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Grief, Depression and Multiple Sclerosis Diagnosis

By Merely Me Monday, January 18, 2010

 

When I was a college student I had taken a death and dying class where we learned about the stages of grief. I am sure many of you can recite the list from any introductory psychology class you have taken. There are variations of this list but mostly the grief stages include: Denial, anger, bargaining, depression, and acceptance. It is one thing to memorize such a list for a college quiz. It is quite another to go through these stages in real life. Grief does not know any boundaries of age, race, income, or gender. It doesn't matter if you live in a mansion in Beverly Hills or a one bedroom apartment in New York City. Grief will visit you one day. The time will come when you will experience a loss. Grief isn't contained to the emotions felt upon losing a loved one. One can also feel grief over the loss of a job, a relationship, or even your health. It is the grief experienced when dealing with health problems that I wish to talk about today.


For many of the people who come to Health Central to look up a particular disease or medical disorder, grief can be an accompanying issue especially if what you are dealing with is considered a chronic condition. On a personal note, this is how I came to find this health site. I was struggling to cope with my diagnosis of Multiple Sclerosis and was told about Health Central as a place to find support. I found that I was not alone in my struggle. In fact everyone who faces a diagnosis of anything from Bipolar Disorder to Diabetes will experience a feeling of loss. It can be frightening to hear your diagnosis. It can be even more daunting to hear that your condition is on-going and you will have to find ways to cope with it your whole life.


I am going to tell you about my personal experience with the stages of grief I encountered when I heard that I had Multiple Sclerosis. It has been over two years now (I got diagnosed in the fall of 2007) and I can honestly say that I have finally found some acceptance in all this. But some days I fall right back to the beginning stages and am in denial once again. Grief isn't some predictable point A to point B kind of thing. It isn't like you graduate from grief and get some sort of diploma saying you have achieved acceptance. It is more like you take things day by day, sometimes feeling every emotion at once, as you attempt to live with an uncertain future.


Denial
Through a strange set of synchronicities I *knew* I had MS before I had my first MRI. I remember experiencing some of the first symptoms of my disease such as muscle weakness and feeling off balance and sitting on the edge of my bed to rest. My mind was racing with the banner like thought of "What does this mean what does this mean?" And my mind would answer, "You know what this means." As each new and bizarre symptom would appear I would try to dismiss them with other logical explanations. "I must be tired, clumsy, or crazy." As more tests and doctors visits would lend credence to my impending diagnosis, I still clung to the thought that perhaps this was all some big mistake. It was not. I had MS. Yet even after the official diagnosis was made, I would ask the neurologist, "Are you really sure?" expecting that somehow my doubts could magically change reality.

1/18/10 2:55pm

hi

I took a grief class a few years ago.

Its strange,I feel more pain now from grief then I ever had

I've been trying to stop thinking of suicide.

Nothing interests me anymore

For the last three days i've been at my lowest point

Thank you

Jon

Anonymous
All of a sudden ... there
1/27/10 4:29pm

Jon,

It's well past when you wrote, and part of me hopes you're hanging in there because there's this life force thing, but I understand if you aren't.  I think I know how badly you feel / felt.  The grief can be deadening in itself.

 

If you're still there, please write again.  I do understand, and nothing is interesting me right now either.  I'm feeling so low also.  I would like to communicate with you.  To talk to someone in the same boat, not so we can sink our boats, but just to talk.

 

I hope you're there.

1/30/10 11:29am

Hi

I lose more friends than I have ever gained back

Most of my friends moved away

I guess I count the one friend that is still around

Jon

1/18/10 3:32pm

Thanks, Merely Me, for sharing this story with us.  I'm sure I would have felt the same way when you got the MS diagnosis - "Haven't I had enough??"  I feel fortunate that I don't, yet, have any chronic medical problems but as I get older, I fear that and if/when it happens, I hope I can take it in stride and not let it consume my life.  I think we all fear losing our independence or having to live with chronic pain.  And if we have a tendency to get depressed, anyway, it doesn't help.  I hope your future MRIs come through like the last one!

