Getting Through the Holidays Without You

Getting Through the Holidays Without You

As the holiday season is upon us, if you are like me, those that are no longer with us seem to penetrate the consciousness and soul more intensely than ever. Each loss we experience alters the reality of our lives no matter if it is the loss of a parent, child or friend. But this sense of loss seems to be particularly acute during holiday celebrations. As we try to keep our spirits up during the chaos of the season, we sometimes are shocked to find ourselves feeling a deep sadness. That makes us human as we experience the intense desire of longing for that one more moment to be with that person we miss and so loved in our lives.

I find that our family traditions tend to jolt me into remembering that person. Simple things like setting a candle out, hanging a wreath, putting ornaments on a tree, cooking a family recipe are triggers to remembering that person who once shared such joyful celebrations. But is that a bad thing? If that person is in our heart, it also comforts us to know they are still truly part of our life. They remain with us in an unbreakable spiritual bond.

Ellen Lenox Smith

I don’t know about you, but living with chronic pain, there are only certain people who have chosen to take the time to understand the impact of my chronic pain. They have also provided the invaluable emotional support necessary to sustain that sense of normalcy so often missing in the lives of those suffering chronic and often debilitating conditions.  So, to lose those special persons can prove more painful. Living with chronic pain can mean the loss of friends can intensify one’s isolation. So to lose that special person or persons that did not abandon you due to your acquired complications can often be emotionally overwhelming.  But, if that person you lost was one of the negative judges to your life, you also are reminded of that hurt and the fact that maybe you never forgave them or came to terms with them, another loss in its own way.

Through my fifty-four years of searching for answers as to what was wrong with me, the two people that always believed in me and knowing there was an answer out there for me, were my parents. They knew my character and passion for life and never once doubted something was wrong, despite getting no answers for fifty-four years. Unfortunately, that was not the case with most around me. I looked so normal to many that they assumed I just needed to see a psychiatrist and get my head straightened out! It was painful and emotional enough to lose my career, face surgery after surgery to get my walking, breathing and extremities working better, that to lose support with so many felt so cruel and unfair. Had my diagnosis been cancer instead of Ehlers-Danlos Syndrome, I am guessing those same people would have instead embraced my journey with love and support. It has taken me years to learn to forgive them, feel secure and move on with my life, with some but not all in my life.

People don’t realize how painful it is to be judged and cut off emotionally.  I am not a vindictive person, but don’t you just wish for a moment they could climb into our bodies and understand the horrors we have had to face and with more unknown on the horizon? And not only have we faced these horrors, but many of us have also had to do it alone as the critical support we so craved was not forthcoming. The result is that we faced the incredible challenge of attempting to hold onto our dignity on our own.

So, to lose those who once were so critical in creating that emotional safety net and who were a part of our life is painful. But I also realize, as I think of those I have lost, that I am very lucky to have had them in my life. Even if their presence on earth was shortened, we need to try to focus and bask in the joy that they touched our lives.

May you find peace in this holiday season and find joy in those you miss.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website.

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Thank you for invalidating all of us who need meds taken away by the CDC and DEA.
Tomorrow when I have to spend another day in excruciating pain, I will pop in a Disney movie and sing Hakuna Matata. If only I knew sooner this would keep my joints and tendons from shredding.
THIS ARTICLE makes me want to unsubscribe from this newsletter, it frankly just pi$$ed me off.
People like you are the PROBLEM, not the SOLUTION! If anything this article gave me less will to live. I wish I had the 10 minutes of my life back that it took to read this garbage. I will shut up now before I say things I will regret.
Merry Christmas, maybe you can do some caroling and spread more cheer.

Marna Parker

Thank you Ellen. I lost my father last year, and it’s been extremely hard for me as I realize that those who have truly loved me in my life, before and after my illnesses, are leaving. I’m going to try and remember that I’m am NOT alone. Merry Christmas to you, and New Year wishes for lesser pain days!

Very excellant articulate article. Thank You. God Bless you. I can tell you are a kind thoughtful person.

Guy L. Lyons

Ellen, Thank you for that very well written post about getting through the holidays. I have lived with Juvenile Rheumatoid Arthritis since the age of 10. It was a sequel to Rheumatic Fever. My parents were always supportive and never questioning. They passed away in 2014 and I had the privilege of caring for them the last 5 years of their lives. Not a day passes without knowing that they are still with me and they give me the strength to live on. You’re an inspiration to the millions who live with chronic pain.

Rosalind Rivera

I remember when my family was a true united family. That ended when my grandmother passed away. They everyone went their separate ways.
I have spent many, many lonely and depression filled day due to my chronic depression but also due to my chronic and Intractable agony with pain.
To add insult to injury I have also been left to die a slow death, by my three children. They have all abandoned me and gone on with their lives How much lonelier, depressing and pain filled can a person’s life be as i have no friends and live in total isolation.


Experiencing TORTURE alone is beyond what most people can bear. Pain warriors are the true unsung heroes! Thank you for this write-up! So true!
-Alex (Severe intractable pain and painsomnia from the messed up injured spine - increasingly & progressively cruel - over the past 20 years)

Chaya Miriam

Holidays are hard. I get very lonely and am not often asked out. I think people are afraid to ask. Well how about offering to come visit? That would cheer me up.

I am so very happy your parents are supportive!

Kelly Hudson

God bless you Ellen and may you find more people who are accepting of the monster living inside of us! Merry Christmas and Happy New Year! ❤️🙏🎄


Thank for those helpful words especially at this time of year. My parents are both gone now. My mom was the ONLY one who knew I truly had more than an average headache. But no medical diagnosis growing up. Took me 42 years of life for the true diagnosis of Chiari Malformation. However She Knew when I was feeling really bad/off. I would lay my head in her lap and she would gently rub my head and pray. I can still feel her gentle rubs today many years later and miss both my parents tremendously and especially this time of the year.
Your words are always comforting to me and I appreciate you! (Eventhough I only know you thru your writing,)
God has blessed you with many gifts and 1 of them are the words your write and share. Thank you so much! May God continue to bless you! And you and your family have a Merry Christmas!