When you're chronically ill, the holidays can be lonely. Feelings of guilt are common. A look at how to set boundaries, support other disabled people and a reminder that you're never alone.
Thank you for this. I really needed to read this right now. I’m in my room feeling terrible while festive stuff is happening just in the other room. I’m in too much pain to even sit in a regular chair and I can’t eat any of the food that’s been prepared. So, not actually alone in the house, but very lonely. And my mental health has really tanked as well. Sending out love to everyone who also feels unwell and alone. 💗
I'm so sorry Alex. It's so hard to experience that loneliness and isolation when there's other people around. A very common experience for those of us with chronic illness. I hope today is a little bit better for you.
You have a beautiful soul and you have a gift of sharing. I'm depressed because when I told my mother I was diagnosed terminal her reply was, "Good, more for your brother."
Your words made me excuse her and focus on happier times.
I am so sorry you had to hear such a callous response from family. Please know you're not alone... many of us have sadly heard similar. I'm glad I was able to help you focus on happier times!
Im so glad to read your compassionate post. You help me realize many things I never thought about. I'll be a little more understanding of others and a lot more understanding of myself. Thank you. Love your post! I wish you a Merry Christmas.
Since becoming disabled with Long Covid in 2020, I’ve had five holiday seasons to try to navigate. Depending on the year (ie, how flared I am), I either make just one easy recipe instead of the entire feast…or order takeout! I send Jacquie Lawson ecards (charming English illustrations) instead of buying, writing, stamping, addressing, and mailing paper cards. No more big cut trees, instead I bought a tabletop tree with lights, but some years, like this one, I just have a big bowl filled with ornaments (walking out to the storage shed and hauling in boxes is just too much). I buy the few presents I’m giving online…shopping in person is out of the question. I “wrap” presents by putting them in holiday gift bags with tissue sticking out the top. EVERYTHING is about “less is better.” And I do the same as you, Kelly, Christmas movies and music. And oh my goodness, I read sooo many books to escape!
"Less is better" is such a good motto when living with chronic illness! I used to have a small tabletop tree but even that has fallen by the wayside in recent years... and I just remind myself that it's ok. My writing and advocacy is the most important thing to me and my energy must be conserved for that!
priorities and pacing—my heart is with you Adrienne and Broadway Ginger. your creative writing and strategy sharing matters snd I neex this kind of community exchange with women who are supportive in a read-able way. sounds clunky but I am clunky.
Hi, Kelly - it's a hospital Christmas for me this year. My son is visiting tomorrow, so my sister is coming on Saturday. They understand - I'm very lucky.
Gentle hugs Kelly. This piece is timeless. I'm so sorry you're so beset this holiday but what a beautiful gift you gave your mom for her last Christmas. I teared up reading that. xo
To everyone else stuck in bed - remember, you matter. And your needs and life matter. Even if no one else tells you so. Please gift yourself some kindness and self-love. xo
Thank you so much Jan! I cherish and remember that Christmas every year. I may be spending Christmas alone but at least I got to have that wonderful holiday with her and I hope she would be proud of me trying to carry on her legacy and traditions wherever I can.
A great reminder, Kelly! I used to deliver groceries as a teen in an upscale area of Toronto and since women outlived men even back then, I delivered to many older lonely women! So I rotated my time with them so I could spend a little time with them each week! Not only did they enjoy it alot, I found myself happier inside, which I believe now is because we are meant to Love and teach others to Love!
Well said, thank you from the deepest part of my soul for your kind words, wonderful ideas and helping me and many others not feel alone and forgotten. You are loved and appreciated from northern Minnesota, and I send you a virtual, and very safe distance Christmas hug 🫂🎄
My heart goes out to you. I too have struggled with chronic pain and depression. The pain has subsided but the depression continues and I am ok with it. I don’t even expect others to understand as I had friends in my past who never experienced what I experienced. And after trying to explain what it was like for me…I have given that up…unless a person has had some experience with disability they can’t know what it’s like. I see that. It’s ok being alone and I feel different after I get passed Thanksgiving and New Year…like a bolder has been lifted off me.
