This post was written by our Resident Sexual Health Clinician, Dr. Kathryn Ellis, OTR/L, OTD, AASECT-SC, an occupational therapist and American Association of Sexuality Educators, Counselors, and Therapists Certified Sexuality Counselor. If you'd like her to answer your questions, submit them at the end of this page.
The holidays are often non-stop social time and a constant juggling of events for folks with invisible or chronic illness. This can be a grand ol’ time but takes some intentional balancing of social time and self-care.
It can be especially difficult if family members are dismissive of chronic or invisible illness symptoms and requested accommodations.
To help you navigate some of these more challenging dynamics, we’ve put together some strategies to help center the joy and reduce frustration with family members.
Our suggestions focus a lot on preparation and setting expectations in advance to help address unrealistic and dismissive expectations a family member can place on you.
1. Get an agenda in advance.
Ask your family to identify what the plans are for shared time together, so there is no surprise, like a flag football game with mandatory participation! Be upfront about what you can and don’t want to participate in.
The advance notice can help give family time to process your boundaries, possibly plan different activities, or space out the activities to different days. You can also take the lead on planning a family event together that you know you’ll be able to comfortably participate in.
2. Educate on an “ask before you help/touch policy.”
Sometimes people can help disabled people in a way that can be patronizing. Ask your family to ask you how they can best help you instead of trying to predict how to help. Educate that your symptoms fluctuate and that at different times you’re best supported in different ways that you’re able to articulate and request help with.
3. Pitch in with chores in advance.
Talk to your family about what needs to be done in advance of a get-together and during the get-together. Explain that you might not be able to help clean up after a holiday party, but that you can still contribute in advance. Contributing in advance helps you space out the tasks.
For example, if you’re bringing food, you can make two different dishes on different days and freeze them. Or maybe you can take over some of the management tasks, such as calling to order flowers or the turkey. In real time, you can offer ways to contribute that require less energy, for example, playing the DJ while everyone else is decorating.
4. Strength in numbers.
Is there a family member who you feel is more understanding than other family members? If so, ask them to tune in and amplify your requests. Encourage them to support you by having challenging conversations with other family members. If you have someone in your corner, you can ease up the burden on you by asking them to advocate on your behalf.
5. Prioritize your wellbeing.
There can be instances where no matter what angle you take your family continues to dismiss your chronic or invisible illness. They act or directly say that they don’t believe you. I see this a lot in Facebook group forums and within my clinical practice. It sucks! You’re not alone in this experience and it can really put a dark cloud on family holiday gatherings.
A few things can be helpful. Don’t try to keep up to either make your symptoms more obvious to them or go appease their wishes. You have to take care of yourself and over exerting yourself won’t make you feel physically or mentally better. Also, consider limiting your social time with your family. If they aren’t supportive of you, then less time may be better.
And finally, think of a supportive friend or maybe family member who isn’t there that you can reach out to for support in realtime. Ask your supportive person if they’ll be at the ready to receive a text and offer support.
We know the holidays can include highs and lows. Maybe you’re excited to spend time with your family and these suggestions will make the experience even better. If you resonate more with number five, remember to find other ways to feel joy and reset over the holiday season. Maybe plan a holiday party at your place or a brunch out at a restaurant. You control the guest list and you can celebrate with all your favorite people!
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