When we're diagnosed with a chronic, persistent, terminal, or serious illness we go through an intense emotional process. Let's make sense of what we're going through
Getting diagnosed with a chronic or persistent disorder can be life changing, in fact it may be one of the hardest things we’ll ever have to deal with. These emotional stages are inspired by the Kubler-Ross Model of the Five Stages of Grief and Loss.
"Finally, so THAT'S what's happening!"
Relief is not traditionally on the Kubler-Ross Model but it is probably the first thing many of us feel when we are first diagnosed with a chronic illness. Usually, before receiving a diagnosis, we deal with uncomfortable symptoms, indescribable pain and discomfort, hours of testing, experimenting with a cocktail of medication, and bouncing around from specialist to specialist. Not knowing what’s happening to our bodies can be scary and emotionally draining. So, often times, when there is a term that encompasses all the crazy things happening to us, we feel relieved. A diagnosis means that the guess work is over, that other people may understand what is happening to you, and that it's time to move forward with treating yourself. A diagnosis can make us feel a little less crazy, a little less isolated, and a give us a little more hope toward our future.
"There's no way this is me. It can't possibly be me."
Denial is the stage that’s easiest to linger in. The longer we ignore our diagnosis, the more resistant we are to make changes, the easier it is to not accept the diagnosis. Especially in regards to our bodies feeling "okay", its a lot easier just getting by than putting in the effort to change for the better. Denying the diagnosis does not eradicate the diagnosis. It’s like my pet cat who buries his face in blankets, pillows, and curtains to hide when he’s scared – he leaves the rest of his body exposed but his mindset tells him that if he can’t see the danger, the danger can’t find him!
"Why the hell does all this shit happen to me?"
For those of us who experience anger after a diagnosis, we know it can be in short intense bursts or long, drawn out resentment. Anger can be directed toward people who may seem healthier, or to those who lack understanding. We may even direct our anger toward our doctors, nurses, employers, and strangers. Out of all the stages, anger toward a diagnosis is one of the hardest things to come to terms with; after all that would mean forgiving our body and self.
"I just joined a new club, and I'm making lots of new friends and meeting great new people, but I'll give it all up if I can just be better again. I'll make a deal with god/higher-power/universe"
Bargaining is common and persistent when we deal with a chronic illness diagnosis. We ask ourselves if things would improve if we changed aspects in our lives. Some people choose to make promises within their religious groups, others may choose to end relationships and friendships as a form of self-sacrifice. When we bargain, we add an extra layer of stress to the body. We keep ourselves from enjoying the things that we used to out of fear rather than as a conscious decision to change. Understandably, we may need to make the decision to give up certain foods or activities but most often, bargaining does not come from a place of mindfulness and can result in pain and regret.
"Oh god...everything has changed, what am I going to do?"
Fear, another stage not typically listed in the Kubler-Ross Model, is one of the most intense things we feel when we get diagnosed with a chronic illness. We fear for our future and the changes we will have to make, we fear for the dreams we once had – and whether or not they are still achievable. We fear the reactions we’ll receive when the people about us learn. We fear telling the people around us. We fear the changes in our bodies. We fear being a burden, to ourselves and to others. We fear that we have nobody who understands us. We fear the seeming isolation and stigmatization that comes with living with a chronic illness.
Depression, or rather being in a depressive state because of the diagnosis, is natural. When our brains and bodies don’t know how to process the news of the diagnosis, we shut down. We start to lack motivation; we ask ourselves what the point in trying even is. We may eat more than usual or we may completely stop eating. Sleeping patterns change. Relationships change. In short, we stop nurturing ourselves, we approach each day with an intention to just barely survive, not live fully.
"OK, this is happening...what can I do to make it easier on myself."
Acceptance is the most powerful of these stages, it’s the force that guides our bodies toward healing, it’s also the stage that is hardest to reach and easiest to abandon. Accepting a diagnosis does not mean that we are content with the diagnosis, rather it means that we are ready to move forward. Ready to move away from the weight of the depression, free yourself from the isolation of fear and denial, calm the fires ignited by the anger and bargaining.
Accepting a diagnosis makes it easier to listen to our bodies and helps you stay motivated when following a careful diet and lifestyle. Acceptance makes it easier for us to live more comfortably and to know how to manage your symptoms.
Most importantly, is that you accept that you are not your diagnosis. You are not defined by your diagnosis; you are not controlled by your diagnosis. Your diagnosis does not control you, it does not stop you from loving yourself, it does not keep you from happiness. Your diagnosis does not hinder you from following your dreams.
In the grand scheme of things, you accept that your diagnosis will not destroy your life. And that, my friends, is a beautiful feeling.
Remember, that while we live with a chronic illness, there is a high chance that our bodies will constantly move through these stages. Even in a place of acceptance, we can sometimes temporarily slip into one of the other stages. This is fine, this is normal. Acknowledge your feelings, listen to your body, then pull yourself back into a place of health and acceptance. Follow a meditation practice, maintain a proper diet, surround yourselves with people who warm your heart, and with hobbies that give you a sense of pleasure. And don’t forget to remind yourself how strong you are, remind yourself, that no matter where you go, you are not alone, keep telling yourself that you are more than your bad days, you are brighter and braver than the diagnosis, that you love yourself, that you are a fighter. Everything will be alright.