One Who Fears To Open Up To The Doctor Cannot Get Healed

In my language we have a proverb atya okubirira omusawo tawona loosely translated as the one who fears to open up to the doctor cannot get healed. This proverb means if you hide anything from the doctor, you will not get full treatment and probably your healing will be half baked.

It’s more common to get to the doctor’s room and refuse to tell him symptoms which you think are minor. At times the minor symptoms may be the cause of major problem.

The first step in securing the correct treatment plan for your pain and discomfort is to tell your doctor about all your symptoms and any changes in those symptoms as the treatment progresses. Even if you feel that they are not related to your condition, your doctor needs to know about them. You should also be completely honest about your lifestyle. For example if there is any other drugs you use apart from the one prescribed, tell your doctor.

This information will be held in the stricter confidence and will only guide your doctor towards the most appropriate plan of care.

Tell your doctor

• When the symptoms started
• What they feel like
• How they are affecting your  life and
• What makes the symptoms better or worse

The more specific your explanation, the more helpful it is.
 

Love Life!

Ssebandeke Ashiraf

SICKLE CELL: TO TELL OR NOT TO TELL YOUR PARTNER

Tina a friend of mine for a year now who is also a sickle cell warrior, has been grappling with a problem. She has been silently struggling with it for quite a long period of time.

I once asked her whether she is in a relationship and her answer was a NO. I went ahead to inquire whether she had dated before and Tina told me she has never dated before.

Tina told me that she wants to have her first date at 23. She is 22 years old now. I asked Tina whether it’s her wish to be single at her age against the norms. Many girls start dating as early as 12 years.

I dag deeper for more information because I believed telling me that she wanted to start dating at 22 was just a lame excuse. I found out that the reason she has for not dating is fear to disclose her sickle cell status to the partner.

This is the dilemma most warriors find themselves in on whether to tell or not to tell their partners. Many worry that they will lose their relationships when they tell their partners that they are sickle cell warriors. It is normal to feel nervous, embarrassed or even fearful of your partner’s reaction which may be verbal or even physical.

Disclosure is a process and has no written formula of when and how to tell. Some people prefer disclosing before the relationship, others want to disclose on the first date. Some want to do it after a certain period in a relationship. There are also those who will not disclose at all and prefer to have it “killing” them from inside.

My friend always wants to put it straight into the face of a man who wants to initiate a romantic relationship. She will tell from the start that she is a lady of ‘problems’ and whether you are ready to walk with her through the dark times.

It’s possible that your partner or spouse may change as time goes by. If you want to disclose you have to be aware that it may create new problems for you. There is still stigma attached to the whole subject of sickle cell disease and those who have it. Unsympathetic and prejudicial reactions are still common in some people.

There are important points you need to consider before disclosing;

• You need to ask yourself if the partner needs to know now or if it’s better to wait.
• Be prepared to talk about sickle cell in a clear way and provide basic information about what it means to have sickle cell disease.
• It may be helpful to have some information (printed material or websites) available to help with any questions your partner may have.

Do you have any experience you can share with us, where you had to disclose something private to a close friend, a lover or a spouse? How did it go and what was there response? Is there anything we need to keep in mind before approaching a sensitive subject.

Looking forward to hear your experiences.


Love Life!

Ssebandeke Ashiraf

SICKLE CELL MYTHS ABET STIGMA

In 2011 in my first semester of my final year at the university, I was seated in the lecture room holding a magazine with a photo of Mrs Ruth Nankanja Mukibi the founder and Executive Director of Sickle Cell Association of Uganda. By then she was 36 years old, my course mates asked me about the lady and I told them she was a sickler. Their uniform answer was that it she can’t be and I was just speaking ill about the lady. Their reasoning was that a person with sickle cell cannot live to celebrate their 9th birthday and if they live longer by God’s grace at least they do not make 12 years. I told them am also a sickler and am not dead. They were shocked. It was a difficult situation for me to confess because I did not know how I would be treated or what amount of stigmatization I was going receive.

