Navigating sex and intimacy with a chronic illness like sickle cell disease

In a society that’s seemingly obsessed with sex and physical intimacy, you may be surprised to hear that there aren’t many resources available for those with chronic illness and physical limitations. So let’s talk about it.

Sickle cell disease is one of many conditions that can affect physical intimacy. Studies have found that chronic illness and disability can lead to significant sexual dysfunction and dissatisfaction among patients, due to factors like physical limitations, medication side effects, and psychological distress. A lack of discussion about sexual health from healthcare providers can further compound these difficulties. As a patient, it’s easy to feel alone and misunderstood when trying to navigate sex.

While sickle cell may present differently in every patient, a common trigger of sickle cell crises is physical exertion. This is often spoken about in reference to rigorous exercise, but it can absolutely include sexual intercourse. Pain, limitations, and other symptoms can affect a patient’s ability or desire to have sex. Additionally, patients may be distracted if they’re worried about experiencing sickle cell complications while engaging in intimacy.

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These barriers can result in decreased enjoyment and sexual satisfaction for both patients and their partners. This, in turn, can have a detrimental impact on a person’s quality of life and ability to maintain romantic relationships or sexual partnerships.

Another issue is that male sickle cell patients are susceptible to priapism, a long-lasting erection that isn’t always related to sexual desire or stimulation and can be painful. In a society where seemingly unwarranted erections are often stigmatized, consider the impact this issue could have on male sickle cell patients.

Advice for sickle cell patients

You deserve a good quality of life, including a healthy sex life, if you so choose. Sickle cell does not make you less worthy of this; it’s just an added thing to work around.

Know your body, physically and mentally, and any potential side effects of your treatments and medications. Consider adjustments that could improve your sexual encounters. For example, if you struggle with chronic pain, using cushions or chairs might make some positions easier. Or, perhaps you need to avoid certain positions altogether. Keeping a pain diary or journal can help with identifying trends.

If you speak with a therapist or counselor, you may wish to bring your partner along to improve communication and intimacy. If you experience persistent issues, please consult your medical team.

Advice for sexual partners

Take a step back and consider how potentially embarrassing it could be for a patient to experience a crisis during sex or be unable to do something due to their physical limitations. If your partner is a man, think about the societal stigma attached to unsolicited erections and how this might affect him if he experiences priapism. Putting yourself in your partner’s shoes can make it easier to navigate your relationship with care, empathy, and compassion.

Remember, there is no one-size-fits-all approach. Each sickle cell patient is unique, so it’s imperative to speak with them about any requirements or limitations they may have. Educating yourself about the disease is a great step, but be sure not to project what you read onto the patient or make any presumptions about them.

Allow the patient to communicate their boundaries to you. For example, a person with sickle cell may or may not be open to having sex while experiencing mild pain. But you won’t know their preference and what they’re comfortable with if you don’t discuss it. I don’t think this is a one-time conversation, either, but rather something to talk about regularly, especially with any health changes. 

Good sex requires comfortable participants.

Advice for healthcare professionals

An imperative first step is to remove any taboos around talking about sex. This can be done by creating a safe space and permitting the patient to speak with a medical professional of the same sex, if requested. If you’re a different sex from the patient, it may be worth inquiring if there’s anything they’d like to speak to a different provider about. This is because patients may not feel empowered enough to express their needs and desires.

Additionally, being knowledgeable about how sickle cell disease, its complications, and its treatments can affect libido and sexual performance would be helpful. Being able to direct patients to support and resources would be a plus, too.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.