Love, Marriage and Sickle Cell Anemia
About 250 million people worldwide are born with the gene responsible for the sickle cell anemia disease. 300,000 babies are born yearly with a fatal strain of this disease. A lot of people are still ignorant about what it means to live with sickle cell anemia. Even a lot of people who are aware of the physical implications are not aware of the psychological effects on the sufferer.
Today is World Sickle Cell Awareness Day and we are supposed to be celebrating our loved ones living with sickle cell anemia. I feel quite nervous writing this article firstly because, this is not a celebration but an education and secondly because although I have people who are carriers of this gene in my circle of family and friends, I am not a sufferer myself.
A part of me is telling me to keep quiet about it because it might be offensive to sufferers (seeing as I am not one) but I choose to speak. I believe speaking about it is more helpful thay just saying “I celebrate you, I know your struggle”. Some of you reading this might meet a sickle cell sufferer in the future and you need this knowledge.
Some of you are currently living with or in a relationship with someone who has sickle cell anemia. It is important to know how exactly they feel at times, this knowledge will most certainly influence our actions and decisions towards them positively. Most times, people who are suffering find it difficult to explain their pains and feelings.
This problem is due to a number of reasons. I will be attempting to describe the effects of the physical pain on the psychology and mental health of people living with sickle cell anemia. Disclaimer: I am no psychologist. I am just someone who is deeply attuned to the human condition. Walk with me 👇
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The Over Compensation
The urge to over compensate stems from a feeling of inadequacy. Sickle cell sufferers are usually suffering from one infection or another or going through a crisis. They could spend months in the hospital or days in bed, constantly needing the care of their family members.
These disadvantages affect them psychologically and make them want to overcompensate in other areas of their lives. They might strain to become a people’s person, a strong person or a genius person to their own detriment just to make up for what they think is missing.
In their relationships, they might allow themselves become subject to physical or emotional abuse just because they believe they deserve it. They might also give too much of themselves. All these are tied to an irrational belief that they owe the world something.
If you are in this situation, I am here to tell you that you don’t, it is the duty of your loved ones to take care of you. They should know that, and if they don’t, they are the problem. Never let anyone make you feel guilty about your condition. Never feel less. You are brave, you are strong and a lot of people love you.
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The Guilt
It is really hard to be unable to take care of one’s self, especially to the point of not being able to perform simple and basic tasks like going to the toilet and brushing your teeth. It brings a certain kind of shame and guilt. You see yourself as a burden to your partner and your family. This guilt and shame can sink so deep that you might begin to lash out at people.
Ever yelled that you can do it on your own even when you couldn’t lift a finger? Ever wept as you peed in bed because you couldn’t stand up? Ever doubled over as the excruciating pain hit? In that moment when people attempted to touch you and comfort you, you felt like lashing out at them. As a man living with suckle cell anemia, you might agonize daily about your inability to be a stereotypical macho man. A woman might agonize about being unable to take care of her husband and run her home properly.
Knowing that your partner couldn’t go out because you were having a crisis again, seeing them build their lives around your sickness can be worse than any pain you’ve ever felt. If you have ever had a partner who was a sickle cell sufferer then you know those fake smiles you can see right through.
You remember them telling you “I am fine” even though you could see the pain in their eyes. You can also remember how grateful you felt for finally having some time to yourself. The guilt set in later but you pushed it aside. You told yourself you deserve a life and yes you do. Everyone deserves a life and you do not have to feel guilty about wanting to live yours.
Although your decision to take time off might hurt your patner, he/she would be grateful to you. Knowing that their loved one is happy and satisfied is the best drug for a sick person.
Note: If your partner continually makes you feel guilty about your illness then you have to let go of them. Such people can wreck destruction to your mental health. If you’re currently battling feelings of guilt that developed when you were little and under your parents care then please see a therapist. It will help.
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Being Selfish
Suffering has a way of distracting us from others and isolating us in a very personal bubble. As a person living with sickle cell anemia, do not ignore the fact that although you need your partner more, your partner also needs you. He/she needs all the love they can get from you. Being closed off and withdrawn would only make them feel alienated and unappreciated.
I know how difficult it is to see beyond your pain but you have to do it for love. Love and care is always sweeter when reciprocated so do the little you can to make your partner happy without over exerting yourself.
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The Depression
Illness can really make you feel you are alone in the world. An illness that ravages your body like SCD is even worse because you experience moments when you are literally locked in the pain. Having people who have your best interest at heart can make so much difference. Talking to people who love you and won’t feel like you’re exaggerating your pain is very helpful.
I know in Africa, it is hard to get people like that. Even our parents are not reliable most of the time. Still, I hope we are all lucky to have that group of persons who love us and are willing to listen to us. Suffering from the disease could make your self confidence kind of low. I know self validation is good but it would be nice to have people telling you just how beautiful you are once in a while.
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The Sexual Performance Problem
Our society today is highly sexualized, people brag at how many rounds of sex they can manage. Living with sickle cell means over exertion is a no no. That means you most certainly won’t be doing any bragging. What am I saying? You might even have conflict with your partner over level of sexual satisfaction. This conflict could be real or imagined. Imagine being a man and not being able to give your partner “great sex”.
Being a woman and not being able to respond to your partner’s needs. You will feel guilty and inadequate. The problem with this issue is how quickly it can escalate and lead to the end of your relationship. I recommend being with someone who understands you and would be able to manage during those times when you are incapacitated or going through a crisis.
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The Birth Complication Problem
For an African woman, the greatest achievement is to have her own babies. Preferably healthy babies. A pregnant woman with sickle cell anemia is at high risk of having various pregnancy and birth complications such as low birth weight of the baby and maternal mortality.
Pregnancy is risky for a healthy woman but it could be a death sentence to a woman with SCD. That is why doctors advise to start having children early and to have fewer children. For a woman who would have loved many children, the knowledge of these limitations can be crippling.
After birth, a woman living with SCD will would also have problems caring for her newborn. This is because she would be closely monitored and asked to do minimal work. This is where she needs the total support of her family and her partner to ensure she comes out of it alive.
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The Uncertainty
If you ask me, I would say this is the saddest part of living with SCD. It is really scary not knowing what will happen next. You could be hanging out with your friends and the next moment be strapped to a hospital bed. The threat of death continously hangs over your life and it makes you scared to live.
You fear getting married and leaving your spouse in this world as a widow or a widower. You fear having children and leaving them as orphans. You fear making friends and starting relationships because you do not know how much and for how long that person would be able to cope with your situation.
This is the cross people living with SCD have to face daily and it makes everything harder for them than it is for healthy folks. This is why they need that concrete support, persons who will remain a constant in their lives. This is why they need all the love we can offer.
Here are a few things you can do to make life easier for persons close to you who are suffering from sickle cell anemia.
- Show genuine concern
- Support them with anything you can
- Make them feel special but normal.
- Give them a listening ear when they need someone to talk to.
- Make everyday special for them.
& the world will thank you for it. I will thank you for it. To all my brothers and sisters out there who are fighting this disease, you are beautiful and strong and we at Afrolady love you. Do not give up, do not stop fighting. We are all standing behind you, watching you survive. Happy World Sickle Cell Awareness Day!
Thank you for reading. Please like, share and comment. If you are a SCD fighter or you know someone who has fought the disease then you must have some insight. Please share it with us, someone who needs it is reading. Enjoy your day.
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