Living with an Invisible Illness

Reviewed by: HU Medical Review Board | Last reviewed: June 2018

Some ailments are visible, such as a broken leg. When you see an individual with a broken leg in a cast or other device designed to heal their bones, you immediately know they are struggling. You can see their pain and know that they are not at their best. However, other conditions, such as endometriosis, may be classified as being invisible. This means, that unlike a broken leg, it isn't always possible to see at first glance that a person with endometriosis has a chronic condition. Additionally, although endometriosis is a chronic condition, an individual may not be at their worst all of the time. It's possible to have fluctuating symptoms that lead to times of relief intertwined with times of severe symptoms, and all severities of symptoms in between. It is hard to tell how an individual with endometriosis is doing just by looking at them, and oftentimes, they may look completely healthy. This is the cornerstone of an invisible illness.

Coping with an invisible illness

Coping with an invisible illness can be especially frustrating when those closest to you don't see or understand what you're going through. Others without the condition may not comprehend what you're feeling and may not see when you need support. These times can be isolating and cause feelings of distress. Although life with an invisible illness has its challenges, there are tactics that may help an individual cope, including several of the options below.

Trust yourself

When coping with an invisible illness, it's important to trust yourself and what you're feeling. You know what your body needs and when things aren't right. The experiences you are having are valid and real, and it's important to remind yourself that your perception is, in fact, your reality. It's easy to feel conflicted or guilty when you're in pain and a loved one says to you, "But you don't look sick." As hurtful and frustrating as these situations may be, trusting yourself and what you know your body is going through may make all the difference in drowning out other sources of negativity or questioning.

Find the right words and be prepared

Many friends and family members will have no personal experience with living with an invisible illness, and as such, they may not understand what you're battling. Sometimes, describing endometriosis pain and other symptoms may take a bit of creativity. Speaking candidly and openly with those you feel comfortable with may help promote understanding. Telling a close friend about a personal struggle you've had with pelvic pain or pain during sex may help them experience some clarity on how frustrating this situation is for you. If you're not comfortable sharing these details of your life with those around you, it may be helpful to create your own set of creative analogies for what you're going through. Perhaps someone close to you is an avid golfer and hurt their back, preventing them from playing golf for two weeks. Creating an analogy between the frustration they felt during that time to the pain you're currently feeling that is preventing you from doing something fun may help them better understand.

Preparing commonly understood analogies to your experiences with endometriosis, as well as potentially having personal examples on hand, may help you explain life with endometriosis to those around you. However, it's important to remember that even the most thought out words might not lead to a complete understanding. If this happens, it may be a good idea to reach out to those in your network who do understand, and who can provide you with the support that you need. In some cases, this understanding may come from in-person support groups or online communities like this one.

Engage with others with endometriosis

As mentioned, support groups, whether they are online or in-person, can be an asset when coping with endometriosis or another invisible illness. Surrounding yourself with individuals who are also living with the condition every day can provide a comforting and safe environment. Also, those in your support group may be able to help you craft strategies for helping others around you understand what you're going through. Your support group members may also be able to help you find information that you can present to others around you to help educate them on your condition and what you're experiencing. In some cases, intimate partners, family members, or close friends may be invited to join in a support group discussion and have their questions answered, too. Your provider may be able to recommend an in-person support group in your area if you are interested.

Finding a community who understands what you're going through and can help you navigate the experiences, symptoms, and treatments you are undergoing can make you feel more prepared and supported. This may also promote strong mental health, reduce stress, and help you take on whatever challenge comes next.

Find healthy outlets to channel frustration

Despite best efforts, coping with an invisible illness can still be an uphill battle. You may feel unfulfilled or not listened to by your network at times. Other times you may want to handle a specific situation on your own or have some reflection and time to yourself. In these situations, practicing a healthy hobby or activity that reduces stress and makes you happy may be helpful. Common activities that promote mindfulness and reduce stress include yoga, coloring, crafting, meditation, taking relaxing walks outside, dancing, swimming, and more. Finding an activity that you enjoy and can turn to, even when you're not feeling your best, can help you refocus and reset to continue on your journey.

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