One of the things I despise is unwanted advice and commentary. There are times when things are best left unsaid. This is especially true when dealing with SCD. I do know that sickle cell is a debilitating, chronic illness. In addition to unspeakable pain, one is at an increased risk of having a stroke, organ damage, or losing their eyesight, just to name a few things. It is even more devastating to know that these complications can affect all ages.
What amazes me is the number of people who feel that it is open season to provide negative outlooks on Riley’s condition. At Riley’s 1 year well baby check up, the nurse did the usual task of taking her weight and measurements. She asked the usual questions as well, “Any medications?” “Penicillin” “How long?” “She has to take it twice daily for sickle cell.” Of course, the conversation could have stopped there. Unfortunately, it did not.
The nurse looked sympathetic , but her next words lacked the needed empathy that would put one at ease. “Oh, how sad. I have a friend with SC. Both he and his sister have it. They are always sick or in a lot of pain. He just got out of the hospital. They have it pretty bad.” DH and I looked at each other concurrently thinking, “Who’s going to tell her to be quiet.” I guess we both realized, if you can’t say anything nice……and remained silent, while fuming.
She finished her commentary on “all the surgeries and pain” while writing down information and bounced out of the room, merely saying, “The doctor will be in shortly” going on with her day. Once the door closed, dh looked at me and said, “Don’t you hate that!” I sarcastically replied my delayed reaction of, “Gee, thanks for the encouragement.”
Now, the reason that I despise hearing these things is not because I am in denial, far from it actually. I understand the barriers that Riley may face. My heart grieves at times just thinking about it. I cannot tell you the number of times, I think, she is in pain, the possibility of her having a stroke, needing emergency surgery, or far worse.
What angers me most about these comments is there is little thought given to what the commentator can do to encourage or help. They can breeze in to put rain in you cloud with nary a silver lining in sight. It is a glass half-empty mentality that is all too often given to families and patients affected by Sickle Cell Disease, as if looking on the dark side is the best that can be done.
Rarely will these comments be followed by something the commentator has done to personally help an individual or their family, or to raised awareness about this devastating diagnosis. It is simply a comment in the wind.
Why not get involved in the fight to break the sickle cycle? There are so many things that can be done to help. Some things are things that you may do already, such as being a regular blood donor. Many sickle cell patients, young and older alike, have a need for regular blood transfusions.
Currently, blood transfusions are most effective and proven treatment for some severe complications of sickle cell disease. Blood transfusions reduce the risk of some complications of sickle cell disease and improve symptoms of severe anemia. A blood transfusion lowers the amount of hemoglobin S red blood cells in the body. When there are fewer sickled hemoglobin S cells in the bloodstream, they are less likely to build up and block blood vessels. Blood transfusion also increases the number of normal red blood cells in the body, increasing the supply of oxygen to the body.
In addition to treating acute chest syndrome and leg ulcers, blood transfusions may help prevent strokes in infants, children, and teens who previously had a stroke or are at high risk for a first stroke.
The next time you hear that someone has sickle cell, I encourage you to uplift in word or deed with the small satisfaction of knowing that a kind word goes a long way.
