Irrespective of the life threatening complications that sickle cell patients face, it is still possible to go on and live a full, active life. One only needs to be alert to symptoms so the necessary steps can be taken in the event of a crisis episode.
Sickle Cell is a disease that worsens over time and the available treatment options vary for patients depending on symptoms and severity. It is therefore important to discuss how to prepare for life with sickle cell as an adult emotionally and psychologically.
Dealing with pain management, infection management and other complications, the daily lives of patients can be affected and this can certainly take its toll emotionally. Outside of support groups and charities available to help cope with the diagnosis of sickle cell, adult patients can equally take steps to prepare for life with the disease on their own. Because pain is the hallmark symptom of SCD, severe pain can even occur unpredictably making coping difficult and socially disruptive. Pain can also cause negative thought patterns about the future leading to psychological factors like depression and anxiety. To prepare for this, employing methods involving positive thinking, relaxation, healthy distractions like aquatic rehabilitation and getting massages will help navigate these negative emotions.
Some studies have shown greater or more significant levels of psychiatric morbidity in adults with sickle cell compared with other chronic illness groups. They can become saddened or angry, considering their quality of life to be poorer in all areas. This can trigger behavioral problems and/or stress hence, working closely with doctors and discussing these feelings could necessitate medication to help combat and prepare for this.
Related: How To Prepare For A Child With Sickle Cell
Feelings of helplessness are also known to plague adult patients and this is due in large part to being stereotyped as drug addicts. This can often transition to feeling lonely, isolated with disruptions in relationships, work and social activities. Preparing for this means having social support from friends and loved ones is crucial to adherence to treatment and to health promotion behaviors.
A lot of the time, adult sickle cell patients prefer to manage their pain at home and doing this gives them a strong sense of self responsibility. This is due to often negative contact experienced with health care providers who sometimes are insensitive to their pain, lack knowledge about the disease and lack of psychosocial support. Having positive contact with providers who are prompt and efficient will mean higher levels of trust towards the medical profession.
Unfortunately because race still plays a part in receiving timely and effective treatment in the United States, African-American patients are sometimes forced to seek other forms of treatment to help manage their condition. This obviously needs to change to give every sickle cell patient a chance at a better quality of life and positively dealing with their condition.
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