Between A Tight Wall and The Dark Blue Sea.

In the past few weeks, the sickle cell community has experienced so much pain and loss. Many advocates I connected with in my cause of advocacy especially in the USA, have died just in the first few weeks of 2023.  Painful as all these may be, there's one particular case that had shivers run down my spine.

I have read so many warrior advocates post about this case online and some have sent links to me to add my voice to the many voices calling for justice.

It is a sad case which gives wings to a fear that a lot of us warriors live with.

Imagine having to as a last resort, leave your house in excruciating pain with hopes to get the much needed relief from the hospital and this turns out to be your worse nightmare come true? Only that you are not there anymore to witness what happened.

The story creating all this anger and I would say well justified anger too is that of a Warrior named Brittany in the USA. According to what I have read, she just lost her mum and her grief sent her into crisis - this happens a lot because grief is a powerful emotional trigger for us. Unfortunately, despite going to the hospital and repeatedly saying she is into crisis and needs help, she was forcefully removed from the hospital by security which further aggravated her situation and sadly, she died.

That is what began the cry and the call to sue the hospital and every medical personnel that was involved.

And the sad thing is, a lot of warriors die this way from suboptimal care  when we are not being treated as drug addicts or as overbearing patients challenging the Drs, we face a lot of discrimination and stigma.

Sickle cell continue to have this general apathy and lack of attention largely due to it being a predominantly black and brown disease especially in most western countries.

Every time I shiver when I read such stories. Yes, there are difficult  patients but difficult patients are not limited to one disease and I think it is a dis service to brand ALL patients you come across in such a community as difficult and harden drug addicts.

It is possible that many Drs do not like the idea of a patient who is knowledgeable about their condition. They see it as  threat and a challenge to their skills and abilities. But that isn't the case. Many empower themselves through knowledge and experience and it helps them to self advocate or point out when a particular treatment plan isn't working. I believe collaboration and respect would lead to good and optimal care if many understand this.

When I read the last article on this case sent to me, I felt sad and I had to reflect a lot on the care I get back here. Then I made this comment in reply to my friend who sent me the link " we may not have all the sophisticated hospital and all back here but the love and care I receive when I am sick from my doctors more than make up for this lack and I couldn't trade that for anything".

Yes, we do not always have very equipped hospitals and sometimes, not all of us can have access to specialized care but one thing is the empathetic concern and care majority of the Doctors provide here more than make up for that and we cannot over emphasis how much empathy and care aid the healing process.

It is hard, to hear a Dr here turned away a patient in the throngs of pain not to talk of them calling security to forcefully remove them out of the hospital. Some doctors even go as far as using their own money from the little they make to cover the bills of some patients that could not afford just so they have a chance at life. This doesn't mean we do not have indifferent doctors too but thankfully, I have not come across them and I pray I never do.

Stories like these and the desire to work hard to ensure persons living with sickle cell can get access to quality care and management drives my advocacy and it is also one of the fuels for my dream to build a hospital some day were warriors can get the care and management they deserve.

Between complications that may arise from living with sickle cell and suboptimal care, persons with sickle cell continue to live life as if they are between a tight wall and a deep blue sea, quietly and painfully dealing with their invisible illness and this shouldn't be the case. We really need to put our hands together to change this narrative otherwise, we will continue to experience many preventable deaths as a community.