How I Take Charge of My Own Care as Someone With Sickle Cell Disease
The most complicated and most important relationship I have is the one I have with myself. After all, I’m the constant in all of the relationships I have. My thoughts, feelings and actions dictate all of my relationships from beginning to end. How I view myself is the largest factor in all of my relationships. It not only dictates the type of people I attract and allow in my life, it is the driving force in how I treat them and how I allow myself to be treated and for how long.
Having sickle cell, I have no choice other than to be a leader. Especially when it comes to dealing with my doctors and nurses in and out of the hospital. At a very young age my mother began to teach me to trust my instincts and stand by my decisions. That meant that I not only had to believe in myself but, I had to without question or hesitation tell people what I needed and speak up when they did something wrong. At 2 years old my mother taught me to place my hand over possible I.V. site and say “No!” to the nurse attempting to start the I.V. That was my first lesson in not only guiding my nurses but also in knowing me. As you can imagine, having a 2 year old telling an adult that’s been put in charge of caring for them say “no” and prevent them from doing their job can be a little off-putting. Naturally the nurses thought I was just afraid of being stuck like most people when in actuality I wasn’t. However, I was aware that for whatever reason (be it I was having pain in that part of the body or I knew that the veins they were looking at didn’t work) I had to intervene in order to prevent a possible disaster and get the medication I needed.
That was also the first step in a long line of incidents in which I had to not only believe that what I wanted was indeed what was best for me at the time, but convince the doctors and nurses to follow my lead. In actuality I had to have the same confidence, determination and belief that what I wanted was best. Just like a doctor in there but without the schooling and white coat. Doctors are capable of caring for patients because they know that they have about five minutes to establish a relationship with their patient, in which the patient trusts the doctor enough to follow his/her lead. Doctors can give all of the orders they want but without the trust of the patient it’s of no use. In my situation I know I have to get the doctors to follow my lead without feeling like I’ve stepped on their toes. The way I do this is by being calm, respectful and educated about my disease and an expert on me. Just because I’m more than capable of caring for myself and teaching everyone in my life to do the same.
There are times when I just want to forget the 37 years of experiences and training that has made me who I am. I find myself wanting to fade into the background and allow everyone else to make decisions on my behalf. I get tired of having to educate people who have been to medical school about my disease. It’s very frustrating to not only have be the patient and my own advocate (and other people’s too), but the educator, doctor and nurse. On top of all the other hats I wear, I am a daughter, sister, godmother, cousin, niece, friend and sometimes therapist. When I get overwhelmed, I want to stop all of it so I can just walk the earth like Caine in the Kung Foo movies. Then, I remember that I was put on this earth for a reason (I’m still working out the details).
If you are feeling overwhelmed by all you have to manage, here are several pieces of advice:
1. Your life is not negotiable. My mother told me that she never makes a decision without first asking herself, “Is this good for Marissa?” If the answer was even close to “no” she didn’t do it. That was the moment when I realized one of her greatest fears was me never learning to do that for myself. Bottom line: if you don’t put you first, how can you expect others to?
2. Help them help you. At a very young age a nurse apologized to me for having to endure multiple tests and being stuck multiple times in an effort to put in my I.V. I was crying and working myself up until finally she stopped, looked me in the eye and said, “Marissa, unfortunately this is going to remain a huge part of your life either until they find a cure or you pass on. I know it hurts but, the more you cry and the louder you get…the harder our job becomes. Now you may continue to cry out or you can keep calm and help us help you. We will always react to you.” Her advice, combined with my great-grandmother’s orders not to cry in front of those people, has shaped my attitude and approach to my care team and overall health. I try to stay calm, composed, respectful and gracious at all times. There are days when I crack and on those days my care team springs into action because they know it’s out of character for me. Therefore, I must be in bad shape! They make me a priority until I’m calm and stable.
3. You are valuable and worthy of the best healthcare your physician’s education, experience and talents are capable of providing and all that the facility has to offer.
4. You are your greatest advocate and the best expert on yourself, your medical history and your overall health. Once you accept these facts it will become easier to not only participate more in your own healthcare decisions but eventually lead your team in partnership with your primary care physician. In doing so, remember that comprehensive care teams are no longer limited to you, your doctor and your nurses. Many consist not only of the aforementioned group but also a case manager, social worker, pain management teams and hospitalists. The most important thing to remember is that as a patient you may decide who you want to deal with and how much access they have to you and your case.
5. Take notes and keep records and cards of every person you come into contact with. Make it your business to know the supervisor’s supervisor so that when something goes wrong you have your evidence in order and can file your complaint to the proper authorities…the decision makers. Along with this make sure you know all of the laws, policies and procedures that dictate and drive the staff caring for you. You can’t report them if you don’t know what rules and regulations they must follow.
6. You are not alone. Many of us don’t have a lot of stability and support when it comes to our health. Add to that the lack of education and understanding of the disease and it’s very easy to feel alone, but you most definitely are not. It’s perfectly reasonable and normal to lean on others. We weren’t meant to go through life alone, especially while fighting a disease that’s so damn elusive and unpredictable.
7. Control what you have to. Accept help when it’s offered. Make your expectations known to your care team from the beginning. Close your ears sometimes to help you choose your battles wisely. Always be thankful and gracious for the life you have.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via TakakoWatanabe.
Marissa Cors is a 5th generation Sickle Cell Disease patient. She is a patient advocate for her family’s non-profit Axis Advocacy for Sickle Cell Disease and its patient outreach program, The Sickle Cell Experience LIVE!. Which is a weekly podcast on Facebook, that's live on Wednesdays at 5pm, pt. As an author and an advocate, she hopes to increase awareness surrounding the mistreatment, neglect, discrimination and stigma which plagues adults with SCD once they "age out" of pediatric care. It is her lifelong goal to change the "Culture of Cruelty," that seems to drive the treatment adult Sickle Cell patients receive especially, male carriers. To a "Culture of Care", in which medical professionals are actually taught about this devastating, hereditary illness rather than, "warned" about it in med/nursing school. Unfortunately, they are miseducated and encouraged to issue care based upon, a Patient's Disease Profile instead, of their needs. There is nothing more devastating to ones soul than, learning that you cannot receive the life saving care you desperately need because, you don't fit another's vision of pain. More so, when you realize that the horrible treatment you are receiving is not only abnormal but, expected and encouraged by the staff as a whole, to remain the status quo. Patients with Sickle Cell seemingly don't have the same rights as other patients regardless, of their ailment. Marissa hopes to one day live in a world, where Sickle Cell is taken just as seriously, and treated with the same respect, understanding and empathy as Cancer. She lives, works and plays in the Greater Los Angeles area.
marissa-cors