Speaking with Your Partner about SCD

Finding a spouse or partner can be especially stressful for people with SCD. Different aspects of the disease make dating more complicated. However, people with SCD are not inferior partners, and most dating problems are caused by the partner’s lack of readiness and understanding.

Healthy relationships can be a source of comfort and emotional support for people with SCD. Talking about the disease early and often with your partner is helpful. It can bring you closer to your partner and help you stay physically and emotionally healthy.

How does sickle cell disease affect dating?

Dating is difficult for anyone, but it can be especially daunting for people with SCD. Not every person is able to date someone with SCD. This has nothing to do with you. It has more to do with the emotional maturity, compassion, and reliability of the other person.¹

SCD affects dating in many ways. People with SCD report that the disease impacts relationships when:^2-4

• The partner has misconceptions about SCD
• Intimacy and sex become stressful because of SCD complications
• Complications and hospitalizations require the partner’s support and dedication
• Anxiety and depression affect communication and other aspects of the relationship

Dating with these burdens may seem overwhelming, but SCD does not make you an inferior partner. Many people with SCD find that healthy and loving relationships are possible, and that they make living with SCD easier.¹

How should I talk to someone about my disease?

It is good to talk about SCD early in the dating process. Within a couple months, tell them you have SCD and give basic information about the disease, including:¹

• How it affects your daily activities
• What complications you face
• How it is spread or passed down
• How it may affect your relationship

They may be overwhelmed and unsure of what to do during this conversation, but afterward, they should act in a way that makes living with SCD easier, not harder. Some qualities to look for in people include:²

• They do research on their own about SCD and its treatments
• They check in with you regularly out of genuine concern
• They show interest in going to doctor’s appointments with you
• You feel comfortable talking to them about your struggles
• They comfort you during painful episodes
• They remind you to keep drinking water
• They are considerate of you when making plans
• They are considerate with regards to sex and intimacy

Every person with SCD and every relationship is different. All healthy relationships face different obstacles. The best thing to do is to talk about SCD early and often. Set a high standard for yourself in terms of the level of compassion they show. And remember to also give them appreciation, love, and compromise.

What should I tell my spouse or partner about complications?

Talk to your partner or spouse about complications so they know how to help you prevent or manage pain episodes. They should be aware of doctor’s appointments or hospital visits. Most importantly, they should be considerate of how complications affect your daily activities, mood, and needs.

You and your spouse may also want to know and discuss both of your sickle cell statuses. This can help determine the chance of a future child having SCD. For example, if you have sickle cell anemia (HbSS) and your partner has normal hemoglobin (HbAA), there is no chance of your child having SCD. However, your child will have sickle cell trait (HbAS). You may want to seek the advice of a genetic counselor (a medical specialist in genetic disorders like SCD) when planning to have children.⁵

Studies show that a spouse or partner is not the only helpful person to talk to. People with SCD find it helpful to pray and talk to their religious leaders, doctors, mothers, and close friends. Open and supportive talk with parents, doctors, and other friends and family members is beneficial. People who value talking about SCD with their partner or another trusted source are more likely to:⁶

• Contact a doctor for future pain episodes
• Go to the hospital or ER for a pain episode
• Take opioid pain medicines for a pain episode
• Ask for help from family or friends