but in a good way. I’m more aware of my body and appreciate it much more now.”
“Massively. My body has changed shape and I do not feel sexy or myself at all.”
“100%. I’m very aware of the fact my body looks/acts/feels different to how it would if I wasn’t chronically ill.”
“Yes. Mostly wrapped around feeling like a burden so how could anyone ever want or be attracted to me.”
“100%. The worse my health, the less I feel like a person (let alone a sexual person).”
“I don’t view my body as something that someone would ‘want’ or desire as it feels so broken.”
“100%. My body has become completely medicalised and I struggle to see it any differently.”
“Fluctuating body changes due to sickness have contributed to a loss of self confidence.”
“Makes me feel very undesirable. I also have a high sex drive but zero energy. That makes me miserable!”
I’ve had both in person and online romantic relationships since being unwell. How do you manage wanting to have sex whilst crashed? Does your partner assist you or do you resist the urge to have sex while crashed and if so, how?
“I generally push through then have a bigger crash.”
“I’d say get a powerful vibrator if it’s an orgasm that you want. Otherwise opt for naked hugs.”
“Relearning what sex can be has been good for me. There’s more to it than just penetrative sex.”
“I try to work out if sex is really what I’m wanting or if it’s something else like physical relief, intimacy, or distraction and if that can be achieved with something else.”
At the moment we don’t really have sex and I think we’re both a bit scared. For me it has become a sensory issue. We’re both a bit hesitant to get back to it. Any input on how to overcome this would be helpful or any tips on how to navigate sex when low on energy and or sensory sensitive.
“Definitely making sure the definition of sex is as broad as possible!”
“Masturbation, using sex toys, and finding other ways to be intimate.”
“We’re the same. It’s too risky. You can’t relax because both of us worry about the consequences sex will have on my health.”
Any tips for regaining interest in sex? My history of PEM after sex has taken its toll.
“Start small. Mutual masturbation is a good start. Then set time limits and slowly increase each time.”
“Very gentle stroking, massage, get the pleasurable tingles going.”
“It’s been years and years since we’ve had sex or been able to. But we do so many of the other relationship things. Try not to think about how long it’s been.”
Tips on how to deal with sex/intimacy when washing is tricky and exhausting?
A lot of responses said they were grateful for this question.
“I worry about physical intimacy with severe M.E. because of the lack of cleanliness.”
“No rinse body cleanser! It’s made for camping but is ace for chronic illness.”
“Get a partner who’s primal and whose sense of smell never recovered from covid!”
“Wipes. Baby/bathing wipes are on my nightstand. I use Lume wipes afterwards.”
“If it’s possible/an option, a partner who washes the other in sensual way might work.”
“This is one of the biggest factors that stops me from sex/intimacy. The lack of being able to wash regularly. Then if I’ve washed, I’m exhausted am. We do find my husband washing me (wet wipe or hair wash) is very intimate in itself and can bring some joy to us both. The closeness and care can be intimate.”
“I’ve also got greasy hair, don’t smell good, etc. Glad I’m not alone.”
“My partner helps me shower before and after which helps.”
“I find this hard in terms of breath. A combination of medication and being ill have made my mouth and breath gross and I’m paranoid about it. I can’t tolerate strong mouthwash etc, so have to manage within what I can tolerate. It’s a constant issue.”
'M.E. myself and I' by Anna Redshaw 