I’ve heard many patients talk about how they can’t have sex any more due to pain, fatigue, lack of libido, or just the fear of their own bodies. They say it’s affecting their relationship.
Hidradenitis Suppurativa takes so much from us, we can’t allow it to interfere in our relationships as well, that’s just not ok. It’s time to be stubborn, stick two middle fingers up at illness and have a fulfilling, intimate relationship with our partners despite it.
So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when H.S. tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.
Find ways to keep the mental intimacy alive.
Understandably, this may or may not be plausible in a physical sense. Luckily, we can opt for mental intimacy instead, which is just as important for maintaining healthy relationships. One way to bond mentally is to read together before bed. Another option is to meditate or pray together.
1. Do something together at least once a month. Whether it’s getting in some alcohol-free wine/beer, watching a romantic movie or having dinner together, make the time to spend a couple of hours together not talking about family, the illness, etc. Even a gentle stroll on the beach or through the woods while holding hands can be just enough to keep that flame a-flickering.
2. Communication. Communication is everything, talk about who initiates and how that makes both of you feel, about how rejection of advances feels and what you can do to get around these issues. Should only the sick person initiate? What can be done to redress the power imbalances in your relationship? Talk talk talk and then talk some more. Openly and honestly. Sex can be difficult to talk about. Begin your sentences with “I” rather than “you.” For example, “I feel loved and cared about when you hold me close” is more likely to invite dialogue than “You never touch me anymore.”
This is the time for both of you to talk about your fears and desires. You may think that your partner has stopped touching you because he or she has lost interest, or finds you undesirable. Instead, your partner may be fearful of causing you more physical pain or discomfort.
Consider your spouse’s opinions on important matters. Communication with your spouse also includes the discussion of significant procedures or medical decisions. Talk with your spouse before making any major choices—even if you assume you already know what he or she will say. Simply making the effort to include them in the process of your medical care shows that you still respect your mate and value his or her opinion.
Practice active listening. Effective communication is vital to all relationships. However, in a relationship where there is strain due to a medical condition, it’s essential that you both are on the same page. If one spouse doesn’t feel heard, it can create more problems. Both of you should strive to listen to one another with the following strategies:
Be mindful of body language. Refrain from showing “closed” signs like crossing the arms or legs. Keep the body open and responsive with arms and legs uncrossed and your body leaning towards the other person to reflect attentiveness.
Give your partner your full attention by removing any distractions. Cell phones, TVs, and children should be in another room so that you can fully focus on your partner’s message.
Listen completely to what the other says. Resist interrupting.
Paraphrase what you heard by summarizing it or asking clarifying questions (i.e. “Are you saying…?”). Use feeling words, such as “It sounds like you’re upset.”
Provide a non-judgmental response after you have gotten the other person’s message.
Have trouble-free conversations. Couples who are dealing with one spouse’s health issues may find themselves living and breathing medications, doctor’s appointments, and financial strain. This means communicating with one another about topics that are interesting, not just mandatory discussions to manage a household or an illness. Choose one or two times in a week to sit down with your spouse and talk about non-stress-related subjects. This can include planning a vacation, discussing movies or books, or even flirting with one another. Just be sure to find a middle ground in your communication and keep some of your discussions light and carefree.
Avoid negative thinking traps. It can mean doom for your relationship and your health if either or both of you falls into negative thought patterns. In fact, research shows that having a more positive outlook can lead to greater well-being for those with chronic illness.
Fend off negative thinking by:
Taking it one day at a time. Don’t worry about what tomorrow may bring—live for today.
Rejecting “why me?” or “why us?” questioning and gain acceptance of H.S.
Not using the word “problem.” Use “challenge” instead and your thinking will immediately change to solution-focused.
Celebrating every milestone or achievement. (Its okay to celebrate getting out of bed, if that is a little win for you, then celebrate it!)
Cultivating your passions and interests so that you regularly participate in activities you enjoy.
Turning to your spirituality.
Remembering that value or worth is not based on health and well-being. Identify other positive aspects of your life beyond health.
3. Get intimate. So maybe intercourse isn’t a possibility right now. No problem. Sometimes what we need is the intimacy behind the act more than we need the act without the intimacy. Yes, sex can lead to intimacy. But we don’t have to have sex to be intimate. Share your wildest hopes, dreams and fears. Get creative. Celebrate one another with your bodies. Intimancy is just closeness, or being personal, and that doesn’t need to be in a physical sense. Strip yourself emotionally, be vulnerable, let yourself let someone in.
Remember you aren’t the only one who feels pain.
Sometimes we get so caught up in our own pain that we forget about the pain our partner is feeling. While his or her pain may be different from our own, it is nonetheless real. By ignoring their hurt and focusing solely on our own, we double their pain. Try one of these ideas to help break down those walls.
