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, so much, for writing this. It really helped, both in hearing about how you helped and grieved for your mom, and about chronic illness. I'm in the 18th year of illness-driven letting go.
I’m so glad it was helpful - and thank you for sharing how many years you’ve been working at letting go. It’s important for others to know it’s not easy or something that happens overnight. The grieving process takes time.
This is straight from the heart and went straight into mine! Because I am told I "look good" and have spent years as a good actress on playacting normalcy it's very hard for family and friends to acknowledge my new reality of a rapidly worsening condition. Fatigue and pain suck away my desire and ability to do much and I have guilt that I know is misplaced. Combined with the last awful political year it's just overwhelming. I look forward to your posts and wish all of us peace and acceptance in the coming year .
Thank you for the kind words! I’m another excellent actor of “normalcy” and I know the judgement well. You plaster a smile and play through the pain - and they don’t see the crash that comes after so they don’t believe that you’re really suffering.
It’s one of the reasons I started writing - I wanted to peel back the armour I’ve developed over years of chronic illness and allow people a window into our day to day reality. I hope that by showing people the good and the bad that some may become more compassionate and empathetic towards us.
This is exactly what I needed to read today. Xmas is already fraught with hard feelings for me, and this is my first chronically ill xmas, and my first one alone.
I've made a very cozy nest in my bed, I have a tray of decadent cheeses and crackers, another tray of baked goods, and an assortment of other delicious nibbles and drinks. I'm going to take a loooooong bath, do my nails, maybe do some simple crafts, listen to my really good audiobook, have a couple of video calls, and maybe have a visit or two on the front porch.
It's rare for me to have a stretch of time when I'm alone and responsibility-free. I will nap, snack and be gentle with myself.
I love this! It sounds like you’ve found a lot of ways to not only enjoy the holiday but give your body the rest and recovery time it needs. Happy holidays!
Thank you so much for this. Truly. And everything you post, everywhere. My mom, dad, and I all are having a hard Christmas Eve today because of our respective chronic illnesses and problems — I (31, long COVID & other problems) had allergies and asthma that kept me awake and that I over medicated a little to help fix, which I had to then monitor myself for any side effects for for a bit, which all impacted my sleep today; my mom (diabetic, long COVID, arthritic, 60+, neurodivergent like me, a lot of other problems) woke up with really bad pain & is really limited in her movements today, as well as energy; my dad (60+, internalized ableism, neurodivergent like me, untreated sleep apnea, a lot of other problems) did not sleep well last night either, and was up and down all night. We’re just dragging today, and it’s Christmas Eve. We were doing better yesterday too. It sucks. I was able to see one friend from out of town earlier this month and it knocked me on my ass trying to recover my baseline for the rest of it, and I had to skip out on a hopeful other friend from out of town meeting up here because of that 😞 (She’d have come visit herself instead of needing a ride, but she’d come with her family in an rv, so she had no transport of her own, & it was just… not feasible. I know she understands.) I’ve had bad/disabled/sick/injured Christmases before. It doesn’t get easier emotionally, but reading your piece here helped me feel less bad about it all, especially since my mom and I have come down with long covid nearly four years ago. My dad still acts like the people you mentioned who guilt and blame us for our chronic illness. He’s becoming more and more narcissistic the older he gets, and more abusive. Your article here makes me feel less alone, if anything, and I want you to know, from one disabled (unfortunately not living on disability yet either) person to another (who is), thank you. I really hope your Christmas is at the very least relaxing. 🫂💖
I’m sorry to hear you guys are struggling - but I am glad this helped you feel a bit less alone.
I also felt a bit better yesterday and then woke up this morning in a full blown flare. Vomiting, body aches, facial and tongue swelling etc. It’s so crushing especially on a special day like Christmas Eve (thankfully the article was already written)
That’s one of the things I have to work on with respect to “letting go”… I have to remember that more often than not we get absolutely no say in which days are good and which ones are bad. We just have to try our best to roll with it and trust better days will come.
Thank you so much for this heartfelt and compassionate read Kelly! I really needed it so bad, I'm in the process of cutting my mom out AGAIN due to normalized ableism, & it hit me so hard today. Disabled community is the best community, hands down. Being able to talk to actual people who get it is definitely life-changing. 🫶🏻🎄🎁
You’re so welcome! It really is the best community - I don’t know where I would be without the wonderful people I’ve found online.
I’m sorry you’re going through that with your Mom - it’s so hard when we have to cut someone out multiple times. You try and give them another chance only to be hurt … I’ve definitely been there.
