Sickle Cell Disease sufferers obviously go through a lot of physical pain that most people will probably never fully understand or appreciate because for many of them, the pain they experience has been likened to being beaten repeatedly with a sledge hammer or as if every single organ in their body is being ripped apart from within.It is a most excruciating pain that I have witnessed first hand and do not wish on my worst enemy let alone someone I love dearly. The psychological impact is just as severe and requires just as much treatment and attention as it affects other parts of their lives that others perhaps take for granted:
1. Friendships & Relationships: For many, because of the nature of the disease, they become either very introverted or highly extroverted. My brother was a mixture of both; growing up he didn't have many friends and kept to himself a lot of the time. I remember my mom would always go to a new school to inform the teachers and school authorities about his condition and would be extremely pissed and ready to tell anyone off if ever he was flogged or punished by a teacher because in many cases, this led to a crisis. My brother would just retreat into his own world and not relate much with people but as he got older, he became more of an extrovert having many friends and being very social but I would notice that whenever he would be hospitalized from a painful episode, he reverts back to being an introvert and not want to speak to or see anyone.
2. Depression: There is a lot of mental and emotional struggle sickle cell sufferers battle through especially when they are still young and wondering why they have to go through so much pain and suffering. Without the needed support from family, friends and partners this can result in dangerous patterns of thinking like having thoughts of suicide and emotionally disconnecting from life and situations.
There is a general lack of this studies however on the disease's impact on the family even though the variables are vast; ranging from financial burden, coping with the feelings of the affected child/sibling, disruption of family activities in the individual or group sense due to hospitalizations and the coping ability of the caregiver within the family. In my case, my mom has always been the primary caretaker for my siblings and made sure that my older sister and I were not just sensitive to their condition but also able to care for them in her absence. Financially, the burden has been and still is heavy and never ending due to treatment and medication that is required on a regular frequent basis. It is not uncommon either for anyone of us to change or cancel plans in order to care for them when they have had to be hospitalized or undergone major treatment of any sort. For my sister, we all collectively encourage her to be social and enjoy time with her friends instead of wanting to stay indoors all day feeling self conscious but of course knowing not to do anything too stressful.
Suffice it to say that the entire family is affected by SCD and all we can really do is love and support each other since we all are dealing with this. Siblings need to be sensitive towards one another and understand that no one chooses to be born with sickle cell or any type of disease in fact and they certainly do not enjoy the pain and discomfort suffered. Be the listening ear, the shoulder to lean on and the support system they need because at the end of the day, their pain is real and it is hard. They do not want to be a burden probably more than you don't enjoy the momentary inconveniences you have to endure for their sakes. Love them through their struggles because it truly means more than you realize.
Thank you for stopping by and chat to you guys on Thursday with a new post.