8 Tips for People Visiting Me During My First Christmas With a Chronic Illness

This Christmas — my first with a chronic illness — I’ve decided that opening our doors to family and friends is going to use up less energy than having to journey to their homes. I’m hoping the following tips will help my family, and anyone else visiting friends and relatives with a chronic illness, have an enjoyable Christmas.

1. Stay at home …

… if you’re ill, that is. My illness isn’t contagious; yours might be. Although it might only be a mild cold/cough/sore throat/throat infection to you, to me and my already compromised immune system, it signifies a real risk of several weeks in bed. Please also bear in mind any new viral or bacterial illness I contract will significantly exacerbate the multitude of symptoms I already have on a daily basis. I know it’d be a real shame for you to miss our day of celebration, but I’m sure you’ll agree it would be a bigger shame for me to miss the first two months of the New Year. Stay at home, say hello via FaceTime and then come to visit when you’re fully recovered.

2. Save me a seat.

I need to rest … a lot! That means frequent sitting breaks, even when doing things usually more suited to standing up (like cooking). One simple way of helping me this holiday season is to ensure that there is always a chair/stool/sofa available for me to sit on. Yes, I could sit on the floor, but getting up from such a low position increases the likelihood of me having one of my many dizzy spells and/or experiencing heart palpitations. And yes, I know I could ask someone to move for me, but I don’t want to feel as if I’m being rude to my guests.

3. Offer to help.

I’m used to being the “hostess with the mostess” (in my head, at least), so it doesn’t come naturally to me to accept help in the kitchen. However, I know that I should. So please, ask what you can do to help: make the drinks, clear the table, plate up the food. Anything you can do to ease the load on me will be greatly appreciated.

4. Keep the noise down.

One of the stranger symptoms I experience as part of my illness is sensitivity to noise. This fluctuates, so you might find me singing along to music one minute (sorry) and then having to turn the stereo down the next. I find it particularly hard to cope when a lot of people are talking at the same time, especially if I’m trying to listen to and participate in one of the conversations. When it all gets too much, it isn’t unusual to see me put my hands over my ears in response to this sensory overload. I’m not being rude — I just need to block out some of the noise.

The sound that seems to have the most extreme impact on me is the clanging together of crockery. The emptying of the dishwasher is positively torturous — so much so that I have to leave the room. So, while any help with clearing the table would be much appreciated, please try to do it quietly.

5. Acknowledge the elephant in the room.

You won’t be able to avoid my illness during your visit: watching me gulp my way through a selection of tablets in the morning, observing the careful addition of a powdered supplement to my drinks throughout the day, seeing me hold onto various body parts (my own) in response to pain or simply listening to me yawn (yet again). So please, ask me about it. Find out how my latest session with the specialist went, ask if the supplements are having any impact or inquire how I’m adapting to my “new normal.” Obviously, I don’t want to spend the entire time talking about chronic illness, but it’s a huge part of my life now. Asking me about my condition shows you’re aware of this and that you care.

6. Look for the signs.

Try to recognize when I’ve pushed it too far and need to rest. Everyone will have slightly different signs beyond the usual yawning. Some of mine are as follows:

• Holding my chest, ribs, back, head or ears.

• I’m in pain.

• Grabbing hold of something nearby.

• I’m having a dizzy spell or palpitations.

• Hands over my ears.

• It’s too noisy!

• Holding my stomach/side.

• Pain from swollen glands — I’m probably feeling nauseous, too.

• Leaning on things.

• I’m overly tired (even more than the usual constant tiredness).

• I’m unable to finish sentence or can’t remember what I’m saying.

• Brain fog (cognitive impairment).

• Flu-like symptoms — runny nose, shivering, coughing — which will randomly appear and disappear depending on how much I’ve done.

• I’m just generally shattered!

If you notice any of these signs, there are a lot of ways you can help. Make a space for me to lie down on the sofa, grab me a cushion and a blanket, turn down the TV or stereo, find a way to occupy any nearby children or bring me a drink and a snack. A word of warning, though. Please don’t suggest that I go and lie down in bed. I don’t want to miss out on any of the celebrations, even if I have to do so from the comfort of the sofa.

7. Reserve judgment.

I know you won’t spend hours on the internet, reading research papers, news stories and forums linked to my illness. I know that, with the best will in the world, you won’t be able to fully understand just how debilitating it is.

I will have spent hours on “pre-emptive” rest prior to your visit in the hope that I can stretch my energy envelope ever so slightly. I will also push myself beyond my usual daily limits, despite knowing I will pay for this with a worsening of all my symptoms for the next day/week. I will have decided that the pain I’ll have afterwards will be worth it in order to enjoy Christmas with my loved ones.

Please know I usually live my life within extreme boundaries: healthy diet, limited alcohol, early bed times, no social life and (at the moment) being practically housebound, with a wheelchair for when leaving the house is unavoidable. What you see during your visit is not my reality, so please don’t form any judgments based on it.

8. Have fun.

Finally, enjoy yourself. Hopefully, I’ll be enjoying myself, too!

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