Written by: Benie - Coaching Team
What is Sickle Cell Disease?
Sickle cell disease (SCD) is the name given to a group of inherited health conditions that affect the red blood cells. Symptoms include painful episodes, frequent infections and anaemia. Painful episodes also known as sickle cell crises occur due to the red blood cells being shaped like sickles leading to blood vessels to parts of the body to become blocked. This severe pain can last from several days or weeks and the frequency of painful episodes varies from person to person. Sickle cell disease is most common in people from Afro-Caribbean backgrounds.
How might SCD impact relationships and intimacy?
Symptoms of SCD can have an impact on emotional and social intimacy. As the physical pain can lead to feelings of isolation, stress and fatigue. People with SCD may feel as though they are a burden on others and may not want others to see that they are struggling, so choose to conceal their pain. This could also lead to withdrawing from social events in fear of being seen as unwell or interrupting peoples plans. Leading to friends, family and partners excluding them. Furthermore, not sharing how their pain affects them could make people living with SCD feel less connected to loved ones.
SCD can negatively impact physical intimacy including difficulties with sex life. People with SCD may also experience painful episodes during sex which compromises sexual pleasure. Additionally, Sickle cell crises effects people's sexual desire which can feel frustrating for the individual and their partner. This could be difficult to talk about with a partner as the person with SCD does not want to feel like a burden and the person without SCD does not want to appear as lacking compassion. This could lead to partners becoming more distant. Furthermore, people with penises may experience priapism which is an unwanted erection that last more than 30 minutes. These are not caused by sexual arousal or stimulation; their unwanted nature can cause psychological distress and contribute to stigma that already exist around unwanted erections. Additionally, priapism can prevent people with penises achieving an erection when they want to due to the tissues in the penis being scarred and damaged leading to difficulties with physical intimacy.
SCD may not only cause difficulties in peoples sex life in terms of pleasure and desire but can also affect reproduction and family planning. If both parents are carriers of the sickle cell gene (also known as sickle cell trait) there’s a 1 in 4 chance that their child would be born with sickle cell disease. However, people may not be aware as to whether they have sickle cell trait (SCT) until they undergo blood test before starting a family. This could result in couples having different opinions in how they start a family or even breaking up. Furthermore, if people with SCD are thinking of having biological children, they would need to consider the fact that their child would have a 50% chance of having SCD if their partner is a carrier. This could be challenging to navigate in relationships especially during the early stages as they would have to decide on the right time to ask their partners to get screened. Additionally, people may have to disclose they have SCD when they may not be ready which could cause anxiety around rejection when dating and in relationships.
Sickle Cell Disease is not only a physical health issue but also has an impact on peoples emotional, social and mental health as well. We should strive to reduce stigma by educating ourselves and encourage conversations around intimacy and screening in relationships.
Support for Sickle Cell Disease
You can get support for SCD by speaking with your healthcare provider or GP. There are also organisations and services dedicated to providing support around conditions like Sickle Cell Disease, such as ACLT.
ACLT (African Caribbean Leukaemia Trust) is an organisation committed to highlighting the critical lack of donors of Black heritage in the UK across the stem cell (bone marrow), blood, and organ donor registries.
Support at SASH
Here at SASH, we would like to help people affected by sickle cell, if sickle cell is having an impact on your sexual health and/or relationship, SASH can offer you support and advice. You can get in touch with us by contacting us, or make a referral to our service on our website www.sashlondon.org
We can also signpost you to services and organisations who might be able to provide support that better meets your needs.