A Chronic Illness Christmas

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.

Christmas was always my favourite holiday. Growing up my Mom adored Christmas - and her joy for the season was infectious. We had many traditions to look forward to each year - like decorating the tree with ornaments that we received on Christmas Eve, getting new holiday pajamas, stockings that had our names on them and were filled with ‘Santa Gifts’ and presents from Mom and Dad under the tree.

We would watch holiday movies together - and Christmas songs were all that played in our household from December 1st onward. I looked forward to decorating the Christmas tree the way a kid looks forward to going to a candy shop. We would haul out the boxes of ornaments from the basement and reminisce about the meaning behind each one. We would sing songs together and have hot chocolate. We would eagerly anticipate the first gifts being put under the tree and start frantically guessing at what they could be.

When I was 18 - my Mom was diagnosed with pancreatic cancer. She went in for an attempted whipple in December - a surgery that was her only shot at survival. It was unsuccessful and she received a terminal diagnosis. She was given between 3-12 months to live and had to remain in hospital until two days before Christmas. When she arrived home she was still sick and in pain - and we had to grapple with the reality that this would likely be her last holiday season.

In a way - that was my first chronic illness Christmas. Only it wasn’t me who was chronically ill.

Image Description: A photo of the Rockefeller Tree in NYC at night.

My Mom had always been the one to spearhead our traditions - and that year she was barely able to get out of bed. She certainly couldn’t go out and buy and wrap presents or decorate our Christmas tree.

That was the year I became an adult. I was already 18, but had lived a relatively sheltered life up until that point. Watching my Mom suffer and knowing that she was upset to miss out on the Christmas traditions broke me emotionally. It was so unfair. Why was this happening to us? Why was she so sick on her last Christmas?

I didn’t have any of the answers - just like I can’t answer why I’m so sick now. What I could do was attempt to bring her as much joy as possible. I could embrace the traditions that meant so much to her and find a way to make them accessible.

I spent every penny I had saved over years of part time jobs on Christmas presents. I made sure we each had a special ornament to open on Christmas Eve and new pajamas. I hid presents in my car and brought them inside in the middle of the night so no one would know what I was doing.

I played Santa and ‘Mom’ that year - and on Christmas morning I made sure our tree and stockings were as full as they had been in the past. I got up early to put Christmas music on and eagerly waited for everyone else to wake up. I even went grocery shopping to make sure we had our regular snacks and holiday drinks.

I was exhausted - but seeing the joy on my Mom’s face Christmas morning was worth it. We had a beautiful last Christmas together, and later that night she told me that for a brief moment she actually wondered if maybe ‘Santa was real.’ Losing her was one of the most painful experiences in my life, but the memory of our last Christmas and the joy I was able to bring her has brought me tremendous comfort.

Holding Onto Holiday Traditions

In the years after her passing - I tried to hold on to the various traditions I had grown up with. I kept buying myself and my younger sister our annual holiday ornaments, I made sure I always put up my tree on December 1st and I would eat all the same snacks that had become Christmas staples in our home.

It was my little way of honouring the memory of my Mom and finding joy during the holidays without her.

I would even go to the mall where she used to take us to see Santa as children - and walk around listening to the Christmas music and enjoying being in a place that reminded me of her.

Photo by Debby Hudson on Unsplash

Image Description: A photo of a holiday wreath with a string of cut out letters spelling ‘MERRY’

As I got sicker - this became harder to do. My financial situation was strained, my physical health worsened, and suddenly keeping up traditions was nearly impossible.

One by one they fell away. I could no longer go walk around the mall. I became allergic to all of the holiday goodies I used to enjoy. I couldn’t afford a Christmas tree so there was little sense in continuing to buy ornaments. I was often alone at the holidays with no gifts to open - and I couldn’t afford to buy presents for others. I spent more than one Christmas in the hospital - which is not the most joyful way to spend a holiday. They became a bleak and lonely time.