I confessed being a sickler because I wanted to counter the myths and stereotype that comes with sickle cell disease, the people living with the disease and those who care for them. What I was waiting for was the harsh treatment I was going to receive from those people whom I had told that I have sickle cell. To my surprise their treatment was good. One of them who was just a colleague and a classmate from that time became my good friend and she always check on me to find out how am faring. Another classmate called a year after university and inquired about how to take care of her cousin who is also a sickler. What I had feared that my confession was going to haunt me has just turned out to be a blessing. I realized that these people were confined to the thinking that sicklers die early because they did not have anyone to counter and trash that myth.

Knowledge is power that is a universally accepted statement. A person who has been equipped with knowledge is better positioned to guide and also do the right thing. Myths, stereotypes, stigma and ignorance have all been erased by people who are well equipped with the right and useful knowledge

When I audit the last five years of my sickle cell advocacy, 8 out of 10 questions asked at every awareness session are about myths. It’s not surprising that sickle cell has remained one of the diseases that are poorly understood by the public. When it comes to our African society witchcraft and its association to the disease makes life of sicklers a menace.

I want to put the facts clear to counter the myths. Sickle cell awareness campaigns shall be smooth if the myths are countered and erased from the public domains.

Myth

Sickle cell is infectious and contagious.

Fact

This is one of the popular myths and has also greatly contributed to the stigma faced by people living with sickle cell disease Sickle cell is not contagious disease. It’s an inherited disease that passed from parents to the child. Just like skin colour which can not be changed when you sit, eat, play or sleep with someone with another colour also sickle cell can not be gotten by associating with someone with sickle cell disease.

Myth

Sickle cell patients die at 5, 9, 12, 16, 21, 25, 30

Fact

People living with sickle cell disease can live a normal life when taken care of well. Although their life expectancy may not be the same as other people but they can live longer. I remember Mzeei Bulasio Wamala a Ugandan who has been recorded as longest living sicklers who died in 2008 at the age of 78 years. It’s not true that people with sickle cell disease have an age ceiling which they can not live beyond. Most people are told that they will not live to celebrate their 5th birthdays, when they reach 5 they are told 9 after 9 its pushed to 12, 14, 16 19, 21, 30. Its only God who knows when a person will die even doctors don’t know. We should not believe the prophets of doom.

Myth

Sickle cell patients don’t bear children

Fact

This is a common “verse” for lack of better word being told to people with sickle cell. It’s common to find people with sickle cell confined in corners and have made to believe that they will never live to see the happiness of having their own babies. A person with sickle cell has the ability to conceive and bear children. There are a number of sicklers who have more than two children.

Every sickle cell awareness campaign should put a lot of effort on providing information that counters myths and sickle cell stereotypes.

Love Life!

Ssebandeke Ashiraf

TO ADHERE TO TREATMENT SICKLE CELL PATIENTS NEED TO BE EDUCATED

In her debut memoir Living with sickle cell disease: The struggle to survive, Judy Gray Johnson 72, one of the longest living person with Sickle Cell Disease recollects that she was 16 years in 1959 when she had gone with her aunt to a doctor who diagnosed her with Sickle Cell Disease. She writes that the social mores of that time dictated that adults discussed nothing of substance with children. She was never told anything concerning Sickle Cell Disease.

It may seem that was for the 1950s or for the last century and never crossed into the 21st Century (2000s) or the information age. That has not been the case, in 2002 when I was first diagnosed with sickle cell 43 years after Judy was diagnosed it was the same story for me..

"That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition"

I was 12 years then, when the doctor handed the results to my father nothing was taught to me about the disease I was going to live with for the rest of my life. It was only the cocktail of drugs prescribed after the diagnosis that was explained to me.

Were these people reading the same script? It’s the question I still ask myself.

That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition. Some patients finds themselves in dilemma when they don’t know the symptoms, warning signs when a crisis is going to happen and what to do to arrest a crisis.

