Chronically Ill Patients Deserve a Holiday Too.
Ways you can celebrate with chronic illness:
-Rest!
-Let family help
-Decorate your space
-Take time off (responsibly)
-Talk to loved ones
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Who this applies to:
This advice is especially aimed at those with severe ME who are housebound and/or bedbound. However, this advice can also be helpful for people who have more functionality but want to spend the holidays actually resting as opposed to pushing themselves in order to celebrate. Both are valid choices and know that you don't have to celebrate any way besides the way that you find rewarding. You deserve a holiday, so make sure you take some time for yourself and don't give it all away trying to live up to a healthy person's way of celebrating.
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Rest!
First off remember that holidays are meant to be a vacation from work. While chronic illness is a job that never stops that doesn't mean you can't take time to rest. Deprioritize any appointments that can wait (lots of offices will be closed anyway) and take time to rest. Put on a festive movie or look back on previous holidays. Sometimes the actual day of a holiday can be sad or stressful to miss out on and sleeping through it can be an easy way to get through. A date is just a number on a calendar, rest when your body tells you and you can celebrate whenever you have the energy.
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Let family help!
If you are lucky enough to have a nice and supportive family let their presence around the holidays be a help. Having home-cooked meals and care from parents or children can be incredibly comforting and help offset the stress of having more people around. Don't be afraid to ask for what you need, if your family chooses to spend the holidays with you they want you to be there and you can only do that if you have the support to be present.
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Decorate your space
If you have the energy or help spend some of it on putting up lights, trees or wreaths, and so on. When we are bedbound we spend most of every day looking at the same room and the same view. Changing it up for the holidays is a great way to feel festive even while you are taking care of yourself and resting. Not to mention putting up decorations is a fun activity to get your loved ones in the room and give them a concrete way to share the holiday spirit with you.
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Take time off (responsibly)
Pacing, heart rate monitoring, symptom tracking, etc. All of these interventions help us but can also be tedious and exhausting. Taking time off on days when you prioritize rest and holiday spirit can be a great way to get the vacation everyone else does. I wouldn't recommend dropping the monitors on the big day, especially if you plan on seeing friends or family, but taking some time off responsibly around the holidays is a well-needed break you deserve. Other forms of this include taking a break from (non-allergy) dietary restrictions for a holiday meal or simplifying your supplement routine temporarily.
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Talk to loved ones
This is the one energy expenditure I would prioritize. If you have the ability to talk (or text) focus it on catching up with friends or family during this time. They will already be more focused on caring conversation than usual and it is a great time to have those real heart-to-heart conversations that build empathy for our situations. This is also the thing your loved ones want most and will be most disappointed to miss out on. Make sure you alternate this with rest and deprioritize physically visiting people if it allows you more energy to emotionally connect.
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On difficult family
Much of this advice applies mostly to people with family and loved ones who care for them and will listen to their health needs. If your family doesn't that puts you in a hard position and whatever you choose to do about it deserves respect. However, do consider deprioritizing physically being present for people who do not respect your bodily needs and/or autonomy. Phone calls with the family that does support you may be better than seeing people who only invalidate you.
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On lack of support
Of course, there are also those who do not have loved ones to celebrate with. This is unfortunately common in severe ME where so many community members are cast away when they cannot meet ableist expectations. For these people, I am sorry for your losses and hope you are able to find holiday spirit in rest and in a virtual experience. Remember, there is no wrong way to celebrate and however, you choose to get through the holidays you deserve a break -- and even if you don't receive it you are still so worthy of love and support.
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The holidays can be hard for everyone with chronic illness but especially those with severe ME or bedbound and housebound patients.
Just because your chronic illness doesn't take a #holiday doesn't mean you can't have one. You deserve a break, a rest, and to connect with loved ones. That is what the holidays are about. If you let go of the expectations for fancy meals, parties, and traditions you may find that the holiday essentials of taking time off and connecting with loved ones are more achievable than you thought.
Remember the spirit of traditions and holidays matters more than the execution. For me and my family that means putting more emphasis on the celebration than the date. For example, we celebrated our Hannukkah Latkes tonight a day late and are still looking for a good day to do Thanksgiving a month late. Whether Christmas happens on the 25th will be completely up to how I am doing on the day. But in a year no one will remember whether we celebrated on time. We will remember whether I was there and awake.
Similarly, the focus on physical presence can be more flexible than we think. Talking to relatives and sharing holiday spirit matters way more than getting everyone in a specific place in a specific time. This makes the holidays so much more accessible especially to those of us who are housebound or bedbound.
Finally, I know I am so privileged to have such a loving and accomodating family. My heart goes out these holidays to everyone who cannot follow much of these recommendations because of an ableist or unaccommodating family. Sometimes we make sacrifices for family, and that is okay. But don't feel pressured to have to follow an unaccommodating holiday plan just because it's what your family expects. You deserve a holiday and a vacation too, not just to sacrifice for someone else's.