Chronic Illness, Holiday Guilt and Gaslighting

I realized that if I was going to be sick at the holidays, if I was destined to spend most of my Christmases alone and/or in the hospital, I would need to develop my own unique ways of finding joy. I would need to accept that Christmas would look much different going forward.

It was not an easy thing to do. Holidays are one of the hardest times to be chronically ill because there’s intense pressure to socialize and participate in various family and friend events.

For many of us, forcing ourselves to participate for the benefit of others leaves us exhausted and can impact our baseline. It robs us of our ability to enjoy the holidays. Unfortunately most non disabled people are unable to understand this and will push us to be involved in every holiday event and tradition.

Have you ever tried to say ‘No’ only to have people scoff and ask you if you don’t care about them and/or Christmas? Or tell you that you just need to ‘try a bit harder’ to get involved? We’ve all been there - and it’s incredibly painful.

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.

I missed spending Christmas with family - but that didn’t mean the hospital was going to discharge me and let me drive home after a medical emergency. I missed going out with friends and partying at the holidays - but that didn’t mean I was suddenly going to overcome my severe allergy to alcohol. I missed having a Christmas tree - but that didn’t mean a money tree grew in my backyard to help me afford Christmas decorations while trying to survive on disability.

We miss our old lives just as much as you do - in fact we miss them more. We know you’re unhappy we can’t do what we used to do - but no amount of wishing things were different will change our reality and we need you to help us accept and adapt. We need you to meet us where we’re at and provide love and support - especially at the holidays.

Almost every holiday after becoming sick was marred with guilt and self gaslighting. I dreaded December because I knew I would be faced with invitations that I would have to decline. I was embarrassed I couldn’t afford gifts for people and sad that my health meant I would need to spend Christmas alone. The guilt was always the hardest part.

Overcoming Guilt and Setting Holiday Boundaries

First things first - the holiday season can be exhausting even for the non disabled. Travel, visiting with countless people, frantic shopping, cooking and cleaning up after big meals, house guests etc. By the time it’s all said and done most people simply want a long Christmas nap!

If you’re dealing with chronic illness - this fatigue will be magnified tenfold. It’s not reasonable to expect your body to keep up with others during the holidays - and anyone who tells you otherwise doesn’t understand the realities of living with an energy limiting condition.

People who love you should want to find accessible ways to include you. They should be more than happy to listen to your feedback and tweak celebrations so that you can join in a safe and healthy manner.

If they’re unwilling to do this - if they gaslight and guilt you because they want it to be exactly like the holidays before you got sick - you are under no obligation to see them.

No one is going to protect your baseline the way you will. No one else has to live with the consequences of a setback. No one knows how it feels to be inside your body, coping with constant pain and fatigue. So no one has the right to tell you what you can and can’t do.

What often happens is that family and friends are upset that their holidays are going to look different. That they’re going to have a reminder of chronic illness and disability. They see this as impacting their joy.

This has only intensified since the beginning of the Covid pandemic - because now more than ever people do not want any reminders of the frailty of the human condition or the randomness of life. They don’t want to think that they too could be left disabled.

So they expect you to hide your sickness. They expect you to ‘perform’ the same way you did before you became ill. They want the ‘old you’ because the ‘new you’ challenges their carefully crafted bubble of denial.

This is not your problem.

It can be hard to move past the guilt and the gaslighting - but for the sake of your health it’s something you need to try and do. Please read this again and again as much as you need to:

“The people who can’t accept your chronic illness, who can’t accept the fact that you’re disabled, have a problem with internalized ableism. They will undoubtedly try to make their problem your problem by expecting you to pretend to be well. You do not have to do this for them. It is NOT your problem. You are just as worthy of joy and happiness at the holidays as everyone else and you do not have to stand for anyone insinuating your health is impacting THEIR joy.”

If you’re struggling to set boundaries - ask yourself the following question: “Will this person be there for me if I get worse? Have they been there for me in the past?” The answer will often be ‘No’ and that realization makes it much easier to stand firm in your choices and hold your boundaries.

