Blogger Janie Smith, who has Spina Bifida, shares her blog posts on how to deal with the Christmas holidays if you’re chronically ill. It includes tips on how to help you pace yourself and what your friends and family need to know.
Living with a chronic illness, no matter what the diagnosis, can be especially complicated during the holidays. Exposure to germs, weird foods, lack of rest, and lots of social pressure can really take its toll.
I’ve lived my entire life with a disability, so my family is used to me having ‘special needs.’ I also had gastric bypass 10 years ago, so they are used to me having what others might consider odd eating habits. I get questioned in some social situations, but fortunately for me, family gatherings are usually not as worrisome when it comes to dealing with chronic illness.
But, I have come to realise that for others, it’s not that simple. And to be honest, I feel like this year is different, even for me.
I’m on medications that purposefully suppress my immune system, so exposure to even the littlest cold can be a problem for me. I also deal with sensory overload, which some people call sensory processing disorder. The treatment also makes me need naps and rest time more than ever before.
Although I’ve shared most of this with family already, it’s up to me to know my limits and take the time I need. I may look fine, but I have to remember that I’m still dealing with illness.
Through my discussions with friends who also live with various forms of chronic illness, I’ve realised that a lot of family and friends who we aren’t around on a regular basis may not really get the idea of a chronic illness. This is especially true if the condition has changed/worsened since the previous holidays.
I asked friends to share what they wish family members and friends understood about chronic illness, especially around the holidays. The responses were amazing and had plenty of common themes. So, today I’m sharing those responses.
Tips for friends and family of those chronically ill
One of the biggest themes was food. Sometimes a chronic illness is directly affected by the food we eat, such as those with diabetes or celiac disease. Other illnesses, especially those that are auto-immune, are usually aggravated by the wrong foods.
Here were some things friends said they wished family/friends understood about food and chronic illness:
- “I’m not just being ‘picky’ about the food I eat or don’t eat. It affects my health in a very big way.”
- “It’s not an insult to the cook (or the cook’s fault) if I don’t eat the food, even if they really wanted to offer something nice. It’s not about your cooking; it’s about how my body reacts to the food.”
- “Please don’t ask me what happens when I eat food that makes me sick. It’s digestion, that usually means it’s coming out one end or the other. Either way, it’s gross and uncomfortable.”
- “When I refuse to eat your cooking, it is for your own good. You do not want me to use an entire roll of your toilet paper, and you really, really do not want to smell the bathroom after my body reacts to your food. Absolutely do not argue with me about [the food].”
Another common theme was around rest, activity and perception of illness.
- “When I say I’m doing fine, let that be. Don’t start with the, ‘Are you really?’ Don’t look at me like you’re sure I’m lying.”
- “I don’t ‘look’ sick but that doesn’t mean I’m not. I’m not being boring (or ignoring things) because I want to stay home or just rest. [I’m doing it] because I need to.”
- “Do not tell me I could be cured if I would just follow the advice of your cousin, favourite magazine or celebrity.”
- “I have doctors who understand my illness and know all my symptoms, many which I don’t make public. Please don’t try to sell me on some diet, oil or some other cure you’ve heard about.”
- “If I say I’m tired I mean it or am saving energy for the next thing. If I don’t help with something I’m not being lazy and I feel bad I can’t help.”
- “If I say I’m in pain, it’s not a normal pain like a minor headache. It means that I am in agony.”
Tips for living with chronic illness during the holidays
While it’s important for family and friends to understand, those of us who live with chronic illness must take responsibility for ourselves as much as humanly possible. When I asked what people wish others understood, another theme arose – the desire for tips to get through the holidays.
My friend Julianne gave me a great list and I wanted to add to that. These are great reminders for those who have lived with a chronic illness for a while, but especially helpful for those who were recently diagnosed.
Plan ahead and don’t procrastinate
This advice is a little late for this year, but plan ahead for all the tasks you need to do for the holiday season. Put each task on a different day on the calendar leading up to the holiday. If you have a spouse, children or family that you can count on to help you out with those tasks, delegate them early on.
Now that we’re a few days from Christmas, decide what you really have to do and what you ‘should’ do. Will the holiday really be ruined if you don’t get it all done?
Don’t get stressed out by trying to do everything on your own and at the last minute. Stress aggravates any illness and can really make the holidays less fun.
Be sure to give yourself time to rest. This includes leading up to the holiday, during the holiday, and after the holiday. You aren’t letting anyone down; you’re taking care of yourself.
If you are travelling and know you need time to rest before going back to your regular life (work, childcare, etc.), plan to go home and rest for at least a day before you need to be at work. It is tempting to stay with your family a little longer, but the rest is extremely important.
I’d love to stay with family an extra day but know both my husband and I need at least a day and a half to recover even from our short trip, so we are coming home late Saturday morning.
Have a plan for where and how you will rest while visiting relatives. Don’t wait until you’re exhausted before you rest. I don’t need to tell you that will just make it harder to recover.
Think ahead about food
The holidays are filled with lots of food that is out of the norm. Rich, delicious food. Know your limits and don’t test them. No food tastes so good that it’s worth throwing up, passing out, or otherwise feeling bad.
If you are on a specialised diet, I have several suggestions. First, let your family know ahead of time. This is especially true if your sensitivities have changed since the last time you were with family. I also suggest bringing your own snacks and goodies so that you won’t be tempted to indulge in holiday treats that will make you sick.
As I mentioned above about what family members should know, if the ill family member doesn’t eat a certain food, it’s not to insult the cook.
Don’t let yourself get guilted into eating something that you know will make you feel bad. Be kind, but firm.
Talk to your family about theirs and your expectations, how you are feeling each day, and how much you appreciate them even when you can’t always participate.
Also, ask for help. If you need to take time away, just express that.
What other tips do you have for the holidays and living with chronic illness? Leave your thoughts in the comments box below.
By Jamie Smith
Visit Jamie’s blog, Sunflowers and Thorns, to read more of her blog posts.
More on Disability Horizons…
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- How to make new friends when you have a disability
- 10 celebrities who have struggled with mental health
- 8 Stylish Accessible Gifts for Disabled People this Christmas