Managing expectations beyond chronic illness....Now what?
Kids with chronic illness can achieve a state of wellness and health. I witness this miracle in my office daily! Once we’ve quelled the majority of the original symptoms and shift our focus to maintenance therapy I find many times these to be the most challenging to manage, not acutely ill, perhaps mild but manageable symptoms that no longer overpower daily life. There seems to be a gnawing psychological component preventing these kids from moving forward and finally having the opportunity to live life to the fullest.
Most often parents are the conductor, arranging medical appointments, procedures and testing as well as maintaining medication schedules . Parents constantly view their children under a microscope looking for clues! Parents are often the ones tirelessly researching online looking for the "silver bullet" that heals. It's a way of life, families fall into a rhythm of survival and many times for the child it's the only way of life that they've ever known.
Parents are the strongest advocate for their child especially when the illness is deemed controversial much like chronic Lyme Disease or PANS/Autoimmune Encephalopathy. You've never experienced tenacity until you've met a parent dealing with a child diagnosed with a chronic condition!
It's a bittersweet moment when you help that child achieve a state of health and wellness within a chronic condition. The question then becomes "Now what?" Remember, this for some is the only way of life they have known. I often see a wave of fear overshadow the victory of wellness. Many suffer from PTSD (post-traumatic stress disorder) as a result of an acute onset illness that morphed into something more chronic and debilitating in nature. Once in that state of mind, it's difficult to recover.
Kids and parents or other care givers are in a state of passage, unsure of their next move. It's a confusing time that can trigger further anxieties and undue stress. The changeover from acute management of illness symptoms to managing wellness and living by a new set of rules. Many children with long-term illnesses do not have the opportunity to organically achieve independence and other developmental milestones and struggle to find their state of normalcy.
How do I live without chronic illness at the forefront. How as a parent do I let go and loosen the reigns? I've always been different from others, how do I blend? Common questions asked by those in a transitional state. It is scary! I compare it to the first day of middle-school. Remember that? Still in a transitional stage of independence with a new set of rules, unsure of yourself. It evokes anxiety and fear.
I don't have magical, earth shattering advice to give in this instance but I can start by saying that what you are feeling and experiencing is NORMAL! The way to deal with these fears of transition as I'll call them is to "start from the beginning, It's a very good place to start"....Mary Poppins was a genius!
Begin by being honest. Be honest about your illness. Be honest about short-term and long-term effects. Be honest about how you are feeling and dealing with those symptoms. Be honest about what is within your control and what isn't then take steps to change those things you can.
Accept the co-existence rule. Yes, chronic illness with the right combination of treatment regimens and lifestyle choices can achieve a wellness state and live life successfully.
Seek out counseling if you haven't already. Parents should be an integral part of the counseling. They may also be suffering from PTSD and transitional anxieties. We can't forget about parents!
Understand that it will all be ok. This is just a phase of your life and will not rule your world!