I love you. Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night. Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!
Be grateful. Being appreciated is sexy, and that’s all there is to it. We all want to know we’re seen and appreciated. Call your spouse and thank them for working so hard. Send an “I really appreciate you getting up with the baby last night.” text. Let them know how much you value the fact they made dinner. (Yes, even when it’s burnt.) Gratitude is sexy.
Be affectionate. Those little, affirming touches go a long way! Hold hands. Kiss. Cuddle. Even if it feels unnoticed or unreturned in the beginning, keep going! Think of it like a campfire. Keep nurturing and stirring the fire, until it burns the whole place down and turns Smoky the Bear into Smoky the Angry Bear.
Be kind. Maybe you are wondering if I knit gloves with my Grandma on the weekends, and it’s starting to affect my judgment because, “What the freak does this have to do with sex?” Everything, actually. We all want a partner who treats us with kindness and respect, who speaks to us like we’re the coolest thing since sliced bread and makes us feel like the best version of ourselves. Compliment one another. And watch the magic start happening.
Designate “technology-free” times.
We often want to escape our pain so badly that we’ll do anything to distract ourselves from it, and spend hours absorbed in technology. When we leave the reality of our illnesses behind for the virtual world, we leave our partners behind as well.
Make your couple time sacred. Just as you and your partner’s health is a top priority, maintaining your bond should be, too. Whenever possible, schedule in some one-on-one time to “date” your spouse like you did before marriage.
Go for a walk in the park. Watch a sunset together. Plan a romantic candlelight dinner. Don’t just wait around hoping for time to connect with your spouse. Plan it, execute it, and protect it from interruption by kids or other obligations. That’s the only way your romantic life will stay a priority.
I haven’t seen this written anywhere, but in my opinion, laughing with your partner is also intimate and helps you feel closer. Try playing a card or board game with them, something that’s free from outside distractions and just the two of you. You’re probably thinking, how can playing Monopoly make me laugh? You could rename the streets with rude names for a start. Or make your own counters that resemble something funny. Or borrow monopoly money from your loved one in return for stripping off an item of clothing…
Spend time in solitude.
While this relates to spending time alone, it is in no way related to unhealthy coping mechanisms such as isolation. Spending time in solitude is meant to serve as a peaceful experience of inner reflection. You can’t give your partner what he or she is worthy of unless you discover what you are worthy of. In all things, we must love ourselves to truly love others. We must fix our own inner conflicts to fix ones with others, romantic relationships included.
Meditation and yoga are great for this, as is spending time in nature with zero technology. There’s no clear-cut path to accessing inner stillness, the path to inner peace is highly individualized.
Navigate your way down the one you are drawn to, rather than the ones society insists you take. Only then, despite pain and suffering, will you be able to fully open your heart and give love to your partner amid the darkness chronic illness often breeds.
Find shared passions.
If one of you is chronically ill, you may think “I don’t have time for a hobby.” As frustrating as it can be, you must make time. You can dive into your relationship and your mental health all at once with the help of a hobby. A shared hobby can increase the bond and deepen the spark between you and your spouse. Hobbies also help both of you fight stress. Any activity that engages the both of you is up for consideration. If you both are physically capable, you could sign up for a dance class. Other options include painting, fishing, cooking, hiking, or doing home DIY projects. It doesn’t matter what you do, just as long as you do it together.
Do something nice for each other.
It doesn’t have to be a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find. Make a playlist of all their favorite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.
Go on a weekend break/holiday.
If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid). A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with Hidradenitis Suppurativa.
Of course financial and health issues are no reason to wreck the mood, so if a vacation halfway across the globe just isnt for you, then think locally. Is there a bed and breakfast close to home that you could plan a trip to? Even a night at a hotel can feel like you have your own personal love suite when your home life is filled with doctor appointments.
One thing you’ll find is you both have a shared passion for each other. And sometimes, reconnecting with that is all we need to get a spark going into a full on flame.
Touch each other often.
Touch is the first form of communication that we learn as humans. Many would argue that it remains the most fundamental. When one of you is ill or hurting, you may not be able to find all the right words to say. However, offering your touch can help ease your partner’s worries about the health condition and create intimacy between you.
Touch between partners can be as simple as a loving caress as he sits down to pay the bills, or a kiss on the forehead as she lies down to rest. If you are physically capable, also try to keep your sex life alive and well. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
When you’ve been with someone a long time, sometimes you genuinely forget to kiss – even if you’re not chronically ill. When you’re so busy concentrating on your illness and/or family life, it can be easy to forget to just stop and have a moment together. A study recently found that kissing can lower cholesterol levels, decrease stress and increase relationship satisfaction. 
