Here’s How You Can Be a Better Partner for a Sickle Cell Patient

Here’s How You Can Be a Better Partner for a Sickle Cell Patient
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In my last column, I shared tips about dating with sickle cell disease. Continuing in the spirit of the Valentine’s Day season, I wanted to discuss in this column tips for those of you who wish to date someone with sickle cell. I have found that this topic isn’t frequently addressed, though it should be.

Deciding to date a sickle cell patient long term could result in the partner becoming the patient’s full-time carer. It is important that partners are also supported and able to access help and guidance when necessary. Personally, I’d like to see more assistance offered to partners of sickle cell patients.

Educate yourself

My first tip for partners would be to be proactive. It is important that partners put the work in and seek to educate themselves about sickle cell disease. A plethora of resources are available to help form a better understanding of sickle cell. I would encourage partners to utilize the internet, social media platforms, and local and national organizations.

For example, here in the U.K., we have sickle cell charities such as the Sickle Cell Society and Sicklekan. If you are here, then you are off to a great start.

Sickle Cell Disease News, which publishes this column, publishes and promotes many valuable resources ranging from discussions of the science of sickle cell to updates on treatments, along with patient columns like this one.

Build communication skills

It is important to remember that the same condition can affect people differently over time. Given this, although it is vital to understand the science of the condition, I also would especially stress the importance of having good communication. Sickle cell will affect the person in your life in ways that can’t be explained by a Google search. Try to cultivate an environment of transparency in your relationship, so that the patient in your life feels free to be open about how sickle cell is affecting them and their capabilities at any given moment.

Become a responsible advocate

Where the sickle cell patient is open to it, I would encourage partners to get involved in their care. This can be done by trying to understand their medication regime and treatment plans, and by attending medical appointments to support them.

It may also be useful to have discussions so that you are familiar with the patient’s treatment preferences. This will enable you to advocate for them when they’re incapacitated.

Much of our hospital treatment for crises relies upon strong opioids that can knock a patient out. As such, they may not always be in the right frame of mind to advocate for themselves effectively when they are ill. I always find it helpful to have somebody who can take this on for me when I can’t.

Encourage flexibility

Fatigue can be a big problem for sickle cell patients. Partners should try to build flexibility into plans, as plans may need changing at the last minute. Please do not make the sickle cell patient feel guilty if they need to cancel or postpone plans. Perhaps try to propose alternative plans at home so that they can get adequate rest.

I should point out that this is not an exhaustive list, as there are many ways you can support the sickle cell patient in your life. These ideas are a good starting point, but please speak to the patient in your life to understand their wants and needs.

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
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Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
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