You have a chronic illness that is debilitating and requires meticulous management. Which is hard enough. But you also have an invisible illness—like fibromyalgia, diabetes, Lyme disease, IBS, or something very rare.
On the outside, on most days, you look fine, even perfectly healthy. But on the inside, you’re struggling with unbearable migraines, knock-you-off-your-feet fatigue, dangerous digestive issues, severe pain and much more. Because people don’t see these symptoms, they misunderstand what’s going on, which leads you to feel judged and lonely. And these people might include everyone from medical professionals to your best friend.
Or maybe you’ve yet to receive a diagnosis, and others suggest it’s all in your head. Daniela Paolone’s clients who have undiagnosed invisible illnesses often feel invalidated and dismissed by doctors and even loved ones, which leads them to feel isolated as well. Paolone, LMFT, is a holistic psychotherapist who specializes in working with people with chronic illness, pain and anxiety. She also lives with a rare invisible illness.
Still, the worst critic, the cruelest bully, might be you. Maybe you bash yourself, launching into a litany of insults. Lazy. Weak. Worthless. You think thoughts like: “Don’t be a wuss, it’s just a headache,” or “If everyone else has the flu and can still make it till clock-out, my pathetic ass should too.”
The latter examples come from Surviving and Thriving with an Invisible Chronic Illness, an empowering, practical, insight-filled book, written by Ilana Jacqueline, a professional patient advocate who has two rare invisible diseases: primary immune deficiency disease and dysautonomia. Jacqueline pens the award-winning blog Let’s Get Better.
When you have an invisible illness, it can feel like you’re treading water—or drowning. You feel frustrated and overwhelmed. Which is totally understandable. Thankfully, you can thrive. The below tips may help.
Be kind, gentle and patient with yourself. “You have been through a lot, and deserve the time and grace to feel whatever comes up without judgment or self-criticism,” said Paolone, owner of Westlake Village Counseling in Westlake Village, Calif. When strong emotions arise, get curious and observe the sensations swirling through your body.
It also can help to practice breathing exercises to lessen intense emotions. For instance, Paolone suggested on the inhale, saying, “I am breathing in calm, healing energy.” On the exhale, say, “I am releasing that strong emotion and feel it leaving my body.”
Be strategic about doctor visits. In Surviving and Thriving with an Invisible Chronic Illness, Lauren Stiles, CEO and co-founder of Dysautonomia International, shares invaluable strategies for making the most of your medical appointments:
- Before making the appointment, ask yourself why you’d like to see this doctor. Maybe you’re looking for a second opinion. Maybe they offer a special test or treatment.
- Make four lists: 1) your questions, from most to least pressing; 2) your symptoms, from most to least bothersome; 3) your prior diagnoses; and 4) your current meds and drug allergies. Write your name and date of your appointment on each page. Ask the doctor or staff to put photocopies in your chart, and have your own copies for speaking to the doctor.
- Assume your appointment will be 15 minutes.
- Don’t say bad things about other doctors or hospitals (even if they were terrible); or bring a giant binder of your medical records into the exam room. “That binder can very easily be misinterpreted as hypochondriac, attention seeker, or patient that is too complicated to get involved with.”
- At the end of your appointment, make sure you’re clear on the game plan. “Is the doctor ordering tests or writing a prescription? Where do you go for the tests? Who will get the insurance approval for the tests? How will you get the results? When should you come back for a follow-up?”
Reassess regularly. It’s hard to make decisions about your treatment. In the book, Jacqueline shares an excellent list of questions to help you take a step back, refocus and remember what matters to you and what you want: “What am I willing to give up to feel my best? What side effects am I willing to put up with? How much time and energy do I want to commit to treatments? How much suffering am I willing to endure? What doctors do I trust? What specialists are most knowledgeable about my disease? How can I communicate my symptoms most effectively? What preventative steps can I take to give myself the best chance of overcoming disease flare-ups?”
Focus on your quality of life. Your days can easily become all about your diagnosis, all about never-ending research and never-ending doctor’s visits. Taking care of yourself is important. But taking care of yourself also includes focusing on your quality of life. As Jacqueline writes, “you’ve got to take a break from the endless hunt for answers and ask yourself, ‘How am I going to handle living with my disease today?’”
For instance, Paolone suggested frequently engaging in activities that make you happy and promote calm. Maybe that includes drawing, baking, being in nature, practicing yoga with friends, penning poetry or playing the piano.
Rethink judgment. Sadly, when you have an invisible illness, you might face judgment from loved ones, colleagues, strangers. Paolone has had to deal with this herself—and she’s realized that a person’s judgmental or critical response is really a reflection of their own discomfort. Maybe they don’t know what to say or do.
If certain people are consistently unsupportive and make disparaging comments, consider spending less time with them. Remember that you get to decide whether your illness is the topic of discussion, Paolone said. “After all, it’s your health, your body and your life, so you get to make these decisions, they don’t.”
Surround yourself with sincere support. Paolone stressed the importance of reaching out to compassionate friends and family, support groups, therapists and empathic doctors. “Having this network of caring individuals around can be instrumental in you feeling better both emotionally and physically with your invisible illness and within yourself.”
Ultimately, do your research, be prepared, and don’t be afraid to speak up with any medical professional. As Jacqueline emphasizes throughout the book, you are the expert on your body, and you know what’s best for you.
Paolone has found it helpful to think of her chronic illness as her new normal. “I may not be able to control all aspects of my health, but I can develop ways to cope so that it does not get the best of me and ruin my day. I am more than this illness and while it is a part of my life, it does not define me as a person or dictate my life path.”