Stages We Go Through With a Chronic Disease or Condition

Discussion in 'Meniere's Disease "Database"' started by dizzjo, Sep 27, 2006.

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  1. dizzjo

    dizzjo One day at a time & baby steps!

    Stages We Go Through With a Chronic Disease or Condition

    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 8)
  2. Flodur

    Flodur New Member


    I'm living in Europe and don't write correct the English language. Sorry for the mistakes I make !
    I find your post very, very, leanfull .
    On the other hand I'd like to know what are the real causes of this unknown disease??
    I read a lot of mails en forums where everbody talk en speak about "STRESS" as being one of the major causes of Meniere.
    But what kind of stress???
    My personnal pont of view about stress in this these cases is that it would be strongly associated with "relational" and "conflictual" stress, rather than stress induced by job or other physical stress?
    Exemple :If someone is "physicaly" not satisfied with his appearence :this can cause real stress in his life but of course this depends of each one's emotional strength to manage this type of conflictual situation.
    Secondly, constant familial conflict may have the same effect : Emotianal stress.
    I find it very important to know first off all, the reasons or cuases of this kind of illness.
    Does someone wrote about their personnal, emotional, or conflictual, problems??

    What do think about this??

    I'm with you,

  3. Joe the Bee

    Joe the Bee New Member

    I read about Stress being a possible cause, but what I also have read on mostly Dutch sites that 95% of the people who get Meniere's are very, very busy and creative folks.
    I recognized myself in that, because before I was forced to take it easier, I often worked 12 to 18 hours a day and sometimes didn't even sleep. I just went on and on and on.
    These days, I pay the price when I go on endlessly again. I get sick, dizzy, banshees driving me insane, but then I slow down and take it easy for 2, 3 weeks and things improve again.

    However, I don't think that there simply is 1 cause to be named for Meniere's.
    Since we all are individuals and different, I firmly believe that some people get MM when they're exhausted and others when they're stressed out. I even think that others get it after other diseases, medications or surgeries.
    But, that's my opinion, feel free to disagree with me.

    Love, Joe
  4. dizzjo

    dizzjo One day at a time & baby steps!

    For the record - there is no known cause and no cure for Meniere's disease. There is a lot of speculation and individual thoughts on the subject, but nothing yet proved.

    Both these questions should be brought up on the main forum (living room) - this post was about the stages we go through learning to live with our diagnosis.

    I hope both of you will post again on the main forum where I am sure you will get a lot of responses.

    Stress can be a trigger for attacks and a trigger for just about anything we are dealing with. How we handle stress is the key. Everyone had stress in their lives. Whether we maximize it and focus too much on small stuff or learn to deal with it, is the key.

    Stress was not the topic here.

    If either of you read this - repeat your question in the Living room.
  5. dlbach1

    dlbach1 New Member

    This is a form of the grief cycle. (I used to be a counselor) I realized I was stuck in the 'Anger' phase and had to seek help from a psychologist. Thank you.
  6. dizzjo

    dizzjo One day at a time & baby steps!

    HiI dlbach1!!
    Reading about the process of grieving is what prompted me to recognize what was happening. I realized I was going through or had gone through the grieving process. I didn't see it till I had passed through it. I had never thought of accepting a disease as being something you mourned for.

    We lose a certain portion of our quality of life, but we keep on living and learn to accept things and redefine what our new normal is. It is all a process.
    I wonder if someone had told me about this when I was going through it, if it was normal - would I have believed them?? There seem to be pivotal times in our lives when we have that "Aha!" moment and scales fall from our eyes and we can see what is happening. That was mine. I am glad you read it and understood.
  7. jparenteau59

    jparenteau59 New Member

    For me, being a wife, mother, and business owner, guilt was my big one. I stayed with guilt for many years. I finally moved forward to hope. I like this stage much better. Jeanne
  8. chez57

    chez57 Never invisible but always transparent

    just wondered if there should be another stage in here perhaps before shock or just after - DENIAL

    Thats where I am at the mo.

    Denial is that whilst you really know what it is or are being told what it is or what it is suspected it is, you just keep telling yourself "no, it can't be - it'll be something else". Clinging onto all the other things that non-specialists keep telling you. Good example this week for me was someone at work said " oooh yeah there is a lot of people off at the moment feeling dizzy we reckon it's the new building - sick building syndrome". So it's not me that's ill - it's the building!!!

