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6 Ways to Build New Support When Facing an Invisible Disability

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Battling an invisible disability, especially for an ongoing period of time, can bring about many losses, limitations and changes none of us would choose to face.

It can be even harder to bear the adjustments when friends and family don’t seem to understand what we’re going through or why the condition isn’t getting better.

Sadly, because of this lack of understanding, many relationships can be broken. Frankly, sometimes loved ones don’t really want to work at it. Watching us hurt may be too painful, or they simply don’t know what to say.

Most of us are accustomed to relying on loved ones, work and hobbies to keep us active socially. When those aspects in our lives dwindle down or disappear, we’re left with a dilapidated infrastructure.

Here are six ways to build a new foundation of support and purpose when facing an invisible illness:

1. Loved ones

Friends and family may try to be supportive by saying things they believe will encourage us to fight harder. But it can be hurtful when they say things like, “But you look good” or “Can’t you just try harder?” These kinds of statements can leave us feeling as if they have no idea how hard we are fighting and how much we want our lives back. Subsequently, loved ones may avoid us to avoid confrontation or take our saying “no” to a holiday dinner personally. Inadvertently, we become “out of sight, out of mind.” No matter what the reasons, we oftentimes feel misunderstood, abandoned and forgotten. Sometimes we have to work at keeping those not-so-perfect relationships. Other times, we need to move on and find new relationships.

2. Medical teams

For many people living with chronic illnesses, tests, doctor appointments and treatments can be a routine part of our lives. Therefore, it’s extremely important to build a great team of doctors, counselors and/or practitioners who care enough to listen and are capable of digging deeper into our case.   

3. Social support

Finding a social outlet is crucial to combating loneliness. This can be found through a community center, club, church or support group where we can meet others facing similar challenges. Of course, it can be extremely difficult for some people to get out and about. So we can find ways that work for us, such as an online support group.

4. Purpose and passion

We must remember that even without our careers or other things we have lost that gave us identity, we all have purpose and value. Therefore, we must grasp onto knowing that no matter what, our lives have meaning. To find our passion, sometimes we have to pull out an old hobby or create a new one such as artwork, crafts or writing. We can also find gratification in reaching out to others or volunteering. Even if we can’t get out of our homes to help in a local soup kitchen, we can send encouraging notes in the mail, email, social media or in an online support group. Who we are is what we enjoy, what we believe and how we love. Although how we express it can be limited, it can’t be taken away.

5. Healthy living

Many people don’t think twice about the environment around us. Yet, it’s important for us to do our best to rid our homes and bodies of unnecessary chemicals. We can also seek out a healthy diet and nutritional plan, as well as address hidden food sensitivities, allergies or vitamin deficiencies. Being intentional about watching and listening to encouraging or funny things is another helpful strategy. Hope and laughter is good for the soul and the body. These things may not cure us, but we are giving our bodies the best fighting chance for optimum health.

6. Advocacy

Get involved in a nonprofit organization that speaks to your challenges. Support their cause. Tell others about their website and resources. Participate in their special projects.

2015 Invisible Disabilities Week, sponsored by the Invisible Disabilities Association, is a great way to get involved. The world-wide campaign for people living with illness, pain and injury takes place on Oct. 18-24.

There will be a week of activities, and people can participate online. People will have the opportunity to share their stories, as well as spread awareness, education and support through photos, videos and memes. This social media campaign will be on Facebook, Twitter and Instagram. Join us and see details at

Follow this journey on

Lead photo source: Thinkstock Images

Originally published: October 19, 2015
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