Lastly - don’t be hard on yourself if you give in to the guilt. Especially during your first chronically ill Christmas. The pressure from others to pretend away one’s illness is intense - and boundary setting is a difficult skill. It takes time to learn how to do it.

Give yourself grace and know that whatever you’re doing is more than good enough. You’re coping with something incredibly difficult that few people outside of the disability community can ever understand. If you make a choice that sets you back - it’s ok. Forgive yourself, reach out for support and next time you might be able to choose differently.

If you have a chronically ill person in your life who seems hesitant about joining in on the holiday celebrations - please remember that it’s not because they don’t want to see you. They’re not being lazy, antisocial or a ‘Scrooge.’ They’re scared that they will get sicker. They’re exhausted and for many of us the holidays represent a rare opportunity to catch up on rest and quiet that we struggle to get all year. We can’t always participate the way you want but it doesn’t mean we love you any less. It’s genuinely not about you.

Establishing New Traditions

We’ve dealt with the guilt and the gaslighting that can come with being chronically ill at Christmas - what comes next? Often you will find yourself spending a holiday alone or having a much quieter Christmas than what you were used to in the before times.

You may have to let traditions go because you can no longer safely do them.

This letting go process can be painful - we often underestimate how much these traditions meant to us. But the letting go can provide a unique opportunity to create new traditions. To find ways of enjoying the holiday as a disabled person. To experience rest and relaxation instead of chaos and consumerism.

The easiest way to do this is to meet yourself where you’re at. When my illnesses were more moderate - these were some of the things I would do:

• “Christmas at theMovies”. My friends and I who couldn’t travel to see family would go see a movie on Christmas Day

• Christmas Playlists. I compiled playlists of all my favourite tunes and played them starting December 1st… I ‘wham’ myself every year and I always love it

• If you can’t get a real tree because of the physicality needed to lug it in and out of your home (not to mention cleaning up pine needles) you can get a fake tree and/or a small table top tree

• Watch Christmas movies. I have a whole list of movies and I always end with my Mom’s favourite as a way of honouring her memory (National Lampoon’s Christmas Vacation)

• Give back where you can. This is a big one. Being of service to others helps us be more grateful for what we have. It can be one of the easiest ways to inject some joy into your life. When I was in a more secure financial position I would donate to local food banks, give gifts to the children’s hospital and surprise friends and coworkers with thoughtful cards

When I became more severe I lost a lot of these traditions. I can no longer leave my home and I’m stuck in bed most of the time. I’m not in the financial position to help people or give gifts the way I used to. I have to try and find joy and traditions in the smallest of things now:

• There’s a homeless person who lives in a tent across the street from my building. I can’t get outside to talk to him or help him - but I see him every night when I’m laying in my warm bed. I send him hot meals via Uber… it’s not much… but it’s what I can do

• I have a Charlie Brown Christmas tree… it’s just a coatrack wrapped in Christmas lights. It’s not much but it brings me joy. I placed it beside my tv so I can enjoy the lights while I watch Christmas movies

• Leverage technology. Since I can’t celebrate with people in person - I make it a point to set up as many Zoom calls as I can and I join in the celebrations that way

• Connect with people on social media. Many of those who are severely ill will spend their holidays alone. That doesn’t mean they have to be lonely. Social media gives us a way to be ‘alone together’… and I cherish the conversations I have with others at the holidays

Image Description: Kelly’s Charlie Brown Christmas Tree is a wooden coat rack with Christmas lights wrapped around it. You can see a tv in the background with ‘The Family Stone’ playing.

What Can You Do for the Chronically Ill Person in Your Life?

