A snippet of how SCD has affected me

Jasmine Bailey
Age 21

Sometimes the physical pain is the easiest part to deal with; but, that by no stretch of the imagination means that it is easy. There are just so many other aspects of life besides the physical that are affected by having sickle cell disease. I recall the disease specifically taking a toll on my mental/emotional state all of my life; but, especially during college. Imagine all of your friends, classmates and roommates going to class during the day, pulling all-nighters, partying in clubs until exhaustion, and doing it all over again with no problem. I wanted to be “normal” so badly but I always had to choose between activities because doing more than one would send me into a pain crisis. Due to this I always felt left out and inadequate compared to my peers which ultimately wreaked havoc on my social life.


The part that hurt me the most was the fact that sickle cell affected my academic life. I’ve always loved school and learning so making good grades was never a problem. However, when I started to receive C’s and sometimes even failing grades because of missing classes or something other than intellectual ability, I felt cheated. It seems as though I have to work ten times as hard just to make average grades when it comes so easy to my peers; not to mention the fact that one crisis/hospital visit can undo weeks of studying and drop an A to a D in an uncontrollable instant.


I’m embarrassed to say but sometimes I allowed this disease to affect my spiritual life. During crisis when I’d be writhing in pain, suffering, struggling to breathe, and weak beyond reason; I’d ask “Why God, why me?”. I at times just couldn’t understand how a greater being would allow this suffering to occur; but, with growth and maturity I’ve taken that negative in thinking this was my curse and turned it to a positive and as a blessing. Due to my struggles with this disease I’ve learned to persevere, to be resilient and write my emotions out through the art form of poetry that has served as encouragements to others as well as myself.


Like I said earlier, sometimes the physical pain is the easiest part to deal with. I say that because its expected, its inevitable so we know it is coming and we know what it feels like. I am familiar with my bones feeling like jagged shards of glass are trying to flow through my veins. I am acquainted with the feeling of tightness present when my lungs are filling with fluid or on the verge of collapsing. I know what its like to be stuck with needles 30 plus times to find an IV site amongst scarred veins. I’m use to gasping for air and have nothing happen but a mere struggle, or to feel so fatigued that speaking becomes a feat. I’ve had my legs and ankles swell rendering me immobile for 7 months while I used a wheelchair, walker and cane. Not to mention experiencing the torment of side effects of being on 14 different medications—side effects ranging from nausea to constipation, diarrhea to hair loss, weight gain to confusion, dry mouth to swelling.


While all of those things seem almost intolerable, they wan in comparison to the stigmas that we as sicklers face. I have lost friends who just couldn’t handle the overwhelming nature of this disease. Family members have treaded the land of frustration because they want me to get better—it makes me feel like a burden though I know they just want the best. I’ve had judgmental eyes follow me through hallways while I wheel myself as strangers recall I was just walking the other day. I’ve lived the embarrassment of walking with a walker in public and have people stare in curiosity and are cordial because they feel sorry for me. Then there is the biggest brunt to bear—the myth of sicklers being drug seeking. As if it weren’t enough to deal with the pain and fighting our own body, we have to fight nurses, PCA’s, and doctors/hematologists who may think we’re exaggerating our pain or even lying about it altogether. No doubt there exist drug seekers in the sickle cell community but I’m sure that’s the case with every disease. However, it seems to be the standard generalization or label when medical personnel encounter people with sickle cell. This is an unfair judgment and we should be treated as individuals instead of by unwarranted conclusions drawn up by a person who hasn’t walked a step in our shoes.


Overall we hope for empathy not sympathy, for people to be educated, for people to get tested to minimize the people born with the disease. In addition and most importantly we’d like equal attention for our disease that is often undermined, underpublicized (if at all), and overlooked. Ultimately with the collaborative effort of all of those elements we can lower the mortality rate, increase the QOL (quality of life), get research that’ll lead to a cure—or in the case a cure is not found we can offer a range of support for each sector of life; thus giving sicklers the equal opportunity to be functional and contributing members of society like everyone else.