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>
I am printing this out and putting it in my Christmas cards to Matt’s family….who just doesn’t get why I can’t come 6 hours and be festive. My mom totally understands my situation. Matt’s family doesn’t. They are shunning us for not coming the 6 hours to Thanksgiving. Thank heavens for sisters in the faith online or I would be in a deep pit of depression all the time. Thanks for this post JoJo. Love you – Kelly Thompson
You are very welcome. This was something on my heart to share for a while now. I was glad to be able to obtain the thoughts and feelings of many who struggle with this before I put it together.
Thank you! I’ve been dealing with my chronic pain for “only” 7 years, but it is SO hard. I don’t get to go back home (1200 miles away) very often anyway due to finances, but when I do, I hate having to try to explain to my siblings why I cannot schedule every waking minute I’m in town. Then my in-laws, who are local to us, can’t or won’t make any accommodations, so I feel either left out, or I push myself too far and deal with the consequences for months afterward. I did the turkey (only the turkey) this Thanksgiving, and I’m still paying for it. It’s so nice to know there are others out there that understand this frustrating helplessness and embarrassing misery! I really appreciate your words, Jo-Jo, and I’m saving them! 🙂
Thank you for validating our feelings! One of the things that I deal with is others trying to make my pain feel less than theirs or someone with cancer or some other illness that has a name and is well known. I tell people that we all have different pain and pain affects everyone differently. So just because your pain feels “like the worse thing ever” to you, it doesn’t mean that my pain isn’t just as bad to me. One way I try to explain how I feel is by comparing my “good” days to their “bad” days. Most people can remember days that they have felt their worse (like the flu or something). Well, I can remember days that I wake up feeling well enough to do all the things I would like and still be stadning at the end of the day!
Excellent point, Stormy! Illnesses that are well known are understood and, while frightening and also painful, they are at least supported by those around them. Every illness/disease/condition is better handled if the person is supported and understood. Thanks so much for sharing your experiences.
You are welcome, Jennifer. This topic has been on my heart for a long time. I pray it fosters understanding among those with loved ones dealing with chronic illness and also support for those who are dealing with it themselves. Thanks for sharing your thoughts.
I should send this to MY in-laws JoJo. I insult them by not eating their food. They don’t seem to believe that I have severe food allergies. And going out with people is SO difficult. They say things like, “Just have a little.” (You mean a little death. I want to tell them.)
Once while at a church dinner, people at our table said, “You’re not eating?” I said, “No I ate before I got here.” Of course the questions came, so hubby explained that I had severe food allergies and always eat before we go anywhere. One lady was SO uncomfortable with it that I ate a roll to make “her” feel better. The rest of the night she was refilling the rolls and shoving the plate my way because she was so uncomfortable. She literally kept telling me to have another roll. It was craziness I tell you!
If I go to anything, I announce that I’m fine if they wouldn’t make a big deal of it. But I pretty much don’t go to functions anymore.
Thank you for sharing that, Susie. I’ve run into that before as well, but not to the degree you have. I love your line, “a little death.” LOL
Oh, my goodness, yes!
The hardest part for me is the vagueness of it all. The food sensitivities are frustrating, but that’s concrete, at least. I can tell someone, “I can’t eat xyz” (well, and most of the rest of the alphabet! 😉 AIP here, too.) and be able to put it into words.
It’s all the other stuff I can’t articulate that I find so difficult when it comes to other people. I don’t know exactly what’s wrong with me, or what it is I’m feeling (I just know it’s yuck 😛 ), or how much energy I do have or will have, or where the tipping point is. And I don’t LOOK like anything is wrong with me, so I feel like people around me just think I’m lazy or wimpy or picky. (If the truth were known, probably some do and others I’m just projecting onto.)
You’ve described it all so well, though! The only bad thing about this article is that it’s evidence that there are so many of us. 🙁
Rachel, Sweetie, I understand. And you are right. It is so sad that there are so many of us out there struggling with this. I used to think I was the only one. I’m sure so many of my readers did too. Part of this blog’s mission is to let them know they are NOT alone and they are NOT crazy or lazy. Part of it is to let their friends and family know they aren’t either. 😀 God bless you.
omgoodness. This says everythig!!!!!
Thanks, Laura.
JoJo I deleted my facebook page but am following you on here. Please feel free to put my email address with your address book and keep in touch. HUGS SISTER!
I’m sorry to hear I won’t see your posts on FB, but I’d love to keep in touch. Make sure you are subscribed so you get my weekly posts.
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Thank you so very much for writing this post. I, too, plan to print this and show it to some of my family and friends. Again, thank you!