In my experience, when people say ‘sex’ they generally mean ‘intercourse’. Here’s the thing, sex isn’t just about shoving something into your hoo-ha and pumping it in and out. It’s about physical intimacy and pleasure, about bonding with your partner. You don’t need pumping action to achieve this, you’re not trying to achieve a fully inflated car tire after all. Thanks to the awesome pathology of Hidradenitis Suppurativa, we are often covered in scars and wounds on our most intimate parts, making sex one of the last things we want to think about. If that the case with you, exploring different options is probably nothing new for you.
If intercourse is an option for you, try different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
If genitals are off limits altogether, there’s a whole other world of ways to be physically intimate.
If you’re more of the spontaneous type, try this! I know your mother told you not to, but maybe what she doesn’t know won’t hurt her? This is an opportunity to create build-up and anticipation. Your partner doesn’t have to know you’re doing this in between ordering more toilet paper from Amazon and catching up on Grey’s Anatomy. This requires no makeup and pajama’s are actually encouraged. Text your sexbomb partner when they’re at work and tell them you’re completely naked, covered in oil and need a pair of strong hands to rub it all in. I can assure you, they won’t be popping into the supermarket on the way home, so only employ this on days where you don’t need them to buy milk on the way back.
A word of caution: make sure your phone is password protected and you don’t accidentally text your boss that steamy text intended for your significant other.
Get some nice oils, light some candles and help get those pesky knots out. Please do be careful if you’re massaging someone with a hypermobility syndrome. – the last thing you want on your romantic night is to end up in the emergency room!
Massages are a personal favourite. Not only do they increase circulation and promote detoxification, but the skin to skin contact produces oxytocin – the bonding hormone that is also produced in sex.  Massages can come in all flavours – purely medical, purely sensual, or a combination of the two. They can even get a bit raunchy. You can investigate different types of massages, back, shoulders, legs, feet… different oils, get the candles out, it’s a whole world of getting the warm and fuzzies.
Personal grooming is also an intimate experience, why not share it with your loved one? You could try taking a shower together, shaving each other, plucking each others eyebrows, painting nails, an intimate sponge bath, or lotioning each others bodies.
Masturbation is a normal and healthy way to fulfill your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active. Or watching while your partner masturbates may likewise be sexually arousing and benefitial that way.
If you’re up to it, try oral sex. It can be an alternative or supplement to traditional intercourse. Oral sex is sexual activity involving the stimulation of the genitalia of a person by another person using the mouth (including the lips, tongue or teeth) or throat.
No, it’s not a type of cheese, it’s a sex thing and it can be rather enjoyable. Frottage is sexual rubbing or non-penetrative sex. I know the name is strange, but the idea is pretty basic. Essentially heavy petting with clothes on, which can be pretty erotic.
Be inventive, have fun and enjoy each other. Sex is playing for adults, it’s not about doing it ‘right’ or being as efficient as possible in getting from A to O. Have fun! Work out what you can do, and build something intimate from that.
Think outside of the comfort zone.
Of course the first thing you think of when it comes to “romance” is scheduling clinical appointments right? I didnt think so. Sometimes you just have to admit that it’s going to take more than DIY options, and in those situations its a good idea to start thinking outside of your comfort zone. Many times we are most comfortable with those closest to us, and turn to them for relationship advice, but we often forget to include our own medical teams in that category. The best thing about turning to your medical team for help is, they have heard it all before. There is no such thing as an embarrassing situation with your doctors, and in this case, thats exactly what we need.
Go to couples counseling. If you and your partner are having trouble adjusting after a serious diagnosis, it can be helpful to attend marriage and family therapy. A therapist can help you identify potential challenges and brainstorm solutions. This professional can also help you and your spouse develop better communication skills and have ideas to help improve intimacy.
Talk to your doctor. Most medications can suppress desire. If you feel your medicines have a lot to do with your dwindling sex life, talk to your doctor about your concerns.
Sometimes pain is the direct cause of sexual problems. You may simply hurt too much to consider having sex. Adjusting your pain medication may be the solution. If your pain is so severe that sex seems out of the question, talk to your doctor. You may need to adjust the timing of your medication or create a different or stronger pain control plan.
Alternatively, certain medications, particularly pain medications, may cause sexual problems. Some medicines diminish sex drive (libido) or inhibit sexual function by causing changes in your nervous system. Drugs may also affect blood flow and hormones, which are two important factors in sexual response.
Tell your doctor about any medication side effects that seem to be affecting your sexuality. Your doctor may be able to recommend an alternative medication or adjust the dose of your current medication.
I dont have all the answers, and am certainly not a sex therapist, but I know I’m not the only one with Hidradenitis Suppurativa that has had to get creative. Don’t let illness take something away from you, without replacing it with something else, something you can do.
No matter what you attempt, please try to remember to love yourselves. Chronic illness is hard enough without us being our own worst critic.