What chronically ill people wish family and friends understood around the holidays

Living with a chronic illness, no matter 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 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.

I’ve come to realize 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.

I’ve shared most of this with family already and 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 realized 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 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 (but no names).

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, favorite 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.”

Do you live with a chronic illness? What other things do you wish friends and family understood around the holidays? Leave your thots in the comments.

Also, check out my tips for making it through the holidays with a chronic illness.