This post is a collaboration of sorts. I surveyed hundreds of people both online and off to find the top ten most frustrating things about the holidays with chronic illness. Here they are in order of popularity from least to greatest.
10. Pills, Paraphernalia and Triggers
This one was a tie for tenth place. Some chronic illness sufferers stress about traveling with so many pills and medications (some of which need to be refrigerated). I once had to travel across the country for a week and couldn’t reach my doctor to find out which pills I should take when while away, so I left them all at home. Another time I had a few that had to be kept refrigerated. At the time of this writing, I’m not sure what to do yet about that one.
Some of us struggle with all the paraphernalia we need to take with us to be at our best. Some with food allergies or sensitivities will have to pack snacks we can eat in between meals that are planned around a normal person’s eating schedule. Those with hypoglycemia will understand the need to shove some food in our face in between chatting with a relative over Christmas holiday. Others understand the guilt we feel when we do this. We feel as if we are telling the hostess she isn’t supplying our needs or that we are rude for eating in front of others when they too are waiting for dinner.
Others of us feel stressed over possible reactions to the smells and sounds of the holidays. Those allergic to cats might trigger a sneezing attack while simultaneously producing a migraine that threatens to end the otherwise difficult trip. Some have a trigger in the pine scent or other Christmas fragrances used. Ever try to carry on a pleasant holiday conversation with family while feeling sick from a bad headache or a migraine? Fun times!
9. Can’t Relate
Some with chronic illness have been so affected, and for so long that they tell me they cannot relate to their friends and family at those holiday gatherings. They can’t talk about plans for the future because their future is limited to how they feel that day. Some said they didn’t have anything in common with most because chronic illness had left them without a job or even children to discuss. Most said that they simply had nothing new to talk about other than the fact that they were frustrated about not being able to manage their symptoms. How fun a topic is that at a party? Frankly, many said they didn’t want to discuss that themselves.
8. Having to put up a front that you’re okay
Many chronic illness patients find it difficult to be at a gathering because it took all the energy they could muster just to put up a front that they were okay. Not that their relatives demanded it, but they preferred not to open that “I’m still not feeling good” can of worms.
7. Over-stimulation
Whether it’s stress, big crowds, and noise, or simply the excitement of the holiday events, over-stimulation is quite often the cause of a flare.
6.Tempting food
Those of us struggling with chronic illness are often on a restrictive diet. So many foods these days have preservatives or chemicals or other ingredients that contribute to our inflammation, fatigue or something that adversely affects our bodies. I remember being on a very restrictive Autoimmune Paleo Diet for two years. I felt like I was in prison, though prisoners had it easier than I did. They could have bread and water. I couldn’t have the bread. Not being able to eat grains, gluten, dairy, soy, sugar, etc., etc., etc. I either knew I couldn’t eat what was in front of me or I was unsure what was IN what was in front of me enough to know whether or not I could eat it. This makes you feel guilty for turning down Aunt Martha’s special pumpkin pie dessert with homemade whipped topping, and it also can make you…HUNGRY!
5. Entertaining
Many chronic illness sufferers are women. As such, many of us had often played the hostess for holiday gatherings in our early years BCI: Before Chronic Illness. Many of those I surveyed said that they were saddened at the thought that they could no longer do any of the cooking and hosting themselves.
4. Inability to make firm plans
Most reported feeling guilty or pressured about not being able to make firm plans and/or keep those commitments to attend certain functions. Feeling the need to justify why you were not going to drive an hour to Aunt Mabel’s house or fly out across the country–even though you “wouldn’t be expected to do anything” while there. People like to know if they can count on you so they can make sure they have enough food. We understand that. What you don’t understand is that we’d like to know we can count on our bodies, so we know we have enough energy to take a shower. You’d appreciate that. 😀
3. Traveling
Traveling takes energy. Most people who travel do feel a bit tired afterward. It’s got its own term: jet lag. If you’ve ever had a very long trip, you might understand. Sometimes even young, healthy people who travel a long way by plane or train across several time zones and find themselves sleeping (or trying to) or exhausted for a few days after reaching their destination. That’s what it feels like on a daily basis for those of us with chronic illness, especially during a flare or if we haven’t yet found a way to manage our symptoms. Traveling, even a short car ride, can make some of us feel that way.
I remember driving up to N. California from S. California to visit my husband’s family. It was about a seven-hour drive each way. I was exhausted and spent almost the entire trip in bed coming out only for a meal or two each day.
One of the people I surveyed put it this way, “People’s inability to understand when you say you have had enough & can only attend so many functions & then they pout.” Further, she expressed that sometimes she wanted to stay home and not feel obligated to go anywhere, but that she would have loved the company. Lastly, some said they had to curb local plans because they had to ration their energy…something with which healthy people are not familiar.
2. Energy
Almost all of those I surveyed said that energy was the biggest problem with the Christmas holiday season. Here are a few of the things they said zapped their energy: marathon shopping for gifts, cleaning, cooking, the work involved in clean up and prep if hosting or feeling obligated to help if not hosting, needing a nap in the middle of festivities, but feeling as if that’s rude or would be seen as whining.
1. Justification
The number one most frustrating thing about the holidays with chronic illness was this: the need to justify why you feel bad. Having to explain why you can’t do X or why you didn’t do Y or why “you don’t look sick” and lack of understanding from family. Never knowing how to answer ‘How are you” without sounding like a whiner baby or having to explain things you’d rather not reveal because they are a bit embarrassing.
I remember a holiday dinner at a restaurant when I was just starting perimenopause (on top of my other chronic issues). I was in my late 30s sitting across from a 20-year-old male. Dinner was about two hours and, in that time period, I took my sweater off and put it back on about twenty times. I remember his face as he saw me repeat this action and finally, the question came to his mind, escaped his lips and forced me to admit my female issues not only to a 20 y/o male but the entire table of relatives and all in attendance in the restaurant at the time.
If you are struggling with chronic illness this Christmas holiday, I want you to know that I understand. If you love someone who is suffering from chronic illness, they’d like to know that YOU understand. I pray your Christmas holiday will be stress-free, pain-free, fatigue-free and joyous. Merry Christmas!
Please share your thoughts and experiences below! And please forward the link to this post to share with others. The more the MERRIER! <wink>