    I have clung onto Labyrinthtitus, BPPV, low blood pressure and sick building syndrome so far, I am sure I'll find some more until someone finally says it is definitely MM. I am sure that after a full dx there is the thought running through your head "could they be wrong"

  9. hydrops

    hydrops New Member

    Dizzjo: GREAT information. Thanks a bunch for putting that up.
  10. mrs_kamm

    mrs_kamm Sorry.. is the Noise in my head bothering you!

    I am in the mad stage GRRRRR.... I have accepted and aknowledge that this is part of me but it angers me when I start feeling like I am going to have an attack and yes I get those wonderfull Drop down attacks And the Stages is just a vicious cycle, It never stops..
  11. Sami

    Sami New Member

    Bumping up for some special people. (This was written by Dizzjo.) Maybe this can help in understanding some of the stages that many go through. I sure hope so.

    Wishing you well.....
    Sami..... :)
  12. CdnTBear

    CdnTBear Every minute spent in anger is a minute wasted

    Oh my gosh ... you are so wonderful to lay this out there. I hit "GUILT" in a major way, just last week, this past weekend ... right now. I've cried buckets and buckets to my hubby, telling him how sorry I am that I'm adding so much stress to him. Not only is he doing double-duty at home ... we own a business and run it together. I am the office manager and I have not been able to work for past month and a half.

    Thank you, thank you, thank you. It really helps seeing the stages. Because the LAST thing I feel right now is normal. ;D
  13. Kit Kat

    Kit Kat New Member

    I'm a newby to all this and just found the web site. Dizzjo, you're God Sent! I didn't understand all these feelings I was having. This has helped me more than you will ever know. Not a day goes by that I don't tell HD how sorry I am. I feel like this is because of something I did. Don't stop passing on the things that go on in your head. Kit Kat
  14. missbelle

    missbelle New Member

    my god i feel like i go through all the stages over and over again....i hate it...sometimes i wanna cry..sometimes i wanna scream..i panic for the future...i am sad of the life i had and how invisible i thought i all sucks...
  15. ~Becky~

    ~Becky~ New Member


    Thank you so much for committing this to the internet! My road with MM has been a long one, as I began having problems in 1996, but wasn't properly diagnose until 2002. Now, I am struggling with the acceptance and anger aspects of it again because I've developed the vertigo associated with MM, something I had hoped that wouldn't happened. Like missbelle, I have bad days where I just want to cry, scream, etc...

    When I get to work in the morning, I will print this out and post it on my bulletin board, so that I can see it every day...just as a constant reminder of someone who's been there and knows that there is hope at the end of the tunnel.

    Thank you, thank you, thank you!
  16. LisaMarie

    LisaMarie Scuba Diving in Key West

    Thank you so very much for writing that.

    GRRRRR I am still in anger!

    You were very eloquent, and I appreciated that very much.
  17. Genesis74

    Genesis74 New Member

    Hi everyone I am new here, and new to this wacky world of MD. I am still in shock. Not yet angry. Mind you I am mad at my husband who just made the comment that "Millions of people have this and they all seem fine". It was like he was saying that I am making a mountain out of a mole hill. I try to tell him that everyone is different and the struggles that I am going through is real and new.
  18. Trina

    Trina New Member

    I've been officially diagnosed recently (after 5 years of symptoms without hearing loss), now that I have hearing loss they say I definitely have it. I'm still in denial too, I still want the diagnosis to be something else.
  19. terry2

    terry2 New Member

    Thank you so much for this information. I am really feeling guilty now. I work part-time, run a small in home business and take care of my 76 yr old mother. She gets upset if I can't go & do everything she wants to do. She right now is not talking to me because I am sick. I have pretty much locked myself in my room. I have severe Bilateral Meniere's plus AIED, diabetic & supposedly 9 other diseases in one body. Meniere's in out of control right now. I just recently saw my dr & they shot steriods in my rt ear. Everything went really bad. I went into the worst attack I have had in yrs, dehydration, and been mostly in bed. My mother informed me she was tired of listening to me complain. I have not seen her very much since Fri. do I don't know how I could be complaining. Thank you for your time and posting. It was really helpful.
  20. DondiDo

    DondiDo New Member

    Terry2 Bless Your Heart! My Mom (70 years old) has MM and understands everything I'm going through. Her MM has "burned out" and she wears hearing aids. I can't imagine what I would do without my Mom's support.

    I feel that I'm in several stages at once: the poor pitiful me, trying to be normal, hope filled person.

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