Merry Christmas! Lovely read, solidifying the wisdom that there are many ways to be there for people, even without physically being there. All the best in the new year.
Thank you - and I think that’s an important takeaway. We can be there for people in all kinds of ways even without literally “being there”. The people who show up in the virtual space are just as valuable and important - and we should cherish and protect those relationships.
“What non disabled people don’t understand is that we feel tremendous guilt over being unable to participate. We miss our holiday traditions too. But no matter how much we miss them, the reality of what our bodies are capable of doing doesn’t change.”
So true. Even when we can (safely) participate we feel guilt!
Last night I went over to my cousins’ place for dinner which was super nice and everyone did a PlusLife test so that made me much more relieved but while I was there I had a dysautonomia attack (thanks LC!) and got a crazy migraine and felt like I was having the hot flash from hell and wanted to throw up so badly. I had to go stand outside without a jacket for half an hour to try to cool myself down. I came back in but it took 4 hours to fully go away which was such a bummer because I felt like I couldn’t be as present in one of the few (relatively) safe social gatherings I felt comfortable attending this year and I sort of felt like I “missed” it.
I caught myself apologizing over and over. For asking everyone to test, for getting ill, for having to step outside, for asking for ibuprofen and an ice pack. Sigh. I know I don’t need to justify my body or existence but it’s sometimes so exhausting to operate in this society.
First - I'm so glad that they were willing to do a PlusLife for you! I swear if I could grant one Christmas wish/miracle it would be to make those freely available to all who need them. It would be such a game changer to allow people to come out of isolation and be safely included.
I'm sorry about the flareup though. The last Christmas I did in person (in 2019) that happened to me. There was soooo much alcohol (which I'm wildly allergic to) that it triggered my MCAS even though I wasn't drinking. Which in turn triggered my POTS and I spent the night a stranger's spare bedroom with a cat who also didn't like all the noise and hoopla.
I apologized SO much. It was miserable. The guilt is a real tough nut to crack!
Haha thank you! It’s simplistic but it makes me smile whenever I look at it. The coat rack actually belonged to my mom and is an antique - it’s struggling to even stay upright because it has a broken leg.
It’s almost a metaphor for me … it’s dented and struggling but still hanging in there and bringing joy!
Thank you for this message. I've been disabled 3 years now. This is the first year I'm setting boundaries & prioritizing my health over others happiness.
That was really so close. I was devastated when I finally had the financial means to create 'my' version of Christmas ( I love to create, so I wanted to make as much as one could think myself) And couldn't, because of the illness. Luckily I had the best advise givers around me. They flat out said they couldn't do it either because they felt nobody could make those things like I would. And because the making part was the biggest part for me. So they told me how even the thought of me wanting to do these things counted. They helped me to break it down where I could do do one thing per year. They helped where they could. They helped me prevent myself from crossing my own borders. They showed me Christmas is just as wonderful on any day of the year.
And this year I have the blessing of ending the year with so much more friends! All are impaired in so many different ways.
So we have planned several times to join up on zoom-like calls, do online games, have therapeutic communication, watch a movie together ( feature of this zoom-like software)
And the two that are close by, we will join for a drink during the day. And since we all love creating things I was happy to found a new means of crafting none of us knows and we will just try it together.
Christmas is so much more and even if you are in need of cutting back on certain obvious traits, you have the opportunity to find the hidden, precious and meaningful underlying traits.
Where I can see how all these things youbtold about your mon was meant to be about family, joy, together. Seeing your kids decorating the tree was the best gift, instead of the decorations. ( This came from me as a mom, because your act at her last Christmas... I'm still crying. Thank you, from all moms)
Thank you for sharing your story and this lovely comment - you have no idea what a thank you from a Mom means to me. You've given me a wonderful gift this year with your words.
Thank you, so much, for writing this. It really helped, both in hearing about how you helped and grieved for your mom, and about chronic illness. I'm in the 18th year of illness-driven letting go.
I’m so glad it was helpful - and thank you for sharing how many years you’ve been working at letting go. It’s important for others to know it’s not easy or something that happens overnight. The grieving process takes time.
This is straight from the heart and went straight into mine! Because I am told I "look good" and have spent years as a good actress on playacting normalcy it's very hard for family and friends to acknowledge my new reality of a rapidly worsening condition. Fatigue and pain suck away my desire and ability to do much and I have guilt that I know is misplaced. Combined with the last awful political year it's just overwhelming. I look forward to your posts and wish all of us peace and acceptance in the coming year .
