For people living with chronic fatigue which is not just tired after a big day or big week it is characterised by extreme tiredness and exhaustion and for many living with chronic conditions it is an everyday reality. I describe it like wading through anything from peanut butter to wet cement, at times I have described it as walking around with a wet doona over my body. For some it means life is fatiguing let alone sex and that maintain a health sexuality solo is hard work and even more so in a relationship. Living with endometriosis for most of my life and now Lupus I am no stranger to chronic fatigue and the challenges it poses in one’s sex life.
The most well-known cause of chronic fatigue is chronic fatigue syndrome. According to the Australian Institute of Health and Welfare almost half of Australians (47%, or more than 11 million people) were estimated to have 1 or more of the 10 selected chronic conditions in 2017–18 (ABS 2018). This figure includes mental or behavioural conditions; back pain and problems; and arthritis. In the case of endometriosis for which chronic fatigue can be a symptom 1 in 9 women (more than 830000) have endometriosis.
I want to say again that fatigue is not tiredness after a long day or a bad bout of flu it really is a level of exhaustion that makes you feel like you are moving through concrete or every limb is weighed down by lead. On a bad day showering can be enough to suck all of the little energy you had out. Daily activities end with a massive sigh and a need to stop for a moment to try to muster up enough energy to move to the next thing if you are lucky. I could go on but I hope you are starting to get the point.
So how on earth do you have the energy for sex when simple daily activities are like climbing a mountain. Balancing sex and chronic fatigue can feel like an impossible task when your body is capable of achieving is vastly different from your desires. Pushing through is not the answer and your sex life is not dead. There is a sweet spot between chronic fatigue and sexual pleasure.
- Self Pleasure
Masturbation is an accessible starting point to re-engage with sex. Solo sex helps you understand how your fatigued body works before adding in another person needs. It is a good time to try positions that you would like to try with a partner to see how your body holds up, it also gives you a chance to try out tools and aids that might help you achieve different positions or activities with minimal fatigue fall out.
People that I have worked with that have chronic fatigue have different experiences with fatigue and orgasm. Some get a burst of energy; others have increased fatigue which for some can last a few days. If you are a person that is sensitive to sensations sex can be a path to overstimulation. If this is the case you can try more sensual activities like massage, sensual touch, or sensory play rather than having the goal of orgasm. Sensory deprivation which is using a blindfold or earplugs while your partner explores your body can lessen overstimulation.
- Build your toolbox
Now specific to sex this can include sex toys, but it can include so much more. For people living with chronic fatigue, gadgets and life hacks are a must. If you are anything like me you even think through the best way to do all the things on your to do list that reduces the number or steps and energy expenditure even down to the times to be on the road and the lanes to drive in on a given day and time. Energy is precious and you don’t want to waste it by doubling back on yourself between tasks or sitting in traffic when you don’t need to be.
Relating to sex it could be a support pillow, a sex toy because your hands are fatigued or your jaw is too tired to give a blow job, having a snack handy or some water or ensuring that you are supported or have something to hold on to if dizzy spells or blackouts are a possibility for you.
- Schedule sex
Scheduling sex when you have chronic fatigue is a must. Spontaneous sex isn’t out of the question but the energy you use may change the plans you have in the time after it, if that works for you go for it. However, scheduling sex is your friend. If you know that your body needs ample rest time before and after sexual activity, schedule specific times for potential sex. You do not have to have sex every time you schedule it, you don’t have to push through a bad day but scheduling time for sex, solo or partnered will make it easier to balance fatigue and pleasure.
- Communicate what it means to you
Talking about sex is scary for most people let alone sex and chronic illness symptoms. There is fear of rejection, and you wouldn’t be alone if this has made you push through with consequences that were far from worth it. No one is obligated to share their medical history, no one should push through for the sake of a partner and to the detriment of their health. However, sharing how symptoms could affect sex to your partner(s) protects you from pushing your body to far. Remember no one else has to live with the consequences of your actions but you so look after yourself.
- Acknowledge the grief and embrace your new body
Grief is inevitable when you are living with a chronic illness. Your body changes it can feel like it is not your own, so making time to process grief and other feelings that come up is an important part of building resilience and making the most of life in the face of chronic illness. Unresolved feeling of grief, fear, guilt and rejection are energy drainers and can make other symptoms worse. Working on acceptance, self love, resilience and embracing your body for all it is still capable of can allow you to come to a point where fatigue and pleasure can coexist.
An extra note on sex toys in your toolbox
When purchasing a sex toy you may want consider things like weight, measurements, reach, how much of the vibrations transfer back through your hand etc. If a toy is too heavy or cumbersome, it could make the fatigue and sex issue harder rather than easier.
As a sexologist and a person living with chronic illness of which chronic fatigue is a symptom I can tell you that your sex life is not over, there are ways to ensure it remains and important part of your life and it can even be better than what it was before.