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I am so glad to see this because people do not understand. They expect others to fit in the life they live. Why do they not stop by and visit instead of assuming we just do not care. I suffer every year from SAD and cannot promise I will be there for Christmas. Family lives close and if the gathering is at night I just may be able to show but not a definite. Some years I did but ran late. I go through this every year and feel upset that others become upset with me. I cannot controll SAD and doctors are still learning about the disorder. I usually am home alone on Christmas and most likely sleeping. I miss all of my family members and all of the good food. What a way to spend Christmas and all because of health issues. Anyway Merry Christmas and a Hapoy New Year! See ya in the spring. Lol
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I have to say that everything I just dread hits the nail on the head…one thing I want to add is this; A LOT of us with chronic health issues don’t go to either a doctor or hospital ER when we really should be seen because most of the time, from my experience, we get treated like we are crazy…just had an incident where I passed out cold and when my hubby shook me to make me I had no choice but to bolt to the bathroom as I woke to a crazy sense of nausea…I couldn’t speak, I could “think” the words I wanted so badly to say but nothing would come out…my husband put me in the car and off to the ER we went…I don’t remember much from that day, I do remember opening my eyes outside of the ER and saying repeatedly “I don’t want to go in there” to the best of my ability anyway…long story short, this “Dr” comes in and I can hear him speaking to my husband and the first words to come out of his mouth were “I don’t know who you are to her” at which point my husband said “she’s my wife!!!” The “Dr” continues on and tells my husband “Your wife is drugged”…I was no more “drugged” than than the man in the moon…the “Dr” went onto explain that I wasn’t capable of making decisions on my own and hearing all of this, I was thinking to myself “SNAP OUT OF WHATEVER IS WRONG AND STAND UP FOR YOURSELF!!!”.. I managed to pull myself out of the hospital bed From the end of the bed (as I tried to put a leg over the side of the bed, the “Dr” pushed me back and snatched the side rail up) and on legs that felt like rubber bands, proceeded to tell the “Dr” that he had NO RIGHT to treat me or my husband the way he was without any tests being run or physical examination, he made the assumption that I was “drugged”…I suffer from antiphospholipid syndrome, which has caused me to suffer from several episodes of PE’s and DVT’s…we almost lost our youngest son because I suffered PE’s while 30 weeks pregnant which took my life three times…I also suffer with Lupus, Fibromyalgia, Chronic fatigue, Sjogren’s syndrome, Degenerative disc disease, adult onset scoliosis, the list goes on…I am three weeks post Poppops from gallbladder removal and my husband was terrified I was suffering from a stroke, I can’t lie, I was terrified as well…all of that being said, this “Dr” accusing me of being “drugged” NEVER ran any blood work, never so much as asked ME how I was feeling or what my symptoms were…my speech was slurred, I Was weak and had other symptoms of either stroke or blood sugar being to low…here I am the following day stuck in bed with a “foggy” feeling…I’m not myself and I know it…what am I going to do??? Suffer, because I refuse to be treated like anything but a human being and I have been treated so poorly by other “Dr’s” that don’t take the time to understand autoimmune disorders or get past that those who suffer are SICK, NOT “drugged”…
I’m so sorry you were treated this way, Josie! So many of us are told it’s all in our head, but this story is one of the worst I’ve ever heard. I pray you are doing better today and can find a dr who will listen and treat you accordingly.
My heart goes out to you, Kara!
You are very welcome, Jo.
Excellent post JoJo. I’d like to add my own frustration from my years with Chronic Fatigue – having family members call you “lazy” because you don’t “look sick”. That just plain hurt. Thank you for posting and giving a voice to those that feel they don’t have one.
So true! Many of us have had that response as well. You are welcome! My mission with this blog is to make sure nobody feels alone.
Thank you so much…I have lost 90 pounds in the past 12 months and and have had so many other issues along with it, my body just hasn’t been “right”…I did find out out what was going on with me, my blood sugar had dropped dangerously low and for the past two days I’ve been trying my best to keep it stable…time start worrying about yet another health issue…ugh…when is enough enough already??? I know that’s something a lot of us suffering with “invisible illnesses” wonder, from my experience at least…thank you for stepping up and speaking out for all of us and for giving us a place to share our experiences…I would really like to file a complaint against the “Dr” that I saw in the ER, I’m just not sure where to start…I will be checking in often…Merry Christmas and have a safe and Happy New Year…
So glad you figured it out. You know, I had a really bad sugar issue a while back. Kept passing out. We thought I was dehydrated so my dh gave me Gatorade instead of water. That’s when things got really bad. I didn’t wind up in the ER but I did have a rough few weeks til I figured it out. I have reactive hypoglycemia so I need to watch how much sugar I have. At first I couldn’t have any. Now I can have some. Merry Christmas, Josie! Take care of yourself!!
I love your article, not only this one but also others because they are always logical and easy to understand. I really appreciate it.
Thank you, Den.
I love your article, not only this one but also others because they are always logical and easy to understand. I really appreciate it.
Thank you.
I love your article, not only this one but also others because they are always logical and easy to understand. I really appreciate it.
I love your article, not only this one but also others because they are always logical and easy to understand. I really appreciate it.
Thank you, Mark.
I love your article, not only this one but also others because they are always logical and easy to understand. I really appreciate it.
Thank you. I try to keep it simple.