As parents, raising a child is a challenge and one with a chronic illness is a whole new story, the child is in constant pain and agony, day and night – this start to become a norm even though it’s impossible to get used to it. But the people that take the most hit are the parents even though they’re not the ones in the actual pain. To be more specific mothers are mostly the ones having it the worse, they’re the ones that stays with the child during and after the crises and in most cases with the help of the fathers. But today I want to talk about the transition from parent-care to self-care.
The majority of adolescents with chronic conditions like sickle cell disease are used to crying out to their parents during an episode. This is mostly due to the fact that we’re used to it, our parents are the backbone and emergency contact when it comes to our illness and care from day one. The moment we start to transit to adulthood they start to pull out their support as slow as possible and they start to advise us on how we can handle our condition at the time of crisis or episode.
While a lot of adolescents are trying to be independent and free from their parents when they start to become adults, people with chronic conditions like me are trying to convince our parents to stay with them – by the way, there are some people with chronic illnesses that still want to be independent of their parents. I’m not among them. Being independent is a good thing and something everyone should have, but when it comes to taking care of myself at the time of sickle cell crises, I’ll like to be as close to my parents as possible. Living independently is one thing, taking care of myself at the time of crises is another thing, – I wouldn’t mind given up on independent living if it means my parents taking care of me when I’m sick – feel free to judge me.
Okay back to the transition thing, transition have various meanings but here it means moving from parent-care to self-care. As I mentioned, having independency is a good thing, we can do what we want, when we want, anytime we want, without a third party interference. As stated in previous post, it’s hard to think when your whole body is acting like it’s been run over by a semi-trailer truck. Focusing during this time is hard, and the idea of taking drugs never cross my mind when I’m in crises but everything else does. With all these challenges, self-care is possible but it’s not something that happens immediately, it takes a lot of time and the moment you learn to take care of yourself without any assistance life become more easier and simple.
Self-care is also a good thing, even while living with parents. Sickle cell crises has no time or place to occur, it can happen at any given time particularly when we’re free and enjoying the little time we have out of the hospital. This also applied to the rest of chronic illnesses like thalassemia. My sickle cell disease thinks it’s more appropriate to start acting up at night or early morning when I’m about to start sleeping or carry out my plan of the day. The trick to handling it, is to stop it before its reinforcement arrived (before the rest of the body parts start to pain), I normally stop or maintain it by taking painkillers among others.
If you’re planning on living independently but afraid of taking care of yourself at the time of illness, I’ll like to advise you to give independency a try, but live close to home just in case. At first, you’ll think is a bad idea but the moment you start to observe and learn about your illness and start to manage it, everything start to become easier and simpler. Again, it takes time but at the end it’s worth given it a try, beside by not taking a leap, time will come when you will need to move out.
By the way, I’m still under my parents care but now that I’m thousands of miles away from them, I’m learning to take care of myself, and my parents are always worried whenever I told them I’m sick, being it a flu or fever. If you want to learn to take care of yourself and your illness, start living few blocks away from your parents or carers and take it from there.
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