Interview with Nyetta Dienagha
– Nyeta Dienagha
If I could I would make it so that this disease never existed
Nyetta was born in Columbia Missouri and has three brothers, all of whom have the trait. She has visited Nigeria twice because her father is native Nigerian.
When did your family find out that you had Sickle Cell?
I was a year old when my mom found out that I had Sickle Cell Anemia. I was walking when I had my first crisis and my mom tells me that this particular day she kept trying to stand me on my feet and I would scream and sit back down. She said finally I was screaming when she wasn’t trying to stand me on my feet. My grandmother was a nurse and my mom was young at the time so when she saw that I wouldn’t stop crying she took me to my grandmother. My grandmother knew instantly what was wrong with me.
Did your grandmother know you had it because she was a nurse?
I had an aunt with sickle cell anaemia who was in a wheel chair by the time I was born. Together my mom and grandmother took me to the hospital where my grandmother suggested that they test me for SCD (Sickle Cell Disease). I was born in 1980 and there was no mandatory testing for sickle cell in Missouri at that time.
And because Sickle Cell is hereditary it made sense that you would be suffering from the same illness as your aunt.
My story is similar. My parents thought that my brother was a fussy baby until he spiked a fever at less than a year old. At the hospital he was diagnosed with Sickle Cell Anemia and I was as well.
How has your quality of life been since your diagnosis?
From the moment I was diagnosed my life has been cut into three sections; no pain, some pain, and extreme pain. I’ve learned that it is important to live my life to the fullest even during those times when I’m having some pain, because there are going to be those times when my pain will be crippling and I won’t be able to do anything other than cry and pray for the pain to ease even a little.
I seem to have a cycle; hospital, paying late bills catching up on things that happened while I was in the hospital, doing things to prepare and try to get ahead before the next time I have to be hospitalized. Somewhere in all of that I have to live life and try to make it as normal as can be with this disease.
It can be difficult to reclaim your schedule and sometimes your confidence after a rough crisis. There have been times when it took many days for me to get my head right after a hard crisis.
The physical pain of SCA is well known. However we don’t talk enough about the psychological unease of the disease. Can you share some of the emotional trauma you’ve experienced?
When I was younger I used to be afraid of the dark. I didn’t sleep much because my more serious pain crises always seemed to happen at night. I would be asleep, I’d start having dreams about somebody smashing my knees with a hammer, or falling and breaking one of my arms then I would wake up with most of my body being numb. Only it wasn’t the pain-free type of numb. It was a cutting-my-circulation-off, rubber-band-around-my-joint type of numb.
It doesn’t matter how old I get or what I go through, I don’t think I will ever be able to describe exactly how it feels to have a crisis. I’ve never felt anything like it and probably never will.
As we grow older we learn to better manage this disease and some of us can feel better more often. Has that been your experience?
Other than trying to stay away from things that I know for sure will cause a crisis my life is pretty much normal. I try to keep my life as close to normal as possible because I never know when I will be in pain again. Unfortunately, I take pain medications every day. Because of the damage caused by sickle cell if I didn’t take the meds, most days I wouldn’t even be able to climb out of bed without them. My back is sore most mornings.
I do have days when I am completely pain-free whereas other patients have pain constantly.
That reminds me of a Sickle Cell patient I met whose entire body trembled, he walked with a cane, he was malformed and he grunted with every breath. His reality was one of unrelenting pain.
Have you experienced the disease seeming to knock you backward from successes that you are trying to achieve?
I have had constant disappointments in my life. I was pre-med but because my health got a lot worse in college I had to withdraw from my classes. I did this with the thought that I would withdraw from the classes that semester, take a break from the next semester, then go back to school the next year but my health never got better. In fact, it got worse. Almost more than ten years later I am just now getting a better handle on my health.
It is also disappointing when I make plans to do something and I’m completely healthy up until the night before, when I usually have a bad crisis. I’m especially crushed when I make plans with my 6 year old niece. I’m not sure how much she understands. But there have been times where I’ve checked myself out of the hospital in extreme pain because I don’t want her to experience the disappointments I’ve been through because of my health.
I also have a little brother that is 15 years younger than me and the same thing happened with him. There were times when I just couldn’t do the things we had planned. It’s also hard to develop friendships because despite the fact that I’m an extremely patient person, not a lot of people want to make plans with someone they feel might end up having to cancel on them.
