Being diagnosed with celiac disease is a life-altering event. So much of our lives and cultures center around food. We use food to anchor celebrations, holidays and family or community traditions. We give food as gifts and use it to show our love, appreciation and support for one another. We often use it as a medium for expressing our creativity. There is so much meaning layered on top of eating that it should come as no surprise to us when we are diagnosed that our relationships are impacted, often severely so.
In the first years after my diagnosis, many of my relationships took quite a beating. People with whom I quite literally broke bread now were left unsure of how to feed me safely. Most had absolutely no clue about the extent of cross-contamination and the steps to take to avoid it. My social life in my community was so centered on the sharing of meals that I wasn’t sure how to navigate the now muddy waters of having to refuse certain foods, and figure out whether to eat before events, take food with me, or not go at all.
There is no denying that celiac disease can complicate your social life!
I do believe, however, that a lot of that can be mitigated and prevented by addressing it head on, asking and answering important questions, and defining for yourself what your priorities and values are with regard to your relationships.
It is worth setting aside some time after your diagnosis, and again as any specific issue surfaces, to identify what challenges managing your disease poses to your most important relationships, what your underlying values are that govern those relationships, and clearing away everything that clutters up your ability to remain focused on those values. Even better, if you can move past the surface of the actions of those you love as they relate to food to uncover the motivation lying underneath, you have valuable information that you can use to help continue to build and strengthen your important relationships.
Some of the underlying motivations for how we relate to food to consider:
- expressing love or concern
- family unity
- supporting someone during a challenging time
Knowing which of these motivators (and/or others) are behind your loved one’s frustrations at your required lifestyle change can help you to bridge the new divide. Conversely, knowing which of these motivations (and/or others) you feel is being frustrated and impeded by the new limitations of your disease can help you to know where to focus your energies and also allow you to grieve the change and loss.
Once you have identified the underlying motivations, one of the most important things that you can do to ease the potential strain on your relationships is to have open conversations with your loved ones about your diagnosis, what it requires, and how any specific expectations may need to change. Speak to these underlying motivations and recognize the good intentions behind them as you talk with your loved ones. Remember that while your diagnosis primarily impacts you, you need to explicitly acknowledge the huge shift that they will be making along with you. This is particularly true if we’re talking about a relationship with someone who lives with you. Listen to their additional frustrations and concerns, and work together with them to come up with solutions. Know that it takes time to find happy solutions for everyone, and gently remind people that as you are working towards those solutions, that you will be needing to do whatever is necessary for your healing. Remind them that it’s a learning process for you too, and enlist their help in that learning where they are willing and able to give it. My experience has been that those whom you involve in your journey of change tend to understand it the best and even to become advocates for you when necessary. As much as possible, avoid accusations and don’t let resentments build up. This is difficult and important work.
One of the best things that you can do to simplify things for yourself and others is to define for yourself what your boundaries around food need to be and then to communicate them clearly. No, this will not always be well-received and it can take some time to sort out and adjust to, but it is the simplest way for you to move forward and for people to understand where you are at. It allows people to adjust their expectations accordingly and move forward with you towards establishing new routines around how you handle food within the relationship. When you feel that your boundaries need to change, be flexible about it and communicate clearly with those whom it may affect.
Some of the lines you may decide to draw:
- Not eating at other people’s homes
- Identifying a list of restaurants where you feel comfortable and safe eating
- Not accepting any kind of homemade food products because of the risk of cross-contamination
- Taking your own food to dinner parties
- Going along to the restaurant but only having a drink instead of a full meal
As you identify these boundaries, it can be helpful to keep in mind some things that you can do to help strengthen your relationships with the people you are close to and eat with on a frequent basis:
- Spending some time teaching a friend/family member about cross-contamination and how to avoid it when cooking for you
- Setting up a “gluten-free box” box of supplies to be left at a relative or friend’s house where you visit or eat often
- Bringing a dish to share, just ask to serve your own first to avoid cross-contamination
- Revamp a special dish or a family recipe so that it’s gluten-free and share it with your loved ones
- Bring your favorite naturally gluten-free items as hostess gifts
- Host dinner parties that feature familiar foods and menus, revamped if needed, or all just naturally gluten-free
I know that all of this can be completely overwhelming as you are just learning to manage to feed yourself without getting horribly sick. It’s overwhelming when perhaps you’re dealing with frequent glutenings, you’re exhausted and trying to maintain some semblance of your life before celiac disease. Perhaps some of your loved ones from whom you most need support in your transition are reacting in toxic ways.
As always, my reply to that is to focus on what you can simplify. Some of these suggestions can be implemented a few months down the road. Some of them have taken me years to figure out and begin to implement. As always, focus on lifting the load first to give yourself some breathing room, then proceed slowly according to what you feel is most important.
Have those conversations with your loved ones first – answer their questions about the disease and mourn together the loss of your life before. It’s okay to do that. Cancel engagements that center around food and don’t add value to your life. It’s okay to be ruthless when necessary; this is your health and your wellness. Reconsider and redefine relationships with people who aren’t supportive of your healing process and who actively ignore your needs or try to sabotage your efforts to change, whether physically or mentally and emotionally. These aren’t easy steps to take, but ultimately will simplify your life and allow you to move forward and create a life with celiac disease that is focused on thriving.
What about you – what are some of the most important actions that you have taken to strengthen your relationships or navigate difficulties in relationships as you have made the shift to the gluten-free life? What have you intentionally simplified or eliminated to make room for your relationships to flourish? Please feel free to share, add your thoughts, or challenge parts of my post that you may not agree with. With how important relationships are to our well-being, added to the stress that celiac disease can place on them, this is an important conversation for our community to be having.