To the Chronic Pain Patient Feeling Guilty

To the patient feeling guilt,

Guilt is something that I have tried hard to scale down since my chronic pain started – and I think many of us are haunted by this. Guilt about causing our family and friends to worry. Guilt about canceling because of a bad day. Guilt about spending ”too” much time in bed instead of doing a thousand important things. Guilt about doing something fun even though we knew it would increase the pain. Guilt about choosing the wrong doctor or treatment. Guilt about not coping well enough all the time. It goes on like that.

So many times, I have heard that you should not let the pain control your life or keep you from doing anything. Honestly, I disagree. If you have a severe chronic condition, I think the pain can control you no matter what. It is there to remind you of it every day — and it does not help to ignore it instead of accepting the new terms. That is just pushing an exhausted body and mind too far, day after day. Maybe one of the guilt triggers is the idea of the perfect patient who lives life just as before.

For me, the difference is to enjoy the ride as much as possible in spite of the limitations that come with the condition. Sometimes that means spending my energy on friends, cooking or taking a whole day in bed. It also means that it is OK to give up once in a while, when the pain is consuming — or when you feel hopeless and view the whole world as unfair. As long as it does not result in isolating yourself. Of course, nothing good comes from getting stuck in dwelling and self-pity.

My point is this. Rather than blaming ourselves for what we did not get around to, maybe we should be proud of ourselves. Because it is a challenge to live with this. And every time we do the smallest thing despite the pain, it means that we are still trying.

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