It’s either the pain or the fatigue. The need to be treated or the need to conserve energy. These make us appear anti social at best, flaky at the worst. Misconceptions abound.
What response have you met from the medical community?
Where do I begin about the hospitals? I’ve been kicked out of one hospital and have issues in the ER in the only other hospital available for me to go to in my city. They constantly label me as a drug seeker.
Once one doctor puts it in your notes, most other doctors don’t even try to get to know you. I’ve suffered through so much pain simply because doctors didn’t care to check my levels. I’ve been sent home when my count clearly indicated a serious crisis.
I take issue with that. I believe doctors and nurses should be accountable for statements that amount to slander. We have to have a process wherein we can be vindicated. I recommend we challenge this policy as individuals when it challenges us and collectively when it oppresses others who may not be willing to speak up for themselves.
Last summer I almost died because my port was infected and they kept sending me home despite me telling them over and over that something was not right. I’ve had to threaten repeatedly that I would take legal action. I usually never do because it’s all just so exhausting and by the time I get home I just want to pick up my life where it left off rather than to keep dealing with all the drama.
Once I was in the hospital with a knee that was more than twice the size of my normal knee and they kept coming in my room insisting that the blood work didn’t show that I was in crisis. They ignored my knee for a day and a half. I told them that if they sent me home I would make it a point not to go home but to go straight to a lawyer’s office. I was sick of dealing with their crap when I was in so much pain.
The next morning they came in, no doubt with their minds made up that they were going to send me home. They continued to tell me, ‘your blood work does not indicate pain.’ At this point I uncovered my knee and told them I don’t know about you but I would think that my knee being this swollen would be a perfect indication that I’m in pain.
When you don’t keep your mouth shut and go along with whatever they tell you to do, they treat you even worse. But there is no doubt in my mind that if I didn’t speak up the way I do I would either be dead or crippled. I’ve been labeled as a trouble-maker. I believe my strength is my voice and the fact that I am so hard-headed and refuse to just let things be. My mom instilled this in me. Because of her, along with other determined parents, the child and adolescent sickle cell program is awesome. And I feel like because of my constant complaining and refusal to lay down and die they have completely redone the adult program.
That’s awesome! We can change the system when we are not afraid of purposeful confrontation. Tell us about the changes you and the other with SCD have ushered in?
Now here in Columbia once the patients get to the floor they are treated with the care they deserve. Their pain is not questioned and they receive the pain meds they require. The doctors that treat the adults now know about sickle cell and are eager to learn more. They treat pain immediately and I am not so anxious about being admitted. I am not worried that I will be laying in my hospital bed in constant pain.
On the other hand the Emergency Room at the University of Missouri of Columbia still needs work.
They still have doctors there that stereotype and don’t try to get to know the patients individually. I’ve had one doctor tell me, ‘yeah we know that you are against transfusions because of your religion.’ I was extremely confused because I’ve had several transfusions throughout my life. My iron levels are high because of transfusions. He then continued on to tell me, ‘Oh I know you I’ve treated you before, the things you request are the things that drug seekers request. I remember you.’ Yet he couldn’t remember that I’ve had more transfusions than I can count. At one point in time I was getting a transfusion everytime I was admitted, he didn’t know that but insisted that he knew me.
Nyetta, if it was in your power, what would you do or say to single handedly change the plight of folks with SCD?
That’s a huge question. If I could I would make it so that this disease never existed. It’s a lot to go through. Honestly I don’t know what life is like any other way because it’s been a constant issue since I can remember.
I remember thinking in 3rd grade that when other kids got sick they went through the same issues that I went through. I used to wonder how they would come back to school so soon without being in pain. I would have to come back to school before I was fully recuperated most times because I would miss too many days. But if I had the power I would make people more understanding. People make this disease so much harder than it has to be. Whether it’s people just not caring and not wanting to be helpful at all or people that constantly feel sorry for us or not allow us to do what we can do.
Guys that I’ve been interested in have asked me can you do this, can you do that? I’ve been asked, ‘can you have sex?!’ I know they don’t know any better but it upsets me at times because I’m one of those patients that rode bikes, played both basketball and volleyball. When I’m healthy I’m normal. It’s the times that I’m not healthy that are devastating.