5 Things to Keep in Mind About Your Chronically Ill Loved One During the Holidays

The holidays are a time of the year when stress is abundant. Everyone is bustling around trying to get shopping thrown in, holiday cookies baked and organizing get togethers with friends and family. The holidays can cause stress for the average person, and even more for the chronically ill. Before getting my diagnosis and starting treatment back in 2013 for my own condition, when I saw people in hospital or homeless for the holidays, I always thought there was somewhere for them to go, and other people helping them out. I saw it from my own point of view as a healthier person. I figured if they had a good holiday, maybe it could help them take their mind off their illness and brighten their day.

That is most definitely the case, making sure someone has a great holiday can take their mind off of their illness or disability, but now that I see it from the other side, it works much different than I thought. In my own journey, for three years, every holiday I was bedridden and having family over during this time of the year was something I feared. I am living back with my parents, and each year they have Easter, Thanksgiving and Christmas at their house. Due to my noise and light sensitivity, anyone stopping by and even ringing the door bell was nothing less than torture. Hearing people walking around the house, shutting and opening doors was overstimulating and left my mind spinning. To make matters worse, when I would have to get up and have someone help me to the bathroom there was an audience of people and I felt like I was taking a walk of shame. I was at the lowest point of my life, and so sick I can barely remember any of this. The last thing that I wanted was people around. Eventually my parents relocated all of the gatherings to other family members’ homes, which was equally as hard since I would be here all day alone.

The whole time I was bedridden, I wished there was something online, some Lifetime Original Movie or some advocate for people with disabilities that let other people know it is a lot more complicated when you are sick during this time of the year. Something that could show it from our side. There are many things that come up with someone who is chronically ill or disabled during the holidays and below are a few that I think are worth mentioning.

1. The holidays are a timeline, a reminder of how long they have been sick. It can feel defeating when you are at the same place and time as the year before and not much has changed. For myself I used to set myself goals and when not many of them were completed by the next year, I would get a sense of defeat. In a sense, this was a good thing. It taught me to set more realistic and approachable goals that I could attain over the next year. It is still not an easy situation though. It is a reminder of all that has gone on throughout the span of a year, and sometimes this can be good and others, not.

2. Many people who are chronically ill are on disability or have no income at all. As easy as it is to say that friends and family do not expect gifts because they know your circumstances, it still feels good to make someone else happy. Giving is something feels rewarding, just like receiving a gift does. Seeing someone else light up from something given from the heart, no matter how big or small, is such a gift from life. When someone is too sick to even draw a card or make a gift at home, this can be hard on them.

3. The holidays can be a trigger for many reasons like the two listed above, but it can bring back memories as well. For myself, being back in my hometown was a tough one. I never thought I would be back here and I liked my life exactly where I was. Each holiday reminded me that I was away from my own home, and after the season was over, I was not getting on an airplane to go back to my normal life. I would still be here. It also reminded me that I was very fortunate to have a safe, quiet and clean place to heal.

4. The holidays can also bring around family and friends that you do not see regularly. These are the people who care about you and have many questions. It is difficult for someone with a chronic illness or disability to talk about their condition when it is something they live and breathe every day. Recognizing their illness is one thing, but keeping personal and intense questions limited is respectable. It is great that people care, that they are concerned and want to help and understand your life, so it is important to take that into mind. It is also fine to say “I don’t want to talk about my disease today, maybe we can get together after the holidays and catch up.” People generally understand when you are upfront with them.

5. One of the hardest things is the disruption of routine. Many people are on strict regimens, diets and routines. Having a few days out of that routine can really throw them off. For myself, I take medications nine times a day. They have to be taken away from others, at certain times and my whole day revolves around it. It is not an option to take a day off. The routine part of my life can be exhausting, but rewarding since it is helping me to get my life back. As a young woman, I miss taking the day as it comes and letting go like most people can, but I cannot. My body cannot function on its own and therefore I have to mimic a normal day through a routine of rest, proper sleep and many medications and supplements. This is something most do not see or understand. It is not as easy as throwing back my pills and going along with the day. It is deeper than that. This is one of the things that is hard to explain to others who are not chronically ill, so it is important to let other people know when I am at my limit, unapologetically, so I can stay on track. This took a long time for me to learn, but now that I do, I realize people are more than understanding, and also not mind readers, so it is crucial that I speak up.

This year will be the first Christmas I am able to spend with family in three years. On Thanksgiving I was able to spend the whole day with them and even play a hardcore game of Play-Doh with my nieces. Rekindling those relationships with family is hard. My defense mechanism for a long time was to be quiet and grumpy because it kept people away. It was like a skunk that has stink and a bee that stings. I needed my space, and someone talking to me was hard. The words went so fast and I could not keep up. During that time I wanted others to understand, but I did not have the energy to explain it to them. Hopefully this is something you can share with your own family, or leave some suggestions in the comments below. I wish everyone a happy and safe holiday season and remember, we are all in this together.

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