Best of health and peace to you…embrace any enjoy.
Thank you for sharing Ruth. I sadly agree that until someone experiences it they really can't 'get it'... and sometimes it just takes too much energy trying to help them understand.
Part of my advocacy has always been an attempt to get others to understand, and I genuinely hope I'm reaching people... but at the same time I would rather be alone than surrounded with those who don't take my illness seriously or will push me to do things that hurt me.
That's my wish for all of us... remember it's ok to set and hold boundaries. It's ok to put yourself first.
From one "spoonie" to another who is also experiencing another acute injury-on-chronic exacerbation of multiple, severe syndromes & disorders, Happy (as possible) Holidays with love, gentle hugs, and much appreciation for your superb contributions! 🌲🫂💙💥
Thank you Linda! Sorry to hear about your acute injury..it's always so hard when there's something 'extra' on top of the stuff we already deal with on a regular basis. Sending spoons and healing vibes your way.
Thank you for this. I really needed to read this right now. I’m in my room feeling terrible while festive stuff is happening just in the other room. I’m in too much pain to even sit in a regular chair and I can’t eat any of the food that’s been prepared. So, not actually alone in the house, but very lonely. And my mental health has really tanked as well. Sending out love to everyone who also feels unwell and alone. 💗
I'm so sorry Alex. It's so hard to experience that loneliness and isolation when there's other people around. A very common experience for those of us with chronic illness. I hope today is a little bit better for you.
Thank you, Kelly. Really hit home, tearing up a bit here. No energy to write more but just wanted to say I’m so grateful you shared this.
You're so welcome Joanna. Thank you for spending some of your precious energy to leave me this comment. It means so much to me.
You have a beautiful soul and you have a gift of sharing. I'm depressed because when I told my mother I was diagnosed terminal her reply was, "Good, more for your brother."
Your words made me excuse her and focus on happier times.
I am saving your story.
I am so sorry you had to hear such a callous response from family. Please know you're not alone... many of us have sadly heard similar. I'm glad I was able to help you focus on happier times!
Im so glad to read your compassionate post. You help me realize many things I never thought about. I'll be a little more understanding of others and a lot more understanding of myself. Thank you. Love your post! I wish you a Merry Christmas.
Thank you Joan! I wish you a Merry Christmas as well!
I'd like to swap who's terminal and who's not in your family, frankly. Seems more deserving.
Please enjoy the last of your time here as much as you can. If I knew you IRL, we could do very low-key things together. Hugs.
Since becoming disabled with Long Covid in 2020, I’ve had five holiday seasons to try to navigate. Depending on the year (ie, how flared I am), I either make just one easy recipe instead of the entire feast…or order takeout! I send Jacquie Lawson ecards (charming English illustrations) instead of buying, writing, stamping, addressing, and mailing paper cards. No more big cut trees, instead I bought a tabletop tree with lights, but some years, like this one, I just have a big bowl filled with ornaments (walking out to the storage shed and hauling in boxes is just too much). I buy the few presents I’m giving online…shopping in person is out of the question. I “wrap” presents by putting them in holiday gift bags with tissue sticking out the top. EVERYTHING is about “less is better.” And I do the same as you, Kelly, Christmas movies and music. And oh my goodness, I read sooo many books to escape!
"Less is better" is such a good motto when living with chronic illness! I used to have a small tabletop tree but even that has fallen by the wayside in recent years... and I just remind myself that it's ok. My writing and advocacy is the most important thing to me and my energy must be conserved for that!
It’s all about priorities and pacing, isn’t it?
Well, and resting, supplements, medications, virtual medical appointments, more resting, and whatever foods are on today’s “yes” list ❤️
priorities and pacing—my heart is with you Adrienne and Broadway Ginger. your creative writing and strategy sharing matters snd I neex this kind of community exchange with women who are supportive in a read-able way. sounds clunky but I am clunky.
