This Thanksgiving week, at a time when almost everyone is stressing out over travel and preparations and relatives, for those of us with chronic illnesses, the season brings additional sets of challenges.
Chances are, if you don’t have a chronic illness yourself, then one of your family members that you’re about to see does. It can feel awkward wondering what you should and shouldn’t say to this person, but as someone with both physical and mental health challenges, I’ve assembled a few tips for loved ones.
1) Don’t make comments on what they do or don’t eat.
Many of us with health conditions have to follow strict diets to keep the worst of our symptoms at bay—it usually has nothing to do with trying to lose weight. For us, taking a “cheat day” could mean spending the rest of the day in bed with a horrible headache or in the bathroom with nausea. If we say no thank you, don’t pressure us to eat something anyway, and don’t take it personally.
On the other hand, sometimes we decide to break our rules because we really want to eat something! Don’t ask if we should really be eating anything that’s on our plate, because chances are, we’ve already contemplated that a lot. Also, some people who don’t normally eat dairy or wheat, for example, may be able to tolerate small amounts. You don’t know what our bodies need. Trust that we do.
Also, many people with chronic illnesses also struggle with eating disorders (like me), and it can be extremely triggering for someone to comment on the quantity of food we eat—or on the quantity of food anyone eats. Try focusing on the people who are eating rather than the food they are putting into their bodies.
2) Don’t expect them to help as much as others with meal prep.
Many people with chronic illnesses have no problem cooking, or they can tolerate it for one day if they can rest the weekend after Thanksgiving. However, there are also a lot of us for whom cooking is too taxing. We would have to choose between cooking the meal and engaging in conversation the rest of the day—we do not have energy for both.
So if your chronically ill relative chops a few vegetables and then leaves to go sit down, don’t object. She may sense that she’s about to reach her physical limit. Don’t assume she’s being rude or selfish.
3) Don’t be offended if they have to leave early or go find a quiet room.
Many people who are chronically ill don’t look sick, so you won’t always know when someone is on the brink of exhaustion or a migraine or any number of other symptom flares. Say how much you enjoyed seeing us and then don’t make a show of us being the first to leave.
Also, consider having a designated quiet bedroom away from the activity where we can rest. Some of us must take a nap to recharge every day, and unfortunately we can’t take a break from this ritual even on a holiday without sacrificing our health. If you’re the host, let us know you’ve made this room available as soon as we arrive so that we won’t have to hunt you down when we’re approaching our limit. If you have a recharge room for us, we might not have to leave early.
4) Don’t comment on their appearance.
Complimenting our outfit is probably fine, but chronic illness can result in unintentional weight loss or gain, or it can alter our appearance in other ways. We might already feel very self-conscious about this, so don’t point anything out. Even if we’ve lost weight and you think it looks good, don’t say anything because we may be struggling with the idea that we need to gain it back to be in our best health—thinner isn’t always better!
5) Don’t make envious comments about them not working due to their illness.
Being unable to hold a job or taking a break from school because of an illness is not a vacation! We do not find it fun to stay at home resting all day. We’d give anything to be well enough to work, so if you have a job and imply that you’re jealous of us, we may have to restrain ourselves from giving you some choice words.
It gets old and boring and sad being home alone all day. We often don’t even have energy to pursue hobbies very much, either, and most of our outings are probably to doctor appointments. Managing a chronic illness can be a full-time job between fighting insurance companies, getting to appointments, taking all our meds and supplements, eating right, and sleeping enough—some of us have to sleep as much as or more than we’re awake, and that gets old quickly.
6) Don’t offer unsolicited medical advice—instead ask how you can support them if their illness comes up in conversation.
Just because exercise helped with your tiredness doesn’t mean it will cure our chronic illness. Some people who are sick are still very active and eat impeccably, but exercise and healthy eating can’t fix everything. Also, the tiredness from working a 9-5 is nothing like the bone-crushing fatigue some of us live with, which leaves us homebound and in wheelchairs, so don’t compare.
Keep in mind that some illnesses are managed with measures that go against popular medical advice. For example, with POTS, many of us are told to consume large amounts of salt every day. With my other illness ME/CFS, exercise can worsen the condition. We have done more research on our condition than you can imagine, so chances are we’ve already looked into whatever you’re suggesting. Try just listening and believing us. Asking questions about the condition is also more preferable than unsolicited advice, but respect when your relative doesn’t want to talk about something.
7) Do talk about “normal” things.
Just because we’re sick doesn’t mean that’s all we want to talk about—quite the contrary! We’re probably tired of thinking about our illness, and we’d truly like to hear about what all of our relatives have been doing. We need to be distracted and to feel like we’re still part of things even if we’re sick. We really don’t want to just be “the sick person” in the family.
And don’t act weird around us because we got sick, and don’t assume you need to say something about it. It’s just nice if you say you’ve been thinking about us. Don’t try to find the perfect trite saying.
8) Above all, treat us like the person you’ve always known us as.
Although our illness might change how we look, what we eat, what we can do, and how we live our lives, it doesn’t change who we are. Remember that beneath it all, we are the same sibling, child, cousin, niece or nephew, or aunt or uncle that you’ve always loved. So just welcome us, treat us with the respect you’d want for yourself, and be happy that we are here for the holiday.