Managing an invisible illness requires advocating for yourself and your boundaries, staying grounded in your identity and your passions, and being gentle toward yourself, Selak says. These seven tips can help.
1. Advocate for Your Health
If you have a doctor who doesn’t understand the symptoms you’re reporting or is unsure of how to proceed, don’t be afraid to advocate for your health and speak up.
“If your financial situation and insurance situation allow it, search until you find a doctor who believes you and has expertise in the symptoms you’re having,” Selak says. During her journey, she faced some trial and error before finding a medical team she trusted.
2. Set Boundaries
Whether you’re asked to commit to a business trip or join a family gathering, say no when you need to. And don’t feel guilty about it because your rest and wellness come first, Crawford says. “I recognize how incredibly difficult it is, but I really hope that people can feel empowered to set limits and do what they need to best take care of themselves,” she says.
You also get to decide how much or how little detail you want to disclose, Lupe says. “Some people are private, and they’re allowed to be private. You can speak about it in generalities and say, ‘I have a medical condition that I’m being treated for,’” he says. There’s no need to disclose more if you don’t feel comfortable.
3. Take a Pause
Invisible conditions can come with debilitating fatigue, from physical tiredness to the emotional toll of managing a chronic illness, says Selak. Be sure to give yourself a break when you need it, she says.
She began taking daily rest periods, marking out at least two hours midafternoon for a respite after years of disrupted sleep. “And that went a long way to helping me. And when I began to get more restorative sleep, it definitely improved my symptoms,” Selak says.
Getting this kind of support from your employer is crucial, too. For example, this may mean requesting any workplace accommodations that you might need through the Americans With Disabilities Act, such as an adjusted work schedule to allow you to go to doctor’s appointments or complete your work at an alternate time or location.
It could also mean working with your healthcare provider to complete Family and Medical Leave Act documentation and then speaking to your manager and the human resources department about taking time away if you need it, Lupe says. “It takes some of the pressure off,” he says.
4. Find Your Tribe
With a diagnosis of interstitial cystitis in hand, Selak dug deeper into understanding her condition and how it would affect her life, with the help of support groups and her family. She joined the Interstitial Cystitis Association, meeting other members with the condition, serving on the board for three years, and lobbying Congress to support research related to this rare disease.
“It really helps to process your story and your journey,” she says, encouraging others to join support groups to learn more about their condition and to make connections with people who fully understand what you’re going through.
Her family also became a pillar of support. As a group, they discussed how to adjust their lifestyle — family vacations, for example — to accommodate her needs.
Having allies like these can make the experience that much easier, Lupe says. Decide who you can open up to and let them in. “Talk to the people closest to you so you get that support. It’s an important variable that increases health,” he says.
5. Allow Yourself Space to Grieve Your Past Life
In their book, Selak and Dr. Overman describe four stages of living with an invisible illness: falling ill, receiving a diagnosis, grieving the news, and then living well and making peace with the condition. Keep in mind that you probably won’t move through these steps in a neat and orderly fashion, and it’s normal to experience bouts of grief even as you’re making peace with the condition, or to receive a new diagnosis while you’re still grieving.
During the grief stage, you may mourn your old lifestyle — what you used to do, eat, and prioritize that you may need to reconsider with your new condition, Lupe says.
“Accepting you’re not a healthy person anymore and what you’re living with is something you’re going to live with for a very long time, it’s almost like you have to let go of the person you used to be,” Selak says.
Talk therapy with a mental health professional can help you through this step. Crawford suggests trying supportive psychotherapy, which can give you — the patient — the floor to talk about what you’re going through. “It’s a unique opportunity to focus on just yourself without advice or homework. It’s a listening ear, and for some people, that’s quite helpful,” she says.
6. Find New Meaning in Life
Selak thrived as a stockbroker but had to leave her job to focus on her health. “Leaving my career was devastating. I loved it but had to say goodbye to all these wonderful people who worked with me for years,” she says.
But in the next chapter of her life, she discovered new life passions — philanthropy, writing books, gardening, and nature stamping — all of which fit safely into her new lifestyle as she managed her condition.
Selak encourages others living with an invisible illness to do the same, whether it is a creative outlet, spirituality, or learning a new language or skill. “Ask yourself, ‘Who can I be now? What will my life include now?’ And there may be great blessings,” she says.
7. Remember Your Illness Doesn’t Define You
Remind yourself that you are more than your invisible illness, Crawford says. “For a lot of people, they tend to identify with their illness, and it consumes their life. They get lost in the diagnosis,” she says.
This is why many doctors remind their patients that they’re living with their disease, instead of saying they’re schizophrenic, diabetic, or depressed, for example. Their condition is just one part of who they are, not their entire identity.
Take stock of who you are outside your illness, including all of the attributes that make you unique. You’re a parent, a daughter, a friend. You have talents and hobbies and interests. “You’re still a whole person,” Crawford says.
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