Coming To Terms With Our MS To Help Us Live Our Best Life

 “Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.”~Buddha

I wake up.  I open my eyes and lie in bed for a while, hoping to feel refreshed.  My thoughts run fast, trying to remember everything I need to get done that day.  How’s the weather?  A quick look outside tells me it’s still gray and chilly.

I sit up and toss my feet over the side of the bed, lifting myself off the bed one vertebra at a time as I slowly come to a stand.  That’s when it dawns on me again.  I wasn’t having a nightmare; I still have it.  I still have Multiple Sclerosis, and a small part of me mourns one more time.

Get over it, I tell myself.  You’ve had this thing for 26 years.  There’s more right with you than wrong.  I love that line. I say it quietly to myself a few times.  There. I feel better now.  I’m ready to face another day.

Since my diagnosis, I’ve learned to compartmentalize my emotions.  Sadness, depression, anger and joy are all a part of me, coming and going in waves depending on the day.  Through the years, I’ve taught myself how to deal with each emotion as they try to take ownership of me.  I’ve learned to acknowledge them, own them and toss them aside, because I choose to live a life of quality.

Right about now you’re probably saying to yourself, “How in the world can I do that?”  I’ll tell you a little secret: It isn’t an easy task.  But it is a necessary one.

I think a big obstacle for some people is admitting they are experiencing a feeling that is troublesome. In other words, instead of acknowledging a feeling and giving into it, they fight against it and push it aside (think of Scarlett O’Hara telling herself she’ll think about it tomorrow.) That simply doesn’t work.  I’m not a trained therapist, but you don’t have to be a rocket scientist to know that if you openly acknowledge a feeling and allow yourself to truly feel it, eventually it will either diminish or disappear.

Having MS is, in my mind, something akin to being in mourning.  You mourn the loss of a part of your body.  You can’t do what you used to, and you grieve for what’s lost.

“You will never do anything in this world without courage. It is the greatest quality of the mind next to honor.” ~Aristotle

There are 5 stages of loss and grief.  Generally these apply to people who are mourning the death of a loved one. I think they also apply to people diagnosed with any kind of illness.  The stages are as follows, and outlined for people with MS:

  1. Denial and Isolation: We learn of our diagnosis and can’t believe the news.  It has a strange name, and we don’t know much about it. We block out the details, and isolate ourselves from others.  We hide from the facts. 
  2. Anger: Once denial and isolation have worn off, we begin to feel anger at the doctor, our family and friends, the illness, our bodies and the world.  This anger carries us through the first waves of pain when we feel our loss.
  3. Bargaining: If we had recognized our symptoms earlier and gone to see the doctor, could we have avoided this diagnosis?   If I had been a better person would things be different
  4. Depression:  We’ve lost a part of our healthy bodies that will never return again.  We mourn the loss of our legs or arms or the ability to go a day without a nap.  We feel sad and we grieve.   
  5. Acceptance:  Learning to cope with our abilities, and not to focus on our disability, is a precious gift we give to ourselves.  We must teach ourselves to accept who we are. Maybe we can’t walk, but we still can write.  Perhaps we can no longer write, but we can still speak

We must come to terms with the way MS has changed our lives so we can accept who we are after our diagnosis.  Then, and only then, can we move on to living the best life we can possibly live.  After all, don’t we all deserve that?  You bet we do!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
Axelrod, J. (2006). The 5 Stages of Loss and Grief. Psych Central. Retrieved on March 20, 2013, from http://psychcentral.com/lib/2006/the-5-stages-of-loss-and-grief/

Comments

View Comments (15)
  • carol
    6 years ago

    I have not come to terms with my diagnosis. I was diagnosed in April 2011 and in a very short time I have gone from using a cane, to using a walker and a wheelchair. I still remember being able to walk normally and being able to run. Before I got diagnosed I dreamt about walking and thinking I would wake up and walk and do everything I used to be able to do. I have not had this disease for 26 yrs. My symptoms started presenting in July 2009 when I was 48. I am not living my best life now, that is all behind me. I cannot swing my legs over the side of my bed to get up. Why am I supposed to come to terms with this disease when it has taken away who I was? I don’t enjoy my life. I have always been a very independent woman and could take care of myself, now I can’t even drive to the grocery store. Please be more mindful of what you say in your blogs. I am being realistic not pitiful, I am still angry that my life has changed for the worse not better. I am not the woman I used to be and I don’t like the woman I’ve become.

  • Tammy
    5 years ago

    I understand Carol. I too still find myself mourning for the old me. Then I tell myself “it is what it is” then I can move back into acceptance mode.

  • Annie
    6 years ago

    Thank you for such lovely words of encouragement.

    Although I had been experiencing symptoms for a few years, I wasn’t “officially” diagnosed with MS until this past January. My PCP and other specialists chalked up the numbness and tingling to everything from sciatica to sinus infections. A neurologist finally ordered the telltale MRI.

    I knew very little about MS but learned quickly. The reactions of my family and friends frightened me… there was a lot of pity — even offers of canes and wheelchairs despite few physical limitations at the time. And so, I felt I had something to prove… I am still me, I haven’t changed.

