Home Health & Food Sickle cell and psychology (1)

Sickle cell and psychology (1)

by James Davies


Tola Dehinde

If you follow this column on sickle cell, from time to time, I like to have a doctor give us some gems about this debilitating disorder. I met Dr. J Anderson, who is a registered psychologist in my many sickle cell outpatients’ appointments, at the hospital I attend. I have always had an interest in mind and behaviour and decided to approach Anderson and I asked if he would write about his line of work with sickle cell patients. Let’s read and find out more about sickle cell and psychology:

I’m a clinical health psychologist and I have been working at a hospital in London for many years as part of the sickle cell team. People often wonder what psychology has to do with sickle cell—it’s a problem with the blood, not the mind—and isn’t it just ‘crazy people’ who need psychologists?

The idea that a person must have something mentally wrong with them to see a psychologist is a little old-fashioned. It might have been like that once, but the idea is now out-of-date. So, what then is a psychologist? A psychologist is someone who tries to understand what people do (their behaviour) and how the human brain works. People are complex, and so this means studying topics like biology, emotion, cognition (thinking), family and other relationships. A clinical psychologist is someone who uses this understanding to help improve the lives of others.

A clinical health psychologist is someone who specialises in helping people who may have a medical problem. Some kinds of medical problems do not need a psychologist. For example, if you cut your finger chopping vegetables, you have a medical problem. You might need to go to a hospital to get stitches and if you do that, you will probably heal in a couple of weeks. Everything is fine. This is a short-term problem—the problem does not last long, and you might never need to go to the hospital again. This is the type of problem that healthcare systems are usually good at dealing with.

But other health problems can last a long time, maybe one’s whole life. Something such as diabetes, asthma, or sickle cell is a kind of medical problem that mostly cannot be fixed like a cut finger, but instead, it is managed. This means you live with the problem forever, by constantly working to prevent symptoms and deal with complications as they arise.

Sickle cell is a life-long condition. People with sickle cell have three types of tasks they need to do to manage their illness. First, they need to deal with symptoms, usually, bouts of severe pain called a sickle ‘crisis,’ as well as the lasting effects of damage to the body that results from sickle crises. For instance, the spleen is a body organ that is like a sponge; it is full of tiny blood vessels that get clogged by sickle cells during a crisis. As a result, the spleen is damaged and shrinks.

Most adults with sickle cell do not have a spleen that works, and for this reason, they have a harder time fighting infections. People with sickle cell might need to take antibiotics to prevent infection. They might need to take other medications to prevent crises or deal with pain. Or they might need to take less of these medications that they have come to rely on. This involves changing behaviour, and for most people, making changes is hard. Psychologists can help people decide what is best for their health and like a good coach, we have strategies to help you make those changes successfully.

Next, people with sickle cell have to deal with the social and emotional consequences of having a long-term health problem. They may have missed some schooling as children. They may have a hard time finding a job or finding an employer who understands if the person needs to miss work due to being unwell or to attend hospital appointments. In the UK, the law says that employers must make ‘reasonable accommodations’ for people with a health condition, but only if the employer is aware of the health condition. Many people with sickle cell worry about this, i.e., if I tell them I have sickle cell, maybe I will not get the job, but if I don’t tell them and get the job, what if I have a crisis?

Another consequence is the effect on relationships. If you meet someone, how long do you wait before telling them you have sickle cell? Sickle cell results from a gene inherited from both parents. If you want your children to not have sickle cell, you might need to convince your partner to get tested to see if they are a carrier. But this can be a sensitive topic. What do you do if the test is positive? In some places, there is a great stigma attached to having the sickle cell gene. I have had patients in London tell me stories from their home countries of families hiring private investigators to get hold of a potential son or daughter-in-law’s medical file to ensure the sickle cell gene is not in their family. These decisions can be hard to talk about and it can be difficult to know what to do. Psychologists are used to talking about sensitive topics and can help you sort through a difficult decisions.

Setbacks in life take an emotional toll on everyone. It is normal to feel sad or worried when we fail when a relationship ends, or when we are rejected. Loss of motivation is difficult for anyone, but it can be extra hard for someone with a long-term illness. Psychologists can help by doing the things you need to do to feel better or changing ways of thinking that are making things more difficult.

Finally, people with sickle cell need to have a good enough relationship with doctors, nurses and others so that they can get the care they need. This is not always easy. Hospitals make mistakes all the time. If you only go to the hospital once or twice in your life, you probably will not notice or care. But if you go to the hospital regularly, you develop a sense of how things are supposed to be, and you will notice the mistakes. Even more, they will become increasingly frustrating.

The concluding part of Anderson’s piece on sickle cell and psychology will be next week.

If you would like to get in touch with me about this article or about sickle cell, do so, via email: [email protected] And do checkout my blog: https://www.dailylivingwithsicklecell.com/ My book on sickle cell – How To Live With Sickle Cell and my other books are available for purchase on www.amazon.com

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