Have you ever informed somebody of your diagnosis and found their response to be a little annoying? I often have. I try to extend grace in such situations because usually people don’t know what to say and, as such, speak without considering the ramifications. With that in mind, here are some things to avoid saying to sickle cell patients.
Sickle cell patients are at risk of acute and chronic fatigue. There are a few reasons for this, namely pain crises reducing one’s ability to get adequate sleep. Also, our mutated red blood cells cannot carry sufficient amounts of oxygen around the body, known as hypoxemia. This can cause fatigue.
Therefore, it is unsurprising that sickle cell patients can become extremely tired and fatigued quickly. Please do not misjudge this as laziness. It can be quite frustrating when this happens.
Instead of quickly concluding the patient is lazy, perhaps inquire if there is anything that can be done to alleviate stress and enable the patient to rest.
There is very little treatment for fatigue in sickle cell, so it’s one of the symptoms we just have to learn to deal with. Be patient with someone experiencing fatigue.
‘I knew someone with sickle cell. They died.’
This comment gets on my last nerve. Sickle cell patients are constantly reminded of the shortened life expectancy the condition brings. These reminders come by way of literature as well as our daily experiences. For example, each time I am admitted into the hospital and moved into intensive care is a stark reminder of the fragility of my life. The current pandemic is another example. Being at high risk of long-term complications and/or death from contracting the virus is yet another reminder to sickle cell patients of the severity of the condition.
On top of these concerns running through our minds, no sickle cell patient wants to hear that you knew someone who died from the condition. Nobody finds that information helpful.
Perhaps try to reword and say you have heard of sickle cell before or have had some experiences with the condition.
‘It’s not that bad.’
Erm … are you sure?!
Sickle cell affects each individual uniquely. You may know somebody with mild sickle cell; however, this does not mean that all other sickle cell patients have the same experience.
I can use myself as an example. I went 10 years without any crises at one stage in my life. However, last year I was unwell more than I was well and spent about 200 days in the hospital. Sickle cell is a sporadic disease. Do not assume that because one person’s experience is mild, others are exaggerating their experiences.
We must learn to acknowledge that for some people, sickle cell may not be “that bad,” and for others, it can impact every area of their lives. We should treat each patient as an individual and not take a “one-size-fits-all” approach due to the very nature of this condition.
We should all seek to be as understanding as possible of the emotions and experiences of individual patients. Let’s use our words to be as helpful and sensitive as possible.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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