How to provide practical support to a partner with sickle cell

Keeping with the theme of February, the month of love, I wanted to offer some practical tips for how to support a partner with sickle cell disease.

The reality of living with a chronic illness is that things may not always go well, as the condition can be unpredictable. Maintaining a romantic relationship with a sickle cell patient means your love must withstand the not-so-great times.

So what should you do upon learning that your partner has sickle cell disease? I presume fear or fear-adjacent emotions may arise. Please know that this is completely normal. What you do next is what matters and will likely make or break the foundation of your relationship.

Sickle cell disease is not a death sentence. Notwithstanding the extremely flawed negative stigmas that are often peddled, know that long life, lasting love, marriage, and a family are all possible for sickle cell patients. You may need to undergo genotype testing and adjust your family planning accordingly, but I believe everyone should be doing this anyway.

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Now, let’s say your partner has experienced a sickle cell crisis or some other complication and has been hospitalized. What can you do to help?

First and foremost, be present and available. Love is more than mere words. Your presence can provide immense comfort, even if your partner isn’t well enough to hold a conversation.

You can also offer them physical comfort by helping them feel more at home in the hospital. For example, you could bring them their own pajamas to wear instead of a hospital gown, or get them their favorite snacks.

Be sure to reassure your partner that they’re not alone and that you’re with them every step of the way. Offer words of comfort and hope, but also respect their space if they need time to process their feelings. Remind your partner of their life outside the hospital and of your joint plans for the future. This can help them feel more connected and combat the sadness that comes with a hospitalization.

Other ways to provide support

Cultivate an environment that permits your partner to be honest and open about their struggles. You may be surprised by how frequently we as patients feel alone and unheard. Feeling like a burden to our loved ones and overwhelmed by our condition is also commonplace in our community. Let your partner express their fears, frustrations, and needs. Don’t feel compelled to offer solutions. You won’t be able to fix everything, and sometimes just listening is the best way to show support.

Communicate with your partner’s medical team to help ensure their needs are being met. Ask questions as needed to clarify instructions or changes in treatment. One of the most tiring aspects of being a sickle cell patient is having to self-advocate 24/7, especially in healthcare settings where we are often ignored or dismissed. Advocating for your partner can help ease this burden, allowing them to focus their energy on getting better.

It can be surprising how often loved ones become upset or angry with patients for not sharing that they’ve been hospitalized. People underestimate how much pain and difficultly people with sickle cell may be experiencing; we don’t always have the capacity to reach out to loved ones. When I required frequent hospital admissions, I felt like a burden or like I was begging for attention by sharing that I was in the hospital, so I just stopped telling people. Here, partners can intervene as a liaison between family and friends, coordinating visitors and keeping loved ones informed. This gives the patient time to rest and preserves their dignity when battling painful and potentially embarrassing episodes.

Once your partner is stable, help them plan for their recovery. This may include setting up a comfortable space at home, researching resources for post-hospital care, or managing logistics.

Seeing someone you care for go through deeply traumatic experiences isn’t easy. Be gentle and kind to yourself and look after your own health and well-being. Make sure to rest, eat, and take time for yourself. If your partner is going through a difficult spell, you may want to explore carer support groups and therapy, as these can be deeply traumatic experiences.

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.