Sickle Cell Warriors

Articles

 Breaking News
  • Sickle Cell Disease Handbook by APHON Sickle Cell Disease Handbook for Patients & Families The Association of Pediatric Hematology/Oncology Nurses has developed a resource for sickle disease patients and their families. The Sickle Cell Disease Handbook provides an...
  • Sickle Cell Drug Therapeutics Conference LiveStream Sept. 14, 2017 Sickle Cell Warriors has exclusively partnered with Global Blood Therapeutics (GBT) to livestream the Annual Sickle Cell Disease Therapeutics Conference from New York City on September 14 at https://www.facebook.com/SickleCellWarriors/. This is...
  • Tips to Prevent Sickle Cell Crisis in the Summer Related posts:Placing the BlameShould a Sickle Cell Trait Carrier Marry Someone with Sickle Cell Disease?World Sickle Cell Day Activities!!!...
  • Love Overcomes Sickle Cell: Meet Linda & Steve I’m not a warrior but I’m a warrior wife, so I’ve been on the other side of your story. I hope that this gives you hope and courage to face...
  • Life Insurance with Sickle Cell It's been very hard to obtain life insurance with sickle cell disease. Here are a few tips that may get your application approved. ...

Another Crises, Another Day for Abuse

Editors note: Here is a letter that I just got from one of our fellow warriors who was recently admitted in the UK for a sickle cell crises. We all go through almost the same issues with regards to our treatment in the hospital, and yet very few people talk about it outside of their close family and friends. Osei is bravely sharing his story in the hopes that at least one med professional will see it, and change their practice.

You know, I always say, you don’t need to like me in order to treat me. Simple. You can give me my pain meds on time all the time and I will soon be out of your hair. I won’t make it difficult for you to treat me, I will be humble and considerate to your needs.

But I have run up on some dumb sh*t nurses in my time. One asking ‘are you in pain’ as I am writhing and tense, with tears rolling down my face, comes to mind.  The time they asked this I was simply asking for Ibuprofen and Paracetemol-type meds, not even Morphine.

I’ve just recently come out of hospital (was in from Thursday 10th – 14th June). Not the best experience but not the worse. I was in a different hospital than my usual. A&E (ER) wasn’t too bad, but the ward after this – WOW – what a horrible experience. I was not given any priority. There were 6 other patients in my section, and to me I’m in the most pain. I’m writhing around on the bed, turning, half crying, and a black nurse doesn’t give me any priority. Alright it’s just her in her section, but simply taking the 5 minutes to see to me and help put me out of some of the pain, and return to her other ‘not so urgent patients’ would have been all she needed to do. Being in a crisis and at the mercy of the staff is not easy. You are in a high level of pain and cannot retaliate. You cannot state your case. You cannot stand up for yourself. Being at the mercy of staff you don’t want to upset them in any way, which then has you in their ‘bad books’, and any treatment given is harsh, hurried or done negatively, like they don’t want to do it.

The nurse in question didn’t respect Sickle Cell (even though she was a black nurse!), and was making stupid jokes. She was bullying and inappropriate. I was at this ward temporarily. Fortunately I got transferred and the other ward was much better. I was still in a lot of pain on the Thursday, but medicines were frequent and without question.

This situation isn’t uncommon. I once stated in my Minority Nurse interview that black nurses often treated sickle cell patients ‘worse’ than non-black nurse. The interviewer was very surprised, especially since sickle cell is considered a “Black” disease. There is still a long way that we have to go in raising awareness both in the public and even in the medical community.

One good tip is that you try to educate at least 1 nurse or doctor every hospital stay. If you are just changing the practice of that one person, by explaining what the disease is, and how debilitating the pain can be, then the next time they come across someone with sickle cell, they will treat them better. Let us not continue to be silent victims.

Related posts:

Tags
Share

About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles

4 Comments

  1. NewLife
    NewLife July 04, 05:55

    I make a pledge to be more sensitive to this issue in my practice. I agree that you shouldn’t suffer in silence. God bless.

  2. Nutty
    Nutty July 05, 09:42

    Awww… I feel bad for you. So so sorry.

  3. Diva33
    Diva33 July 05, 18:46

    Thank you for sharing this. I have had similar and worse experiences within the last 3 years. I was recently admitted to a “Sickle Cell Center of Excellence” and during my initial 7 day stay, I was given fluids and pain meds, but no blood transfusion. It was only when I started asking why I was still there that they began the process to release me. I later realized that the doctor’s were using me to help educate the medical students that accompanied them to my bedside every day. I believe it is because I have Sickle C and have had a history of unusual complications from it.(I just started a new job, so all of this time was unpaid leave.)