Thank you for the kind words! I’m another excellent actor of “normalcy” and I know the judgement well. You plaster a smile and play through the pain - and they don’t see the crash that comes after so they don’t believe that you’re really suffering.
It’s one of the reasons I started writing - I wanted to peel back the armour I’ve developed over years of chronic illness and allow people a window into our day to day reality. I hope that by showing people the good and the bad that some may become more compassionate and empathetic towards us.
This is exactly what I needed to read today. Xmas is already fraught with hard feelings for me, and this is my first chronically ill xmas, and my first one alone.
I've made a very cozy nest in my bed, I have a tray of decadent cheeses and crackers, another tray of baked goods, and an assortment of other delicious nibbles and drinks. I'm going to take a loooooong bath, do my nails, maybe do some simple crafts, listen to my really good audiobook, have a couple of video calls, and maybe have a visit or two on the front porch.
It's rare for me to have a stretch of time when I'm alone and responsibility-free. I will nap, snack and be gentle with myself.
I love this! It sounds like you’ve found a lot of ways to not only enjoy the holiday but give your body the rest and recovery time it needs. Happy holidays!
Love this for you, so much!! 😍
Thank you so much for this. Truly. And everything you post, everywhere. My mom, dad, and I all are having a hard Christmas Eve today because of our respective chronic illnesses and problems — I (31, long COVID & other problems) had allergies and asthma that kept me awake and that I over medicated a little to help fix, which I had to then monitor myself for any side effects for for a bit, which all impacted my sleep today; my mom (diabetic, long COVID, arthritic, 60+, neurodivergent like me, a lot of other problems) woke up with really bad pain & is really limited in her movements today, as well as energy; my dad (60+, internalized ableism, neurodivergent like me, untreated sleep apnea, a lot of other problems) did not sleep well last night either, and was up and down all night. We’re just dragging today, and it’s Christmas Eve. We were doing better yesterday too. It sucks. I was able to see one friend from out of town earlier this month and it knocked me on my ass trying to recover my baseline for the rest of it, and I had to skip out on a hopeful other friend from out of town meeting up here because of that 😞 (She’d have come visit herself instead of needing a ride, but she’d come with her family in an rv, so she had no transport of her own, & it was just… not feasible. I know she understands.) I’ve had bad/disabled/sick/injured Christmases before. It doesn’t get easier emotionally, but reading your piece here helped me feel less bad about it all, especially since my mom and I have come down with long covid nearly four years ago. My dad still acts like the people you mentioned who guilt and blame us for our chronic illness. He’s becoming more and more narcissistic the older he gets, and more abusive. Your article here makes me feel less alone, if anything, and I want you to know, from one disabled (unfortunately not living on disability yet either) person to another (who is), thank you. I really hope your Christmas is at the very least relaxing. 🫂💖
I’m sorry to hear you guys are struggling - but I am glad this helped you feel a bit less alone.
I also felt a bit better yesterday and then woke up this morning in a full blown flare. Vomiting, body aches, facial and tongue swelling etc. It’s so crushing especially on a special day like Christmas Eve (thankfully the article was already written)
That’s one of the things I have to work on with respect to “letting go”… I have to remember that more often than not we get absolutely no say in which days are good and which ones are bad. We just have to try our best to roll with it and trust better days will come.
I hope tomorrow is a better day for all of you 💜
Thank you so much for this heartfelt and compassionate read Kelly! I really needed it so bad, I'm in the process of cutting my mom out AGAIN due to normalized ableism, & it hit me so hard today. Disabled community is the best community, hands down. Being able to talk to actual people who get it is definitely life-changing. 🫶🏻🎄🎁
You’re so welcome! It really is the best community - I don’t know where I would be without the wonderful people I’ve found online.
I’m sorry you’re going through that with your Mom - it’s so hard when we have to cut someone out multiple times. You try and give them another chance only to be hurt … I’ve definitely been there.
Sending you lots of love xx
Merry Christmas! Lovely read, solidifying the wisdom that there are many ways to be there for people, even without physically being there. All the best in the new year.
Thank you - and I think that’s an important takeaway. We can be there for people in all kinds of ways even without literally “being there”. The people who show up in the virtual space are just as valuable and important - and we should cherish and protect those relationships.
Merry Christmas!
“What non disabled people don’t understand is that we feel tremendous guilt over being unable to participate. We miss our holiday traditions too. But no matter how much we miss them, the reality of what our bodies are capable of doing doesn’t change.”
So true. Even when we can (safely) participate we feel guilt!
