Meet “Julia,” a university professor who suffers from chronic pancreatitis. She is often in pain and certain foods aggravate her condition. Last time she and I had a coaching session, she was out on long-term disability, having surrendered to her need to put her personal welfare ahead of her career. On the personal side of life, Julia is married and enjoys spending time with her husband, but family get-togethers are stressful for her. And because she lives geographically close to her siblings, their children and her parents, they expect her to be there and to participate in the festivities.
Whether you like the holidays, or you don’t, there is a perceptible insistence – at least in the United States – that we should all be merry and “get into the spirit.” If you can’t the options appear to be limited: you can put a smile on your face and pretend all is well, or you can risk condemnation and refuse to participate. Either way, it feels like you lose.
Ironically, we have a system in place for people who are too sick to work to take an official “leave of absence,” but we don’t have any graceful way to do the same with our family. It is up to us to take that leave, if need be.
One day, Julia and I talked about her reluctance to attend yet another family gathering, and the guilt she felt because she preferred not to. She wanted to make her family happy, but to do so came at a price. She often returned home sick and in pain.
Unfortunately, Julia had fallen into a victim loop.
She was sure that her family resented her for being sick and that they expected her to contribute more because she didn’t have children. She felt ashamed and disappointed in herself, and also resented the pressure. Yet, she was determined to elevate her experience so we took a look and considered what she might do to take care of herself while at these events.
I understood Julia’s plight. When I was dealing with Crohn’s Disease symptoms (a severe intestinal illness) I was similarly reluctant and felt similarly trapped. One year I was feeling so poorly that I desperately wanted to opt out of Christmas at my mother-in-law’s house. Fortunately, my husband was available to hear me express my reluctance. In the wake of being heard and understood, some of the stress I was feeling dissipated and I ended up going. Most of the time I sat quietly in a chair and watched the conversations around me without participating in them. That was all I had to offer, and it turned out to be enough.
The key was communication. Julia realized that by keeping silent and sucking it up, she wasn’t giving her family a chance to understand, or to shift her own experience.
In step 4 in “Business from Bed,” Recruit and Request – Ask for Help, I laid out some guidance about how to ask for assistance at work. The same approaches can be applied to communicating with anyone about your illness. Understanding and compassion starts with you. You have to get to a place in yourself where you can:
- Admit that you are limited in what you can do.
- Accept that you can’t always be or do what you – and others – might otherwise like you to be or do.
- Allow others to pitch in where you might not be able to. Identify possible allies.
- Ask for assistance and for understanding.
Julia couldn’t predict her level of energy until the day of the event, but she could articulate what her limitations might be based on past experience. From there, we crafted a couple of simple statements she could tell her family to help them understand. In addition, it was important for Julia to recognize that her projections of her family’s judgments might or might not be true. She had to be willing to be wrong, and to be open to the possibility that they would understand.
Ultimately, the responsibility for your welfare starts and ends with you. All that guilt, fear and worry about what others might think is none of your business. If you are not feeling well it can be harder to know your truth. Yet, this is where you must begin. First, let yourself off the hook and from there, tune in. What is going to be best for you this year?
Joan Friedlander is the author of “Business from Bed” and co-author of “Women, Work, and Autoimmune Illness.” Joan is an expert in working and living with chronic or serious illness. Through her books and coaching, she helps small business owners who need to recalibrate business activities in the wake of a health setback. For more tips from Joan, visit http://www.businessfrombed.com.