Mental and Emotional Health With Sickle Cell: Finding Support
We all know that sickle cell affects various parts of the body, but one thing I feel we need is more discussion on how it affects mental health. Sometimes we focus solely on the physical damage of this disease but the truth is the mental and emotional damage can be just as severe.
If you are someone with sickle cell disease or a caregiver for someone with sickle cell disease, it is important to have a dialogue with your hematologist. This open dialogue shouldn’t just consist of talking about your physical health, but your mental health too. If you feel as though you are struggling with your mental health, your hematologist should be able to refer you to some mental health professionals.
Growing up I don’t think I could categorize it as depression or anything to do with mental health but I knew there was a huge insecurity. This insecurity was from dealing with the challenges of sickle cell disease at such a young age. Not really knowing why I was different and what caused me to be sick made me very insecure. I knew I had sickle cell disease but didn't fully know what that meant and I didn’t know my triggers. All it felt was like I was fine one minute and then sick the next.
God bless my mother she did all she could to make sure that I was taken care of when I was young. She made sure I refrained from stressful sports and activities, made sure I was consistent with my meds, and she made sure I bundled up every time I stepped out the house. She did her best, and although it kept me healthy physically, I felt I wasn’t normal like other kids.
Fast forward to high school and college I think the mental toll that sickle cell disease had taken on me pushed me into denial. I knew I had a disease but I was determined to still live my life as “normal” as possible.
I was in denial that certain things needed to be in place for me to live a happy and healthy life. That denial caused me frequent visits to the hospital. I was doing all the things that a typical college student would do, with no regard for my health. Some of those things included excessive drinking, little to no sleep, and poor diet to name a few. To complicate things I was not frequent with my doctor's visits and was often skipping my meds.
When I graduated college there was a mental shift from denial to stress and depression.
When I got my first professional job I started to feel stressed out about how I was going to be able to maintain that job and take care of my physical health. One thing about sickle cell when it mixes with stress the outcome is almost always unpleasant. All the stress that I was under for my job and just balancing my health caused me to be very sick.
Not only was I sick, but I was depressed too. I had days when I didn’t eat or get out of bed because the depression was so bad. After each visit to the hospital I would be depressed for an additional week, and unable to return to work.
If it wasn’t for my open and honest dialogue with my hematologist at the time, I don’t know what the outcome of my depression would have been. I’m so grateful that I have a hematologist that I’m able to have conversations surrounding sickle cell and mental health openly without any shame, guilt, or judgment.
My hematologist was able to point me in the right direction and got me the necessary help that I needed. There are still times that I feel depressed or I question why I was given this disease, but for every negative thought that I get I replace it with a positive one.
Being open and honest about my feelings that’s how I keep my mental health in check consistently.
Have you had a special caregiver in your life?