Admin Post 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 . 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
The one thing I have found, is that we are our own worst enemy when this starts. We get sick and we wonder what we did to deserve it, wonder why God hates us, why the cosmos wants to ruin our lives, and so on, and so forth. Dealing with this stuff as long as I have I realized there are two parts to it. There is the part that makes you sick, then there is the mental hell we put ourselves through wondering why. Well, we can pretty much assume it's infection based at this point. You may or may not be able to cure it, but at least you know you didn't piss of Buddha or that kicked a dog in your last life. I describe the depressive stuff as being like the Dementors of Harry Potter. They suck the joy out of you. And the brain fog, inability to concentrate. The other part is the worry and anxiety you get wondering why. Well, now we know why. It's infection based. Nobody stuck a pin in our voodoo doll. It can help to realize that it's not because you're a bad person.
Some may think I am crazy but having bilateral MD and the awful years of stages 1 & 2...I happily accept stage 3 when it came along because although not a remission because I still suffer hearing damage and tinnitus, I am relieved to not suffer the severe vertigo attacks like I did before. They kept me down 3 to 4 days at a time. The worst part for me at this stage so far is the loud noise sensitivity. My son swears I have ptsd from it....which I feel may be true.
Good list Solari, thanks. I'm between #5 Hopeless and #6. Accepting. I just don't care about anything anymore. Mostly it's the fatigue. I'm going to an endocrinologist in a few weeks and really hoping he can figure out what's wrong with my energy.
This eight stage-based grief model appears to be an expansion of the Kübler-Ross model. Said model, proposed by Elisabeth Kübler-Ross, is also referred to as The 5 Stages of Grief. To further Dizzyjo's caveat to the point of disclaimer, while the eight emotions listed may be experienced, & possibly experienced in the order provided—though improbable—what we see when studying grief looks far less like a linear set of rigid stages & much more like a disarranged, nonlinear, stageless, anarchic process featuring a beginning, & likely—hopefully—a return to pre-event stress levels—which isn't technically synonymous to 'an end', as most people who have lost a close friend, lover, family member, or have been diagnosed with a disease or terminal illness will understand. It is, for instance, common for an individual to experience only three or four of the eight emotions listed. Perhaps less. Acceptance is often found & thereupon lost. An individual may experience all eight emotions in addition to many more in random order over many cycles. Cycles can reverse, emotions can invert, bulge, & subsequently rapture, shatter, or splinter into many overshadowing subcaudal or associated emotions, of which this eight stage-based model fails to list. An emotion may bleed into a random other with no clear distinction separating one from the other, too. It is true, as Dizzojo mentions, that many "get locked in one stageemotion longer than someone else", however this serves as no reason to assume that all eight emotions will in fact be experienced, that the grieving process is in fact linear, that it features stages, that all eight emotions will be experienced in the order presented, that a latter emotion requires an exclusive former in order to arise, or that many more emotions won't be experienced. I mention this not to highlight the lack of empirical evidence supporting any & all stage-based grief models, nor to engage in debate, bur rather, & more importantly, in an attempt to a) prevent the unnecessary adoption of a listed emotion, such as anger, by a suggestible individual who otherwise wouldn't experience, nor require to experience the prescribed emotion/s, & b) to circumvent the additional stress, or when concerning the hypersensitive, the additional trauma experienced by those who, after having been prescribed a stage-based grief model, conclude that they are grieving insufficiently, or incorrectly.