Patients with Sickle Cell need to be better educated about their health. Most are less likely to get accurate information about their disease. One mother to a Sickle Cell warrior daughter shared her experience with a nurse; she revealed that a nurse who even treats other Sickle Cell warriors told her that Sickle Cell is infectious and any person can get it even later in life. If a medical personnel can give unforgivable information like this, I don’t this this nurse can give correct information about treatment and how to avoid a crisis.

"The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease,"

Still some of the patients lack a better understanding of many symptoms of Sickle Cell and there is a need for improved patient education. Improving patients understanding about why a particular treatment is important for an individual situation may lead to more informed decisions and better adherence to treatment.

A better comprehension of one’s symptoms and reasons for personalized treatment recommendations also could improve a patient’s trust, confidence and satisfaction with primary treatment provider.

The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease, so all the efforts and resources were channeled to caring for children with Sickle Cell. The situation has now changed and sicklers progress to adulthood.

So now there is a need to have a special education programme for adolescent and adult patients. The programme needs to cover issues like the reasons for taking daily drugs, different pain coping methods and reasons for delayed growth. This can also reduce on the stress experienced by most teens.

A comprehensive patient education program can focus on connecting adult patients with sickle cell disease with primary care providers and support the relationship. Help older adolescents and young adults with Sickle Cell Disease to transition smoothly from pediatric to adult primary care doctors and finally primary care providers to care for people with sickle cell disease of all ages and provide necessary tools to deliver high quality care.

Love Life!

Ssebandeke Ashiraf

Catch up with me HERE where you can read more of my written pieces on Sickle Cell Disease. 

I WAS ASHAMED, ANGRY AND DEPRESSED ABOUT HAVING SICKLE CELL

In life we encounter numerous challenges or obstacles as many people call them. Some obstacles are difficult to remove from your way and move on while others are difficult to remove and even tell the world that you have the obstacle.  But living life when you know nothing will change. Living with sickle cell disease is one of the biggest obstacles which comes early in life and continue until you go the world beyond. The most difficult scenario is when you cannot tell even your best friend that you are at war with sickle cell every day.

The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

It’s difficult for someone living with sickle cell to admit and declare it publicly due to stigma and discrimination, just like in the case of HIV/Aids. The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

I know what it’s like to feel like you are alone in the struggle to be well, maintain, manage and cope with having sickle cell.  I understand the constant battle to live a “normal” productive and uninterrupted life. Likewise, I also know it can be different to keep a positive attitude - to focus on what is good and right in your life instead of the pain and what you may feel is wrong in your life. It’s not easy to be of sound mind and good spirit when you are in pain. Sometimes it’s hard not to focus on what you are feeling at the moment.

There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Even on a good day, no matter how well you may happen to be, it can be hard to be hopeful or thankful that, at least for the moment, sickle cell is not in control. There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Only someone who has sickle cell can ever really know what it’s like to live with it. Sickle cell can cause havoc on the psyche; it’s so much more than the physical - it’s the emotional and mental as well. It was revealed to me in a recent conversation that even though sickle cell affects us differently, we are so much more alike than not. We have the same stories and we share so many similar experiences. None of us are ever really alone in our thoughts and feelings. I am so grateful for social networks like Facebook, Instagram, Whatsapp, and Twitter.

I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life.

Back then, during my loneliest moments, I was ashamed, angry and depressed about having sickle cell. I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life. I hated acknowledging sickle cell in any way, much less talking about it. I have come a long way from being the self-pitying, insecure, angry individual I used to be.

Today I stand strong and unashamed. I can talk about sickle cell openly and honestly. I thank God that today, I know that I am not defined by sickle cell and I am not alone. I share my journey and experiences to let my fellow “soldiers”/”warriors” know that they are not alone either. I need my fellow soldiers to know that there isn't a thought, concern or feeling that can’t be identified with somebody else’s.

Love Life!

Ssebandeke Ashiraf

Catch up with me HERE where you can read more of my written pieces on Sickle Cell Disease.