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How to Cope with Family Gatherings When No One Understands Your Illness

family dinner

The holiday season can be filled with moments of love and joy, but it also can be stressful for those of us living with chronic illness. This is especially true if your family doesn’t understand what you are going through day to day. If you are worried about managing the holiday season with your family this year, here are five do’s and don’ts to help you navigate family gatherings when feeling misunderstood.

  1. Let people know what to expect. If you don’t tell your loved ones what you need, they won’t be able to help give it to you. A close friend of mine keeps a live Google Document with a current health status, a list of foods she can eat, and a couple tips on how to best support her. Try making a guide like this of your own and share it with you family before you get together – more often than not, when people know how to support you, they will.
  2. When it comes to food, make something you know you’ll enjoy. One of the most challenging things about navigating the holiday season with a chronic illness is sorting out dietary restrictions. Before you get together with your family, spend some spoons on preparing a dish you know you can eat and will enjoy. This ensures that you aren’t left out of the family meal. If you aren’t able to make something for yourself, ask a friend to help you prepare before you connect with your family.
  3. Find an ally. Whether this is someone in or out of your family, find someone you can touch base with through the day. Family gatherings can induce anxiety for those of us battling illness and having a friend or ally checking in with you can make a real difference.
  4. Decide on a safe space to rest before you arrive. This is a big one. Make sure you have somewhere quiet and calming that you can retreat to. This might be a guest room, a study, even your car. If you have somewhere safe and comfortable to rest, you may have more stamina for the day.
  5. Try not to over-extend yourself. Family gatherings are exhausting even for able-bodied folks! Try not to give more of yourself than it is healthy to give. Does it make sense for you to come in before a meal and hang for an hour before going home? Do it! Even if they don’t understand your day to day life, most families want to love and support each other. By making choices that take care of YOU, you’ll be able to better invest in moments of positivity throughout the gathering.

Every family is different, and every illness experience is different – some are shaped by more toxic support relationships than others. But if you can communicate clear expectations, find support where and when you need it most, and be able to take yourself out of the situation when you need to – you’ll be able to manage your next family gathering with grace, positivity, and strength.

Blog post written by Allie Cashel, expert patient featured in the book Lyme Disease, medical myopia and the hidden global pandemic. Available from Hammersmith Health Books. 

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