Invisible Disease: My Life With Sickle Cell Anemia

sca“How do you get it?”  is the question I get the most after telling someone that I have Sickle Cell Anemia.  I can’t help but think that they want an answer immediately to ensure that they’re standing at a safe distance and haven’t contracted the disease.  But that’s NOT how you get it.  It doesn’t come from touch, or exposure.  One must be born with the illness.  My mother has the disease and my father has the trait, meaning I had a 75% or more chance of having Sickle Cell.  

Sickle Cell Anemia is a blood disorder characterized by crescent moon shaped blood cells.  Normal blood cells are round and smooth because they are full of oxygen. Sickled blood cells lack oxygen, which makes them oddly shaped and rigid.  When one produces too many of the sickled cells, a severe pain episode may occur. There is no specific place on the body one will hurt all the time and there is no way to control or estimate how severe the pain will be or how long it will last.  In the medical field, they call these episodes “Crisis”, personally, I refer to it as an “attack” because I feel like my body is attacking itself.  The word crisis does not accurately describe the violence I feel when I’m in so much pain.  Painful episodes usually occur when my body needs to produce more blood quickly (i.e. overexertion, changing temperatures quickly, being cold) or when I am severely anemic.

Decades ago, there was a Malaria outbreak in West Africa.  Since Malaria lives off of the oxygen in blood, West Africans began to develop an immunity to Malaria by producing mutated cells with less oxygen (sickled cells).  In one aspect, this was awesome, but  in turn, it also developed an awful disease called Sickle Cell Anemia.

I’m not in pain every day like some people with Sickle Cell Anemia but when my body decides to attack, it is excruciatingly painful.  My attacks usually start in my lower back and radiate to my hips.  I start to feel a throbbing pain that gets worse by the second. I lie down and try to get comfortable.  I try to distract myself.  I try to sleep.  When I am able to fall asleep, the pain is usually gone by the time I wake up.

Other episodes go a little differently.  Some attacks are so bad that no amount of prescription pain medication will work.  These are the really painful episodes that I know can only end with a hospitalization.  Sometimes I am in pain for days before going to the hospital.  I sweat, I struggle, I stress, I toss and turn and take pill after pill and say prayer after prayer and nothing takes the pain away. I finally surrender to the pain and go to the Emergency Room.

The Emergency Room is an experience in and of itself.  Since I present with no visible wounds, the severity of my pain has been misinterpreted and often underestimated by medical staff.  I have been made to wait from thirty minutes to eight hours.  Why would I be wiling to wait eight hours in an Emergency Room with no food or water?  I wait because I’m in pain.  So much pain that I have no energy to fight them on the decision.  So much pain that leaving feels impossible and I fear that starting the process over at a different facility may take longer.

Once I am called, I enter the Jungle of Needles where I am poked and prodded until a vein large enough to support an IV is found.  After thirty-two years in and out of the hospital, my veins have become weak and hard to penetrate.  An IV is rarely started on the first try, if ever.  During one Emergency Room visit, I was poked sixteen times before a good enough vein was tapped into.  At my last visit, my only available site was in my right jugular.  I don’t flinch when the thick needles pierce my skin because I know that it means that I am one step closer to getting the demon out of my body.  I will admit, it still hurts, but my Sickle Cell pain hurts worse than any needle could.

When all of my vitals have been taken and an IV has been started, strong pain medication is administered.  When the dosing is correct, I feel the pain dissolve in my body almost immediately.  If the dose is too low, my body still aches.  I ask for more but some doctors are afraid to give me more because the dosage seems too high for someone with my height and weight.  However, my drug tolerance is very high because I’ve been given IV pain medication throughout my entire life.  It is only normal for one to develop a tolerance and require more than the average person.  Some medical professionals understand and others have little to no experience with chronic pain or Sickle Cell and decide that I have been given enough medication and I just need to “suck it up”.

When my blood levels are extremely low, I require a blood transfusion.  I have had countless blood transfusions throughout my life and without them I’d be dead.  To receive blood, I must be admitted to the hospital.  A process I know far too well.  I’m wheeled up to a room where I am taken completely out of my life and nothing outside matters anymore.  I am put on around-the-clock pain medication while I wait for my blood to be released from the lab.  The nurses hang one bag at a time, usually, two or three bags total.  The transfusions don’t hurt.  Sometimes they make me itch or make me feel nauseous, but no pain which is a relief.  After a blood transfusion, I usually feel much better.  My blood is no longer struggling to flow, I’m filled with oxygenated blood that makes me feel energized; As if my batteries have been recharged.

Meanwhile, the world outside still turns.  Rent is still due, bills still need to be paid, work still needs to be done and relationships still need to be nurtured.  Living a “normal” life has proven impossible.  The severity and unpredictability of my sickness puts turmoil into every part of my life.  How do you I pay my rent when I’ve been in the hospital for two weeks?  How do I maintain a relationship when I can’t be the girlfriend I expect myself to be?  Of course there are many answers to these questions and some might even say that these things aren’t important; But they are.

I don’t want pity, I want understanding and sensitivity.  I want to spread awareness and educate people about this debilitating disease.  Just because I don’t look sick doesn’t mean that I’m not sick.  And just because am sick, doesn’t mean that I should quarantine myself.  I feel like a lot of people with chronic illnesses are afraid to speak out because they don’t want stigmas applied to them.  But the only way we can get rid of stigmas is by showing others the reality of our situations, not bullet points.

Asia’s voice can be heard via twitter, facebook & instagram: AsiaSickLee 

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2 thoughts on “Invisible Disease: My Life With Sickle Cell Anemia

  1. Osis

    Love your story tears drop as I read laying In the hospital room it’s crazy how are lives are nd the things we gotta deal nobody know I only tell certain people Idk I think I need to come out the light but its stressful trying tell people idk this my first time commenting on this like I feel like you jus told my story from 10 years from now I’m only 21 nd have I guess 50% cause my mom nd dad both had the trait much as I love my African American woman I’m scared to have any relationshil scared for my kids alot nd I hate that cause I dont like being picky but I jus had to say sum cause ima Male and I drop tears to your story

    Reply

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