Stages We Go Through With a Chronic Disease or Condition

From Dizzjo on our old forums:

I put together this list of the stages that we go through, from the initial shock through acceptance and hope, when living with Meniere's Disease or any other chronic disease or condition.

I was just thinking that the phases that we go through when first diagnosed and having to live with a life altering or chronic disease and how similar they are to the same phases you go through when grieving.

1. Shock, when initially diagnosed because it takes you by surprise and hearing that there is no known cause and no cure are harsh words to hear. Why me, why now? What did I do to cause this? You feel stunned, immobilized.

2. Emotional release or pangs of grief and distress. The feeling you get when you think no one cares and you are alone. Anger that your life is compromised and you can no longer function the way you once did. You feel helpless because things are out of your control. This is a time when you are desperate and seeking help and knowing that you may not find it and the medications, treatments, surgical procedures are not working in a way that you expected them to. The major pity parties and maybe even some denial (refusal to believe what is going on) fits in this area, certainly frustration is here too. (Include other emotional issues you have here.)

3. Panic, the feeling that you don't know what to do next and learning how to cope and manage things that are overwhelming you and you don't know which way to turn, what to do next. Doing the simplest things turn into major frustration and confusion and thinking rationally becomes impossible.

I think this is when we are still grasping at straws trying to find the "magic" that will make us well or at least control the monster we are living with. The Meds, the injections, the surgery, and trying to decide what approach we want to take becomes a major task.
Which shall I try, what do I do feeling, where do I go for help and understanding? Why is this working for others and not working for me?

4. Guilt, when you realize that you cannot do all that you used to do and your life has changed and especially when having to go on disability. You feel guilt for not pulling your weight, for placing burdens on others that once you were able to handle. Your lifestyle is changing and it is out of your control.

I lived the guilt stage for at least a year. Guilt when you no longer able to participate in social things the way you used to, etc. The guilt others inflict on you (and you allow it) when they tell you that you look fine and what is your problem and are you still not feeling well and how are you now that you aren't working, are things getting better? Constantly defending yourself and validating yourself to others. (Gosh I hated that!) Trying to prove that I still COULD do it all and feeling bad when I no longer was able.

5. Hostility and anger. Frustration could also go here again. Why me, why now. There is a feeling of total lack of control over what is happening and anger that you no longer can do what you used to do quite well. The inability to make yourself understood or to understand others. We have anger at those who don't understand and don't seem to care. We feel angry at ourselves for our own feelings
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6. Inability to resume a normal life, because what was a normal life is no longer possible. Everything has changed. Your life is upside down. The helplessness and hopelessness you sometimes feel. You are still trying to prove that you can function the way you once did and can't or not able to. You can't see anything positive in your future. You are too focused on the things you aare not able to do.

7. Acceptance, when you finally "get it"; that nothing will ever return to the way it used to be and you need to rethink how you do things and learn to accept help from others and admit your limitations. You can accept the dizzy days, the vertigo, the hearing loss, the inability to function normally, and all else that goes with it.

8. Hope, when you see a new way of living emerging and you are content with yourself and happy and can move forward but on a different path from the one you were on. You make accommodations and set short goals and realize that they may never bear fruit and you are flexible enough to accept that. You realize that there is still life in you and you just are living it differently. You begin to focus on what you are able to do and not on what you can't/not able to do.

I have seen many people going through these phases of shock to finally acceptance and hope. I think that we see a lot of anger and hostility at times. I just say to myself that this is all part of the process. This is how I feel about the phases we go through, living with a chronic disease. I hope it helps others.

Remember that we are all individual in the way we handle things and when we see anger, pity, guilt, that this is all part of the process before we can learn to accept our changed life and live with it and refocus on what we have that we are able to do.

Some of us pass through stages over and over again or get locked in one stage longer than someone else. We all pass through at different speeds and that is fine. YOU are okay. This is NORMAL.

It was only when I was able to look back on the path I had traveled that I saw where I had been. I remember writing this and giving it to my Dr. to let him know what I thought about how this affected me. He and his nurse said they had made that observation themselves about different patients they treated. I think he was happy to see that I had finally reached the hope stage because I was a terrible patient when I was in the denial, anger, and pity stages.
dizzjo