Last night I went over to my cousins’ place for dinner which was super nice and everyone did a PlusLife test so that made me much more relieved but while I was there I had a dysautonomia attack (thanks LC!) and got a crazy migraine and felt like I was having the hot flash from hell and wanted to throw up so badly. I had to go stand outside without a jacket for half an hour to try to cool myself down. I came back in but it took 4 hours to fully go away which was such a bummer because I felt like I couldn’t be as present in one of the few (relatively) safe social gatherings I felt comfortable attending this year and I sort of felt like I “missed” it.
I caught myself apologizing over and over. For asking everyone to test, for getting ill, for having to step outside, for asking for ibuprofen and an ice pack. Sigh. I know I don’t need to justify my body or existence but it’s sometimes so exhausting to operate in this society.
First - I'm so glad that they were willing to do a PlusLife for you! I swear if I could grant one Christmas wish/miracle it would be to make those freely available to all who need them. It would be such a game changer to allow people to come out of isolation and be safely included.
I'm sorry about the flareup though. The last Christmas I did in person (in 2019) that happened to me. There was soooo much alcohol (which I'm wildly allergic to) that it triggered my MCAS even though I wasn't drinking. Which in turn triggered my POTS and I spent the night a stranger's spare bedroom with a cat who also didn't like all the noise and hoopla.
I apologized SO much. It was miserable. The guilt is a real tough nut to crack!
Hope you're feeling better today.
Thanks 🫂
If I were I had bezos money I’d buy everyone a PlusLife and many tests sigh
Merry Christmas, I love your 'tree' so cool! 💕
Haha thank you! It’s simplistic but it makes me smile whenever I look at it. The coat rack actually belonged to my mom and is an antique - it’s struggling to even stay upright because it has a broken leg.
It’s almost a metaphor for me … it’s dented and struggling but still hanging in there and bringing joy!
Love it! 💖
You are a gifted writer, generous and kind. Many blessings to you! 🕊️🕊️🕊️
Thank you so much - this is very kind. Have a wonderful holiday!
🩷🩵🎄🎵
You’ve given me such a wonderful gift with your words. Thank you, Kelly❣️
I’m here for you and all ears.
Kristine
(Kkranyak on Bluesky)
Thanks for dropping your handle so I could find you - and for the kind words. I really appreciate it 💜
Merry Christmas, and hugs.
Hugs back to you - and Merry Christmas. Thank you for reading!
Merry Christmas DG - Bob
Merry Christmas to you too Bob!
Happy Holidays, Ginger. 🤗🤗🤗🤗🎄
Thank you - happy holidays to you too!
Thank you for this, saved for when I inevitably forget next Christmas! Happy Christmas 🩷
Aww thanks for saving it for another year - I forget a lot too and it's important to have these reminders.
Thank you for this message. I've been disabled 3 years now. This is the first year I'm setting boundaries & prioritizing my health over others happiness.
The Holiday is one of my holiday traditions.
Happy Christmas!
The Holiday is such a classic and one of the few Christmas movies that holds up really well.
I'm so glad to hear that you're setting boundaries and prioritizing your health this year - I hope you have a great holiday.
That was really so close. I was devastated when I finally had the financial means to create 'my' version of Christmas ( I love to create, so I wanted to make as much as one could think myself) And couldn't, because of the illness. Luckily I had the best advise givers around me. They flat out said they couldn't do it either because they felt nobody could make those things like I would. And because the making part was the biggest part for me. So they told me how even the thought of me wanting to do these things counted. They helped me to break it down where I could do do one thing per year. They helped where they could. They helped me prevent myself from crossing my own borders. They showed me Christmas is just as wonderful on any day of the year.
And this year I have the blessing of ending the year with so much more friends! All are impaired in so many different ways.
So we have planned several times to join up on zoom-like calls, do online games, have therapeutic communication, watch a movie together ( feature of this zoom-like software)
And the two that are close by, we will join for a drink during the day. And since we all love creating things I was happy to found a new means of crafting none of us knows and we will just try it together.
Christmas is so much more and even if you are in need of cutting back on certain obvious traits, you have the opportunity to find the hidden, precious and meaningful underlying traits.
Where I can see how all these things youbtold about your mon was meant to be about family, joy, together. Seeing your kids decorating the tree was the best gift, instead of the decorations. ( This came from me as a mom, because your act at her last Christmas... I'm still crying. Thank you, from all moms)
Merry Christmas 🎄
Thank you for sharing your story and this lovely comment - you have no idea what a thank you from a Mom means to me. You've given me a wonderful gift this year with your words.
merry Christmas!