We’ve gone over the various ways to make the holidays easier if living with chronic illness - but what about if someone you love is disabled and you want to learn how to better support them? I’ve got you covered - there are many things you can do to make our holiday season a bit brighter:

• Keep things guilt free. Make sure they know they’re welcome but that if they can’t make it or have to leave early you will understand

• Relieve them of financial obligations to bring presents. Unless they’re one of the few chronically ill people able to work and/or fortunate enough to live above the poverty line - odds are good they are declining invitations due to financial stress. Let them know their company is enough

• Let them know they can “come as they are.” My illnesses cause a lot of pain and swelling - tight clothing is uncomfortable. I declined many an invitation because it was fancy dress and I can’t be comfortable in anything but sweat pants

• If they have dietary restrictions - respect them and find a way to include them. Before my illnesses became severe I was a vegan and often would be left with a plain baked potato or squash at holiday dinners. People couldn’t/wouldn’t avoid using dairy which eliminated most side dishes - and I didn’t eat turkey. I was often teased for this which made me less likely to want to attend

• One of the best Christmas dinners I ever had was at the home of a friend from the theatre who not only made a separate vegan meal for me - they ensured it had adequate protein (not always an easy thing to do!). They made it clear to the guests that I was not to be teased for my choices - and many people ended up trying the vegan dish

• Many chronically ill people can’t drink alcohol. Whether that’s because they have MCAS and are allergic (like me!) or other reasons - don’t demand to know why. Don’t ask if they’re pregnant or tease them for being sober. If possible, have a fun virgin cocktail they can drink so that they don’t feel left out

• If giving gifts, consider whether or not they’re practical. We aren’t being ungrateful - but many of us can’t use a lot of the traditional gifts people give. I would often get products I was allergic to, gift cards for food or booze I wasn’t able to eat or clothing I would never be able to wear. I can’t speak for all chronically ill people - but a gift card for groceries or pharmacies and/or practical supplies like first aid or household goods would have meant the world to me. When you’re on a fixed income you often spend more than you have on stuff that isn’t fun to buy (like toilet paper, medications, gas etc). When someone gifts you these items it frees up your budget to be able to do something we’re almost never able to do …. Treat ourselves.

Final Thoughts for Anyone Struggling this Holiday Season

Remember that you’re not alone. If you’re feeling lonely or spending the holidays alone - I want to assure you there are many of us out there in the same boat. I like to think that we are ‘alone together.’

Reach out on social media, leave comments on this post, text or call a friend. Any way that you can connect to someone else can help remind you that even if you’re on your own - you’re never alone.

The longer you deal with chronic illness and disability - the more people will disappear from your life. I desperately wish this wasn’t true - but after years of being sick I’ve seen it time and time again. People leave you behind. They have their own timeline for you to ‘get better’… when you don’t … many leave.

With each Christmas that’s passed since I became severe, I find myself receiving less holiday cards, texts, calls and emails. I’m painfully aware that most people have forgotten me. Erased me from their lives because they don’t want to face the realities of living with severe chronic illness. They think people like me impede their ‘joy’ - so they disappear.

I know how painful it is but never forget that you are valued and loved just as you are. We deserve better than those who will judge us or cast us aside just for being sick. They don’t realize how easily they could end up in the exact same situation - and if/when that happens we will be there for them the way they weren’t there for us.

I will leave you with a line from one of my favourite Christmas movies - The Holiday. If you haven’t seen it I highly recommend it for no other reason than it encourages us all to have ‘gumption’.

Now more than ever we need to stand strong in our convictions, hold our boundaries and push back against those who fail to treat us with the respect we both need and deserve. That is gumption - and my wish for all of us in 2025 is that we find it wherever and whenever we can and start changing the world for the better.

“I don't know, but I think what I've got is something slightly resembling... GUMPTION”

Image Description: A photo of Kate Winslet in The Holiday with white text that reads “I don't know, but I think what I've got is something slightly resembling... GUMPTION”

Happy Holidays from my heart to yours - and thank you to everyone who’s taken the time to subscribe, like, comment and support me through this wild journey to get The Disabled Ginger out into the world. It’s hard to believe it’s only been half a year since it launched - and I’m excited to see what 2025 has in store.

Are you having a difficult holiday season? Is it your first one since becoming chronically ill or have you done this before? Where are you finding joy and what things are you struggling with? Leave a comment and let’s keep each other company on our Chronic Illness Christmas.