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Learning to Let Go of Control in My Life With Chronic Illness

Dear person who loves control,

One of the hardest things to learn to live with when diagnosed with a chronic illness is the unavoidable need to rely on others. Friends, family, doctors, insurance companies…you are inevitably often at the whim of others.

In many ways, it can be positive. You learn to trust, to accept and to communicate (that last one has yet to happen in my case). When it comes to doctors and insurance companies, you learn how to be assertive, even when you’re in pain. You learn to trust your instincts despite being told you don’t know what you’re talking about. You learn to search for what you need and keep trying to find a way, even though it seems impossible to find.

This is all stuff you’ve heard. It’s everything the support material reminds you, your friends say to empower you, therapists tell you, your doctor says while smiling and patting you on the back on the way out of the office. The negative is a positive! Yeah! It’s true, in some way, but there’s a lot they don’t tell you, probably because they don’t know or can’t understand.

Feeling powerless in a situation is something every human being goes through at one time or another. Some more often than others. When it becomes the unavoidable background music to your life, however, it’s a whole different story. It’s not to say that we don’t fight, don’t take control in as many ways we can – because we do. It is that no matter what, control has been lost, and dealing with that is a forever struggle that can live inside you (literally).

It begins with your body. You take your medication, you eat well, you exercise, but despite the positive impact these actions can have, you are still at the whim of the illness. Your loved ones love you, and the initial impact of a diagnosis can be as jarring and painful for them as it is for you. There is a difference there though. You continue down that path dictated by your illness and, though they are there for you, they are still in control of providing the support you are asking for, tolerating the depression and anger that comes and goes with every incident and able to step away when they can’t deal with it. It should be noted, though, that life is surely messing with their control as well and we can’t ignore that even a little.

There are other life circumstances that chronic illness creates for you. Financial issues, housing issues, work potential…you are at the whim of your current capabilities which, for the most part, are constantly changing. Moreover, you are no longer in control of assessing your capabilities. Strangers judge you, tell you what you should and shouldn’t be able to do, and support is issued accordingly.

If you rely on the kindness of others, those who through no blood obligation assist you with the aforementioned life circumstance, you are still required to adjust, be grateful and react as such. These are the toughest situations in my opinion, perhaps because I am dealing with these so directly at the moment. Life moves forward, and things change for those who love you and are helping you – at the same time changing their ability to do so. In those situations, when things change and people can’t sustain things you have been relying on or grown accustomed to, it’s painful for both parties. I have found, of late, that what is hardest about these situations is the inability to react. You are powerless to change things, powerless to hold back the feelings these out-of-your-control changes cause, and then powerless to let yourself feel them, save for hurting those who have been so vital to your survival thus far. Getting out of your head and leaving behind your reactions and emotions, because they are irrelevant and often detrimental to the reality of the situation, is difficult when you are busy grasping for any scrap of control you can find out there.

In the end, accepting that you are powerless is a step you are nicely told you have to take, despite also being told to fight your hardest for that control.  I feel, sometimes, that living life with a chronic illness for a while creates two versions of yourself. There is the you that experiences and the you that, though in a much less negative way than it is used to, has to learn to manipulate yourself, your emotions and your situations. You learn how to talk to your doctor in a way that gets you what you need; you try to create a private space where you can feel and not tire out those who try so hard to be there for you. You learn to nod and smile and limit your confessions as much as you can, you learn to take in information without processing it (trying to save it for later if you can remember) in order to avoid reaching that very near emotional edge you live on.

This all sounds so negative, but its just the reality of living with a chronic condition. Everyone has to do it, even without a chronic illness. Life’s a bitch, as they say. But for those of us with that chronic illness label, it is a looming reality every single moment of every single day for the rest of your life. Knowing you’re never going to get “better,” you’re just going to stagnate or progress. It’s harder some days than others. I sometimes wish there were pamphlets for this sort of thing. A letter to yourself that explains the need for these coping mechanisms, ones you would otherwise assess negatively, that is given to you on the day of diagnosis. It doesn’t have to be as long as this post. Something short and sweet I think:

Dear person who loves control,

Control will be a mirage you reach for, just like it is for everyone else (so stop thinking you’re the only one), but know the mirage you see will look a lot smaller, shorter and much harder to pretend is real than those a lot of other people see. This is the reality of your new lifestyle. Learn to love it, live with it or at least pretend until you can occasionally think that maybe you are OK. 

Best Of Luck,

Your illness

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