 

Thanks again for sharing your story.

1/18/10 6:23pm

Hey Judy

 

Yeah it was a kicker to realize that my health was impaired...I have been healthy my whole life and them wham!  You are hit with this thing...and you don't know what it is or what it means.  Mostly right now...my predominant emotion is...wanting to avoid it.  But then a symptom will come and...remind me...this disease is here to stay.  I just can't dwell on it or...it makes me a little loopy.  Smile

 

Thanks so much for your comment Judy.  How is the lexapro going this week?

1/18/10 8:22pm

The Lexapro is still working about the same - I feel tired and kind of apathetic, but less acutely depressed.  I'm just going to continue with it for a while and see what happens.  My big thing is trying not to feel guilty for feeling depressed!  It just gets to be a viscious cycle and it's a struggle to cut it off.  Thanks for asking!

1/18/10 5:06pm

Hi MM, your strength, candidness and talent with words to describe things is amazing...thank you.

 

I am feeling some fear and pain today...sadness?  also depression and anger...it's a lot of them (and joy is trying to peek out too!...)

 

:))...I feel pain from what they (my primary Dr.) says is fibromyalgia....it is just pain all over the body...

 

I don't know, I just try to live a moment at at time...doing, trying, sitting, not doing, then doing, trying, sitting, not doing....I'm exhausted

 

your words are so inspiring...thank you.  I have a friend with MS and she is up and around but she says she has pain...I am wondering if MS is a disease that one can have his or her whole life and not have symptoms...like hiv or herpes...I know some think that fibromyalgia is chronic and some say they have healed...so I don't know...

 

just musings...thanks for writing on so many topics

 

 

Marishka

1/18/10 6:36pm

Hey Marishka!

 

Well the one thing I do know about MS is that it is a very mysterious disease.  I suspect that I had my first symptom way back when I was in my early thirties.  But now in my forties...the symptoms are more pronounced.  There usually is pain but...it really varies from person to person how much pain is experienced.  I have muscle pain at times but mostly it isn't so bad.  Mostly the worst symptoms are the unpredictability that suddenly I can lose my ability to talk or walk or even think.  I don't talk about it much because...I don't like to dwell on it.  And...I am afraid too.  Fear is definitely a part of this as this is a progressive disease.  It is likely to get worse over time.  But I am not even going to go there because today...I feel good!  So I am grateful.

 

Anyways...from what little I understand about fibro...it can be very painful.  Are you taking meds for it?  Like I was telling you...the chronic pain site here has tons of members who have fibromyalgia (I never spell this right) and can be of support to you as you try to deal with this condition. 

 

I hope you are having a good evening.  Keep writing!

1/18/10 6:48pm

Hi MM,

 

Yes, I went over to the chronic pain site and yes, there I found many others who have fibromyalgia and who can relate, so thank you.

 

I guess weather effects it a lot.  Whenever it changes drastically from hot to cold or cold to hot, the pain is bad.  People on the site said this was true for them too. One lady said her husband called her a barometer, lol because he could predict the weather from how bad her pain was...

 

Well, I totally understand about not thinking about it...I feel that way too...we don't know how it will go...so just trying to stay in the moment too and enjoy blessings of the moment....:)

 

rain sounds very pretty outside and on something hitting the roof of my apt.:)

 

cheers,

 

Marishka

1/18/10 8:38pm

I have heard these stages of grief, but I have never been able to categorize my own.  I know with both depression and schizophrenia I have been through long bouts of really severe mental illness.  There were too many things going on to pay attention to grief...maybe.  Sometimes I believe people can suspend grief, but not indefinitely.  You can just dissociate and numb yourself, but perhaps that can be part of grief, too.  You have to deal with it sooner or later.

