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The Most Important Thing Doctors Fail to Tell You About Having a Chronic Condition


Reaching acceptance of a new normal is often the most difficult hurdle to clear when coping with chronic illness. This is not surprising when one of the most frequently overlooked struggles we spoonies face, and what our doctors most often fail to tell us, is that we may experience a period of grief.

Yes — I said grief, the same grief that occurs with the loss of a loved one. There is a reason for this: Quite simply, you have lost a loved one — you have lost you!

You have lost the person you used to be and therefore may feel you have lost your sense of identity. You may have lost your social structure due to the inability to keep up with the activities of your church, your job, and even your circle of friends. You may need to change your living situation if you can no longer work resulting in a loss of the comforts of home. You may even lose the support of relationships you depend on if those individuals fail to recognize your chronic condition.

The result of these escalating losses, if not addressed and managed alongside the medical treatment of your chronic condition, can lead to additional complications such as depression, anxiety and maladaptive coping mechanisms. This, in turn can result in increased pain, further loss of motivation, increased fatigue and additional changes in sleeping or eating patterns all of which make managing your chronic illness even more difficult. The result becomes a self-reinforcing, vicious cycle of intensifying symptoms and negative emotions.

But you are not told about this in the doctor’s office. You are not told that you should expect to feel the disbelief, denial, anger, guilt and overwhelming sadness of grief. You are not told that these emotions are normal. You are not told that you need to work through these emotions or how to handle the perfect storm of emotion that inevitably will affect your symptoms.

The scary truth is that after receiving a diagnosis you may experience the emotions of grief over several weeks, months, or even years. You will likely move between the varied emotions — or stages — of grief resulting in periods where you accept your illness, other periods where you rage against it, and even others where you are stuck in a fog of despair.

The even scarier truth — this, too, is all normal.                                                                                     

The undeniable fact is that you must grieve for the person you were so that you can move on and accept the person you are.

This process may feel like yet another battle you must wage, but it is a battle you can win. More importantly, it is not a battle that you have to wage alone, either. Grief counselors can be very effective in assisting us through the process of grief. Having an open and honest dialogue with your doctor about your emotions and the grief you are experiencing can open the door to treatment options that may have otherwise remained closed. Online and local support groups can offer the emotional encouragement that may be lacking.

It will take time, but like all grief, the days will eventually brighten, and the fog will eventually lift.  What is important to remember is that, even though you were not told this ugly truth, what you are going through is normal, and you can work through it.

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