Hi, Kelly - it's a hospital Christmas for me this year. My son is visiting tomorrow, so my sister is coming on Saturday. They understand - I'm very lucky.
Hi Heather, I'm so sorry you're in the hospital but I'm so glad you've got loving family who understand and will come visit you!
I hope you get to go home soon and that you've had kind and compassionate healthcare workers today.
Actually, it's been surprisingly pleasant - I feel very lucky!
Thank you for being so honest about what we go through on holidays.
You're so welcome Lori. I can only hope the people who need to better understand actually take the time to read it.
Hope your doing better.
Gentle hugs Kelly. This piece is timeless. I'm so sorry you're so beset this holiday but what a beautiful gift you gave your mom for her last Christmas. I teared up reading that. xo
To everyone else stuck in bed - remember, you matter. And your needs and life matter. Even if no one else tells you so. Please gift yourself some kindness and self-love. xo
Thank you so much Jan! I cherish and remember that Christmas every year. I may be spending Christmas alone but at least I got to have that wonderful holiday with her and I hope she would be proud of me trying to carry on her legacy and traditions wherever I can.
I'm quite sure she would be/is!
As always, I remain, your friend, wishing you the best under difficult circumstances, Bob
Thank you Bob!
A great reminder, Kelly! I used to deliver groceries as a teen in an upscale area of Toronto and since women outlived men even back then, I delivered to many older lonely women! So I rotated my time with them so I could spend a little time with them each week! Not only did they enjoy it alot, I found myself happier inside, which I believe now is because we are meant to Love and teach others to Love!
I love this! That's such a lovely thing you did and I'm glad to hear it benefited them and you. Thank you for sharing.
Why thank you! Merry Christmas to you and your gorgeous red hair!!😇
Well said, thank you from the deepest part of my soul for your kind words, wonderful ideas and helping me and many others not feel alone and forgotten. You are loved and appreciated from northern Minnesota, and I send you a virtual, and very safe distance Christmas hug 🫂🎄
Thank you very much! Sending a safe and gentle hug back to you.
My heart goes out to you. I too have struggled with chronic pain and depression. The pain has subsided but the depression continues and I am ok with it. I don’t even expect others to understand as I had friends in my past who never experienced what I experienced. And after trying to explain what it was like for me…I have given that up…unless a person has had some experience with disability they can’t know what it’s like. I see that. It’s ok being alone and I feel different after I get passed Thanksgiving and New Year…like a bolder has been lifted off me.
Best of health and peace to you…embrace any enjoy.
💟
Thank you for sharing Ruth. I sadly agree that until someone experiences it they really can't 'get it'... and sometimes it just takes too much energy trying to help them understand.
Part of my advocacy has always been an attempt to get others to understand, and I genuinely hope I'm reaching people... but at the same time I would rather be alone than surrounded with those who don't take my illness seriously or will push me to do things that hurt me.
That's my wish for all of us... remember it's ok to set and hold boundaries. It's ok to put yourself first.
Just sending lots of gentle hugs and love for a beautiful Christmas for you 🎄💜
Thank you Kathryn! I hope you're having a good day!
Thank you. I needed to read this. 🙏🏻
You're welcome!
Dear Kelly,
Know that you are in my heart. Merry Christmas and lots of hope and love to you in the New Year. xxoo
Thank you! Merry Christmas to you too!
Dear Kelly,
From one "spoonie" to another who is also experiencing another acute injury-on-chronic exacerbation of multiple, severe syndromes & disorders, Happy (as possible) Holidays with love, gentle hugs, and much appreciation for your superb contributions! 🌲🫂💙💥
Thank you Linda! Sorry to hear about your acute injury..it's always so hard when there's something 'extra' on top of the stuff we already deal with on a regular basis. Sending spoons and healing vibes your way.
Thanks for sharing…
Thank you for reading Lloyd!