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For those living with chronic illness the holidays can be especially harrowing. Special meals, extra outings, and interactions with people who don’t understand chronic conditions can add to and exacerbate the normal stress we all feel during the holidays. One day it’s a naïve coworker, the next it’s a close family member who should know better. Understandably, it’s easy to get frustrated by social interactions this time of year.
I decided to ask our community how they cope with misunderstanding and the holidays. The following is a list of phrases they’re tired of hearing and some of their ideas for what to do about it.
“You don’t look sick.”
When others can’t see your condition it’s really tempting for them to doubt, minimize, or brush it off altogether. This is especially worrisome because the impact of that doubt can hurt you emotionally, physically, medically or even financially. It can also lead to social isolation and the loss of relationships.
“People are constantly saying that I don’t look bad so why do I feel so bad. Or, ‘Why are you parking in a disabled parking spot? You don’t look disabled.’ What do you want for me to do, lay on the floor in a fetal position crying out for help? Pain is pain.” – Stuart, CRPS
“Many people have the perception that ‘if you look okay, then you must be okay.’”– Natalie, Ankylosing Spondylitis
“I get ‘You’re too young to have arthritis!’ all the time. It’s ridiculous. People don’t realize that there is such a thing as autoimmune arthritis. It’s frustrating.” – Ashley, Ankylosing Spondylitis
Something said out of ignorance might be meant as a compliment or to avoid feeling awkward but when people say “you don’t look sick,” it’s adding stress and burden to a life that just doesn’t need it.
How to deal: Take time to educate them.
You don’t have to prove to anyone that you’re sick and you have the right to choose how and when you use your energy to educate others. However, if you decide you’re up for it, teaching others about your condition can help strengthen relationships and create much needed allies.
“I don’t get offended. I take time to educate them.” – Joanna, CRPS
Here are a few ways you could choose to help others understand:
- Have a short explanation or “elevator pitch” prepared.
- Bring medical literature.
- Print up a card that explains invisible illness and/or the spoon theory.
- Invite others to attend a doctor’s appointment with you (if you’re comfortable with that).
- Find a blog post or video that explains your condition well.
- Come up with a go-to analogy for explaining your condition. Here’s an excellent example from Brenda who lives with CRPS: “I tell them it is like hitting your thumb with a hammer. It hurts and hurts but you know later on it will stop. My pain don’t stop. For me, pain is a burning sensation. Like when you get a really bad sun burn but imagine the burn three times worse!” – Brenda, CRPS
“You should _______. It will make you feel better.”
There are always people who want to offer advice, compare stories, make judgements or share opinions even when they are unsolicited. In fact, many dread the holidays because of these highly uncomfortable interactions.
“I hear it all the time…. ‘Get some exercise. You will feel better.’ or ‘Try this supplement or drug, you will feel better.’ ‘Let’s go walking/hiking/swimming/ shopping, etc. You will feel better.” – Melissa, CRPS
“More than one person has told me to get more exercise & fresh air …..that can help but it doesn’t solve everything.” – Robin, CRPS
“Quote from my father to another person, ‘I don’t like to take the medicine I was given for my surgery because I don’t want to get addicted’ as I was sitting right next to them at the table, and I have to take narcotics to function.” – Eden, CRPS
Unsolicited opinions and advice almost always seems judgmental which is why it causes so much damage. Unfortunately, many people will never understand that their “help” can be hurtful.
How to deal: Flip the script or exit stage left
You don’t have to listen to unsolicited advice. It’s not your job to make other people feel comfortable or helpful. If you need to change the subject or exit a conversation, try some of these strategies:
- Brainstorm 2-3 “small talk” topics (sports, hobbies, news) you can use before you arrive at a party.
- Take a trip to the bathroom. Get some fresh air or more food. When you return you can start a new conversation with a different subject.
- Draw other people into the conversation if you can.
- Ask questions. Focus on the other person. Ask them to talk about themselves.
- Bring the conversation back to an earlier topic.
- Talk about the present. Get your conversation partner thinking and talking about the place, people, and food.
- Fake a call. “Whoops, I better take this….”
- Use transition phrases. “Yes, but…” “That reminds me…” “By the way….”
“Look on the bright side.”
Negative feelings and thoughts can lead to depression, isolation, anger or worse, so it seems reasonable to assume that positive thinking leads to feeling better. This is probably why so many people encourage those living with chronic conditions to look on the bright side and keep their chin up.
“Too many times I’m told that I have to be positive, that I’m giving in to the disease that I need to force myself to get up and get going. It’s so frustrating because I am fighting with everything I have to keep living, to not give up, to smile, to live without the purpose I was raised to believe in such as … to work hard, be a contributing member of society, to exercise, eat properly, control our emotions and to enjoy life. I am often treated like I have no choice in my life, that I should be doing whatever anyone suggests for treatment, for enjoyment, for life, and for future, it’s so frustrating.“ – Anonymous, CRPS
“My own mom told me to be thankful it wasn’t cancer right after I was diagnosed. I harshly replied that at least cancer comes with the sweet relief of death. I know that was inappropriate, and simply the wrong thing to say. I later corrected myself that, with cancer, you know where you stand. There are tests for it. You know if you have beaten it. If it is terminal. If you are in the beginning stages, etc. With CRPS, you do not know any of those things.” – Samantha, CRPS
How to deal: Enlist an ally
Psychology Today suggests that aiming for accurate and useful thoughts may be more beneficial and less tiresome than constantly trying to stay positive. But how does knowing this help you when you’re confronted with people constantly telling you to be cheery? If you can, enlist an ally who can support you and help set a more positive tone when conversations start becoming unproductive.
“Aren’t you better yet?”
We’re meant to get better. At least, that’s true of acute pain and it’s what conventional thought has lead most to believe about illness. But when you have a chronic condition “all better” isn’t always possible. Sometimes people can have a hard time understanding that.
“I think the worst thing people say is, “So when is it going to get better?” –Jo, CRPS
“I think it’s most frustrating when it’s people that are close to me or who I interact with regularly. It’s really hard when people who know that you have a permanent chronic pain disease still ask, ‘You’re not better yet? What are they going to do for you?’” – Leigh, CRPS
When there is no improvement or symptoms worsen, it is easy for outsiders to believe you are exaggerating, faking or not trying hard enough. This is compounded by the fact that many chronic conditions are invisible which only adds to the burden of disbelief.
How to deal: Find ways to support yourself
Remember, you don’t have anything to prove. When unhelpful comments and conversations start stacking up take time for yourself.
- Go to the parties and events you really like. Skip the rest.
- Listen to calming music.
- Read a book.
- Take deep, centering breaths throughout the day.
- Watch a funny movie, call someone who makes you happy or read funny jokes online.
- Take a bath.
- Make your house smell nice.
- Make something. Take up a craft like knitting.
- Listen to your body. Eat when you’re hungry. Sleep when you’re tired. Take a break when you need one.
- Find a quiet place to be alone for a few minutes.
- Get some fresh air. Take a walk or simply go outside.
Have you been affected by a chronic health condition? Your story can make a difference! Sign up to share your experiences with Health Stories Project.
