Our PSC Journey

Grieving the Loss of a Normal Life: Facing Chronic Illness

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Endless hospital stays. Ineffective treatments. Emotional distress. Physical exhaustion. Fearing hopelessness. How is it possible to live a normal life under these circumstances? How can a person cope? What is the solution?

Grief. Mourning. Crying until you can’t cry anymore; have a few days reprieve and repeat.

That’s the solution.

I’m not trying to sound callous; the opposite actually. It may be one of the hardest objectives to face in the light of chronic illness, but the reality is that those affected by it will not live a normal life (not having a “normal” life does not mean that life must be miserable, in fact, Sean and I are striving for quite the opposite). Along with accepting the reality of the chronic illness being a part of your everyday life (or the knowledge of that necessity is there), in my opinion, the next step or co-step is grieving the loss of the normal life you once had or dreamt of having.

My Personal Experience…

Very recently (today) I realized there needs to be a distinction between hopefulness/denial and reality/perceived reality.

Sean and I often take turns reminding each other that our situation is not hopeless and that there is a purpose behind his PSC. Which is absolutely true in every way.

However,

it is essential that our lives be different from the norm. Long nights in the Emergency Department are necessary to maintain his health. Missed days of work for both of us are a give-in on a regular basis. Social plans are often changed at the last minute to accompany a medical emergency. There is a lot of time spent at home, for both of us to recoup from events related to his PSC.

To be the spouse…

People understand why Sean’s not at work. He’s in the hospital. Of course, he can’t be at work or church or other social functions during those times.

For me, the spouse, it’s different. My husband’s in the hospital, but I’m still expected at work. I’m not the one who’s sick. I’m the lucky one. (And, no, I’m not saying Sean’s lucky because he gets to miss work all the time. It eats at him. He wishes he could be healthy and work full time.) But I don’t feel lucky.

I feel discouraged and hopeless and completely without control of the situation. I feel guilty for wanting to take time off of work to be with my husband. I feel guilty for not being appreciative for my job and my ability to go to work.

Accepting Chronic Illness

It’s not a step-by-step program to freedom on this one I’m sorry to say.

It’s accepting that something totally out of your control is now dictating a lot of the decisions you and your family will be making. It’s an on-going process as the illness will change and/or progress. New challenges will arise, areas of your life that you didn’t realize would be affected now are, so acceptance is something you will need to work through again and again.

This process is not without hope. Acceptance is a continual process because you are staying conscious of what is happening to you and the ones you love. That means, even though it can be heartbreaking, you are still living and feeling and moving forward. And, that is an AMAZING thing!

Allowing Yourself to Grieve

This is where I am at this very moment. It is the spot I find myself coming back to at unexpecting times. It is accompanied by hopelessness, self-doubt, deep discouragement, anger, and a lot of tears.

I am just starting to realize that those emotions I have been feeling are from grief. They come out of nowhere. I believe that I’m doing well and that the current hospital visit will be a positive one. Then all of a sudden I am curling in on myself crying inconsolably and mad at the entire world for what is happening to me.

Brene Brown’s Rising Strong is the resource that has helped me realize the presence and necessity of my grief. The beautiful thing as Brene describes it is that grieving is part of the process of being wholehearted. What that means to me is that allowing myself to feel and work through these heartbreaking realities is a positive thing. It is a necessary thing.

I just want to leave you with a few things that I am working to rememer myself as I work through this process of grieving.

4 Things I’m Striving Towards Through my Grief

1. It’s ok to cry. It’s ok to have and show emotion at absolutely any point throughout this process.

2. It’s not going to be fun in the moment, but it will be worth the outcome.

3. Keep crying and ranting until I find my way back to the Lord.

4. The presence of grief is not the absence of hope.

I’m grieving the loss of the normal life I always dreamt of having. Is there something that you are grieving? I encourage you to reach out for support to those around you. I believe part of our reason for being is to support each other and to need support from each other. There is balance in that.

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