September is Sickle Cell awareness month and I’m telling my story to raise awareness about living with sickle cell. I’m especially passionate about letting people know that you can live, and I mean live a rich, full life even when living with sickle cell.
It’s 2017 and I’m in shock at how people with sickle cell are treated in some cases. With all the advances and awareness raising campaigns, we still have so many myths and misinformation floating around. I volunteer at a sickle cell free clinic once a month and I’ve heard some shocking stories.
I really shouldn’t be surprised, I’ve had my fair share of discrimination as a sickle cell warrior (warrior is the new term, it’s not politically correct to say sickler these days. but I digress).
Well, sickle cell is classed a disability in some climes and I do understand why, but here’s my story.
I don’t feel any more disabled or able than any other person. There are challenges living with a chronic condition, but with the right care it’s not impossible.
Let me first explain what this chronic condition is. Not the science of it but the feeling of it. Sudden onset of indescribable pain. When I was a child, it seemed to me that it just came for no reason. I could be sitting down watching TV and all of a sudden I’d start to feel like my blood had turned into shards of glass and was scrapping my veins as it flowed through. This pain usually originated in my chest or lower back.
Doctors have this thing they do… they ask you to rate your pain on a scale of 1 to 10. I never really understood that, as the pain always seemed at 1000 to me. How can I possibly give it a rating between 1 and 10?
I recently came across the description in the infographic and it’s now clearer to me how they see it. I recommend that they give this information to patients so we understand their rating scale better.
As described by this infographic, crisis pain is usually 9 – 10. Pain so bad you are completely incoherent. You would do just about anything to make it go away.
When I was a kid, I used to own up to all my naughtiness when a crisis came. I’d tell my mum if I had a biscuit behind her back or drank the juice she asked me not to. I was a pain in the ass to my sister; I’d own up to anything we had agreed to keep secret. Luckily our naughtiness didn’t go past eating sweets when told not to.
Now I’m older and wiser (I hope) and have learnt how to manage my condition better. I can spot my triggers and I’m more in tune with my body. I know when a crisis is forming much earlier than I could recognise it as a child. I’m now able to pace myself and rest when I need to. I know that I must stay hydrated, get plenty of rest and stay warm, but not too hot.
These things do pose challenges. For example, I drink so much water that I need the loo more than the average person. Which means being aware of your surroundings, where you’re going to be and balancing the need for hydration with the ability to take bathroom breaks at your location.
Travel is a challenge. I’ve been blessed with some incredible jobs that involved a lot of travel. So, again I have my own pre-travel and arrival routines to help me cope.
Years ago, getting on a plane always brought on a crisis. I’ve been on many flights where they had to get the oxygen tank out for me and even got so bad on one flight, they asked for a doctor on the plane and broke out the injection… I really don’t know if the airline had it or the doctor had it with him.
My point is, yes there are challenges, but people without sickle cell have challenges as well.
Sickle cell is treatable and it’s not contagious. There is no reason for children with sickle cell to be stigmatised in this day and age. Every person with sickle cell has exactly the same chance at life as every one else.
This month of September, reach out to someone living with sickle cell and encourage them.