 

I guess I felt shock when I figured out my whole life was going to radically change.  Even though yes, my life needed changing.  I didn't want to change through becoming depressed and psychotic.  And then I didn't want it to change through medication and all the med side effects.  Maybe "the devil you know rather than the devil you don't."  I didn't want to have to stop working and rely on my parents in my late 30's.  I thought divorce would make me all better.  It didn't.  I thought having a steady boyriend would make me all better.  It didn't.  Everything came at a price.  And I wasn't ready to pay.

 

But then there was relief when I decided to listen to my inner self, the self that knew that I needed to take care of myself as best as possible in order to heal/recover.  And this didn't happen overnight -- neither the knowing nor the doing.  It meant letting go of my dad's expectations.  It meant that others, including family, would not understand my choices.  It meant carving out a new place for the new me.

 

I guess I did experience grief over the years I lost being married to an abusive husband.  Thirteen years.  None of them were good.  But I was kind to myself and didn't keep repeating, "Why did I let him get away with that for so long?"  I realized that during my married years, I just did the best I could each day hoping to pacify the devil.  And at first, I experienced grief when I realized I might never be able to work again.  To be doomed to live on a small pension and SSDI.  But then I realized my pension included health insurance for the rest of my life, paid by the company I had worked for.  And I was automatically signed up for Medicare after 2 yrs on SSDI.  So everything but a small yearly deductible and Rx co-pays is paid for.  Who else has it that good?  And the time I lived with Mom and Dad turned out to be when they needed me as much as I needed them.  Gradually, I took my eyes off my sorry self and began to see how the needs of others could be met.

 

I do feel anger sometimes when the schizophrenia makes me confused and forgetful, when it requires that I take medications the rest of my life, when I face stigma and misunderstanding because of it, when it makes it impossible to do even easy things at times, and anger when I just want one day without it.  And I realize that one day will never come.

 

But most of the time now, I can cope.  I rejoice that I have had enough courage to make it this far.  I rejoice that I live in an age where medication means I can live in my own apartment instead of an insane asylum.  And sometimes, just sometimes, I even see ways my life has turned out better because of mental illness.  Maybe I will write that up in a sharepost some day.

1/18/10 9:36pm

Donna...

 

You are an absolutely remarkable person.  You are honest about your feelings and what you have gone through but you never give up.  You always find something to feel grateful for.  I really like that a lot.  What you say at the end is especially profound about medications.  And yeah...I want to hear more about how mental illness has changed your life. 

 

Hey how is the job going?  are you feeling less tired and stressed?

 

I find myself looking forward to what you write...you always make me feel like...yes...life is worth living even to tell our tales to someone else.  You got it going on!  Seriously...find yourself a publisher...you have a story to tell.

1/18/10 10:49pm

Thanks for sharing Donna. It's really good to hear from someone who is dealing with her

conditions. I especially like your comment that you sometimes see hoew your illness has made you turn out better. That is the truth! Embrace that every day.

Anonymous
Rose
1/21/10 11:42am

Dear Merely Me, Thank you so much for sharing. Isnt it true that some people seem to get alot of suffering and illness and others seem to 'get away' and yet thats unimportant to recovery and comparison is lethal to anytype of mental wellness.

You have shone a light today on something -that for me is Denial. Your writing shone out like a beacon at me, I have been in denial about my Rheumatoid Arthritis. Just when I  have come to terms [somewhat] with a lonely, abusive,bullied childhood and also te fact that I'm a chronic sufferer of Depression - I have been denying the fact that my mobility is getting worse and worse. The worse the pain gets, the more lipstick and perfume and pretence I put on. Its fear, fear of loss of independence, being reliant and on who? Ive no family. Ive been fighting trying to wash  my long hair [shoulder length] not wanting to admit that its all too much and I am in agony trying to blow dry it. that I can no longer Dig the Garden and that when I kneel down I cant get up. My legs give way now, often. Yet, I wont use a stick. Vanity and fear. I am in great pain alot of the time and yet I cant accept that I cant be like others and that I havent got much energy either.  Today I have to step out of Denial and I have you to thank for that Merely Me.  Sending you best wishes and thanks for sharing.

1/21/10 11:58am

You are amazing and brave.  In 1991 I took an HIV test while in the hospital.  I was told there was good news and bad news.  The good news - I was negative for HIV.  The bad news I had Hepatitis C.  My world was rocked I didn't know what to think.  I was glad I was HIV negative but still thought I had been given some kind of death sentence.  I really had no information and was amazed when the appointment with the GI doctor was 2 months in the future.  I thought, "here I am dying and they want to wait two months before they see me."  Since that diagnosis I have also been diagnosed Bipolar.  For Hep C there was no cure but there was treatment so I took it.  It went on for a year and I had to have weekly injections of Interferon and take anti viral pills every day.  After a while I had to have two weekly injections because the Interferon kills red blood cells and I had to take Prokrit also.  It was a hard year.  Recently I had a blood test and there was no Hep C discernible in my system.  What a blessing!!!  But no such thing will happen with my Bipolar diagnosis.  Yes I am being treated but it will never leave my system.  I always live with the fear that it could rear it head, knock me off course and send me to the hospital.  But I live a charmed life.  God has let me survive when so many others fell by the wayside.  I cannot be grateful enough for these years of sobriety and the chance to help others and not be clinically depressed all the time.  It takes some courage to change your life; but God knows it takes daily courage for you to live yours.  You inspire me.

1/30/10 10:42am

Hi Anne!

 

I have been meaning to come by to respond to your lovely comment for some time now.  Thank you so much for your kind words.  But sincerely YOU are the brave one.  I am so glad that you are well now from the hepatitis.  That is something that you had to wait so long to see someone! 

 

Bipolar Disorder can be extremely difficult to cope with but you are doing an amazing job of it and...I love it that you have found ways to still remain centered and grateful.  There are a lot of people who would feel bitter having been in your situation.  It is no wonder that you are so resilient. 

 

Thank you for all that you contribute to our site.  I definitely want to read more about your experiences and just how you have managed to cope with all that you have been given. 

 

I hope you have a wonderful weekend.

1/30/10 11:25am

you are also very brave.Some might have thrown in the towel.

They might have been trying to commit suicide

As long as there is hope, we keep on living

Jon

Anonymous
depression/c/164003
1/30/10 10:23am

MerelyMe, you are an amazing person.  Your ability to share your life with others through blogging and writing articles such as this one is something not all of us can do. 

 

I tend to draw into myself at bad times.  I do have a therapist, though, and am able to talk with him in person once a week, by email when I want to share an article or feelings with him, as well as by phone, if I am in crisis.

 

Like you I have several life-altering conditions:  treatment-resistant depression, frequent migraines, obstructive sleep apnea, and fibromyalgia impact me the most, as they tend to exacerbate each other. I cope by taking meds, talking with my therapist, reading online on sites such as this, visiting with my two daughters and my precious 2-year-old grandson and getting them things they want/need, watching interesting television programs and movies, and reading books.  Almost 3 years ago I was implanted with a vagus nerve stimulator.  Although it hasn't pulled me "out of the black hole," it did pull me back from constantly thinking suicidal thoughts.  I was able to get the VNS through my Medicare just before it no longer covered the implant and surgery, and I am glad to have it, even though the effects have not been as great as I had hoped.

 

I hope this is a good day for you!

 

 

1/30/10 10:33am

Thank you so much!  This is so nice to hear that my words can be of any benefit to someone else.  I try to be as open and honest as I can about my experiences so that others can feel more open too. 

 

You have been through a ton!  These are difficult conditions you are coping with.  I am especially interested that you got VNS and was wondering if I could interview you sometime about the whole experience.  I haven't known many people who did this and I am very curious and I think it might help our members to understand more about what this treatment entails.  So I might write to you through your email here if you don't mind.

 

Thank you again for reading the posts here and for commenting.  I really appreciate it.

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By Merely Me— Last Modified: 09/17/11, First Published: 01/18/10