    Fast forward to present day… I haven’t changed, but my body is different. Does that make sense? I stumble, forget words and wet my pants. But I am still me. I have learned to take one day at a time. I’ve learned to slow down and focus on each task so that I don’t drop things with my weakened right hand. I’ve learned to listen more intently and respond more carefully. I’ve become more aware of the pain of others.

    I don’t like that this painful and unpredictable disease has invaded my ordered world. Thank you all for being there and sharing your feelings… I don’t feel quite so alone now. Blessings of peace and comfort…

  • Deb Padovano
    6 years ago

    My daughter was diagnosed with MS about 3 years ago. She just turned 30. Just recently she started talking more to me about her symptoms. At first I felt helpless, I still do, but by her now sharing, I am beginning to get a better understanding of what she is going through. Joining this newsletter helps too. I still want to “fix” her. After all that’s a mother’s job. I know I can’t but that strong desire is there. Thank you for helping me to better understand what my baby is going through.

  • Cathy Chester moderator author
    6 years ago

    Deb,

    Thanks for leaving your comments. I watched my own parents struggle with my diagnosis 26 years ago. It was difficult to watch their “baby” go through everything. I think I was more concerned about them than about myself! But through education, like you are doing, it helped them better understand MS and what I was going through. Open communication is key; being there for her (as you are doing) means everything.

    Please feel free to tool around this marvelous website, and ask questions and leave comments. It will help you and, in the end, will also help your daughter.

    Best to you always,
    Cathy

  • Sonya
    6 years ago

    Cathy,
    Thank-you so much for posting this. I was diagnosed 6 years ago, & have been so fortunate, in so many ways. There are days, when my emotions do run the gamut, & I too, indulge in a good old fashioned pity party, complete with buckets of tears; and then like you, I pick myself up & go on.
    Thank-you so much for sharing.
    Blessings to you!
    Sonya

  • Cathy Chester moderator author
    6 years ago

    Sonya,

    You sound like the rest of us – strong, courageous and human! You should pat yourself on the back for handling your diagnosis so well, and facing it with bravery and honesty. I am so glad my post mattered to you. It means a lot to me.

    Best~
    Cathy

  • Ann
    6 years ago

    Could not have said it better! I try to live with a Positive attitude every day. It really helps, at least for me it did. Have to admit that at times I feel myself slipping into that “Pity Party” place….But I have always been able to pull myself up and get to a better place. Thanks for sharing your story, it helps when we know we are not alone.
    Annie

  • Cathy Chester moderator author
    6 years ago

    You could not have said anything nicer to me. I long to pay it forward and let people know they are not alone. We ARE in this together. Thank goodness for the Internet. It joins us as a community. Bless you, Ann. You are strong and vital and human with a pity party once in awhile.

    You go, girl!
    Best,
    Cathy

  • Joybo
    6 years ago

    Well said Cathy. Although we all handle our emotions differently we all HAVE them, certainly moreso with MS!
    ThE emotions you describe will re-appear with varying degrees of intensity even after 30+ years of RRMS (me). I particularly like the occasional “pity party” in which– even after all this time– I will occasionally indulge with a brief cry and a glass of wine (or a Xanax). Then it’s over and I’m “me” again, doing the laundry or just relaxing, being grateful for how much I *do* have, how much I *can* do, and admiring those around me with even greater challenges who take it upon themselves to help others, raise money and write BLOGS such as yours. Thanks much. With so much negativity all around us I appreciate your realistic yet positive attitude portrayed here.
    Cheers!
    JSJ

  • Nobu
    6 years ago

    Joybo and Cathy – I agree. I needed to establish time to feel crappy and sad. Just knowing that I have my time makes me feel better and in control as anything – which we really do know is not true for anyone with or without MS. All take care and don’t isoliate yourself if possible – people have many skills and talents so share them, or use those shared with you.

  • Cathy Chester moderator author
    6 years ago

    Yes, that’s why I wrote the article, Nobu! None of us should ever be isolated. We are a strong MS community that are here to share, support and educate each other. Good for you that you know how to control your time to help you feel better!

    Thanks for your thoughtful comments.
    Cathy

  • Cathy Chester moderator author
    6 years ago

    Oh, Joybo, you and I are in sync! A positive attitude helps, but we’re only human and as such we need to have a pity party once in awhile. We deserve it, and, as you said, the next day we feel better and ready to face a new day. Onward and upward, eh?

    Thanks for sharing your thoughts and your life with us. It is sincerely appreciated.

    Best,
    Cathy

  • Mattie
    6 years ago

    It really does help to know we r not alone. I feel alone all the time. I also isolate myself. Since 2004 can no longer drive due to my loss of vision and the intense body weakness.

  • Cathy Chester moderator author
    6 years ago

    Mattie,

    I am so sorry you feel so isolated. I wish you could try to be less isolated. Do you have any computer programs, such as a “Talk It”, that allows you to talk to the computer and it types for you? Have you contacted your local National MS Society (www.nmss.org) chapter to figure out ways to attend support groups or local MS functions? Do you have transportation services available to disabled people in your area for help? There is also a 24/7 services through National MS Society called MS Friends. They are a hotline of fully trained volunteers who are there to speak to people with MS. I suggest you give them a try. You can find information about them at http://www.nmss.org. I hope I’ve helped you feel less isolated. Keep us posted on how you are doing.

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