    The day after I was released, I started having trouble breathing. I went to the center’s sister hospital because they have a sickle cell clinic and my hemotologist told me I would get “better care” there. While there, I was diagnosed with pneumonia and acute chest syndrome caused by laying in a hospital bed on pain meds for a week. (ALWAYS ask for the incentive breather!)During my second stay (another 5 days), I had a very nice nurse, but she was at the mercy of the doctors and the pharmacy. It took them 5 and a half hours to bring my pain meds. By the time it came, I was in tears and could barely breathe! I was also given an antibiotic that made me break out into hives and they Continued to give it to me!! Despite the fact that my eyes and lips were swollen and I had hives over my entire body. They just gave me Benedryl and watched me suffer. I had to ask for a different antibiotic when I was released because I was afraid if I continued to use it, eventually, the hives would close my throat!

    As soon as I got home, I decided that I was going to do everything in my power to stay crisis free! (This same hospital overdosed me on dilaudid the previous summer.) I began to search the web and I found this website. The information on diet has been a God send! 3 weeks after incorporating thiocynide foods into my diet, cutting out fried foods and drinking a lot of water, I feel better than I have in 3 year! I am determined to take control of my health and my body.

    Thank you for sharing your story. It has given me the courage to share mine.

  4. Bridgett
    Bridgett July 08, 15:57

    ***PLEASE FORGIVE ME FOR GOING OFF TOPIC***
    OMG… I don’t even know where to begin…
    Let me tell you that I had my very 1st crisis when I was 3 yrz old, and I had them on a regular basis. I was not Diagnosed until 14 yrz later. That whole time the pediatrician told us that I had “Growing Pains”, that my bones were growing so fast that they were causing my muscles to tear and bleed. My mom stopped taking me to him when I was 13 b/c he was only sending me home with Children’s Tylenol. I never had hand-foot syndrome and my eyes weren’t noticeably jaundice. No one else in our family, on either side had ever been known to have SCD. I was diagnosed after they found over 140+ gallstones. I used to catch a bad break on what seemed like every time I had to be admitted. I’m from this little itty bitty place in Florida and it’s so country. Everybody went to the same pediatrician just like everybody knew one another. I was born in 1976 and there wasn’t mandatory testing of babies of color for SCD and other diseases mandated until after 1986. Once I found out that I had this, I vowed to find out as much as possible about my condition. I know my body , I know the things that trigger a crisis and the Dr’s have the audacity to get an attitude when I correct them or know more about ME than they do??? I don’t get it, I would think that they would be happie or relieved that they have a patient who is on point with their situation. But their Ego’s don’t allow common sense to kick in. I tell them “Look, you may be a Dr. that has studied your field of expertise for however many years BUT I was born with this and You do not know ME better than I know ME.” That sets em straight every time. I REFUSE to allow the staff to treat me the way that they treated the last sickler that was there. I let them know that we don’t even make up 1% of the population of the U.S. so they can’t possibly be too much of an expert. (this is only Dr.s that I do not have a relationship with, that come at me the wrong way) Don’t get me wrong but I am very respectful to the staff and after many years of adversity, I now know the proper “Hospital Etiquette”
    and lingo to get their attention and to get the results that I need to get me through my hospital stays
    I swear, that I get so tired of having to educate Dr.s, nurses and staff, it’s just ridiculous.
    While I was pregnant and supposedly under the care of a “High Risk” OB-GYN, I had an appt., his partner came into the room , the 1st time that we had met and he was a tall good-looking brother. So, I let out a sigh of relief as I told him that I felt more comfortable with him b/c I had SCD-SS and with him being a black Dr., …WHY did I even go there, this man asked me why would him being black make any difference in how I felt??? I could’nt believe it, I simply said to him that “Well, since I do have Sickle Cell , more black Dr.’s tend to be well informed of the disease. He looked as though I was speaking an alien language…I should have known then, that I was with the wrong practice when the Dr. told me that I would not be allowed to bank my baby’s cord blood after the delivery. He said that the Cord Blood Bank wouldn’t accept the blood b/c I have the disease!!! He was very wrong about that and If I hadn’t used my better judgment to my own research on it, I don’t what we would have done. Thank God that with the exception of having 1 mild crisis, I had a ‘textbook’ pregnancy!!! We banked our babygyrlz cord blood and they collected enough for 3 separate procedures.

Write a Comment

Donate

Support awareness & education for SCD

Announcements

Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here: http://sicklecellwarriors.com/classes/
* = required field
Interested in local meetups?




powered by MailChimp!

Join us on Facebook!

Archives

Tweets!

have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss