What’s more, it can be even harder to bear the adjustments when friends and family don’t seem to understand what we are going through or why the condition isn’t getting better.
Sadly, because of this lack of understanding, many relationships are 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.
Since 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 are left with a dilapidated infrastructure. As a result, we must learn to be intentional about building a new foundation of support and purpose.
Here are a few building blocks I have discovered that are essential for us to embed into the groundwork of who we are and in our support community:
- Loved Ones – Friends and family often try to be supportive by saying things they believe will encourage us to fight harder. Grievously, it can be hurtful when they say things such as, “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, take our saying “no” to a holiday dinner personally or 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 relationships that aren’t perfect, but they are trying. Other times, we need to move on and find new relationships.
- Medical Teams – Unfortunately, for many living with chronic illness, our worlds become full of tests, doctor appointments and treatments. Therefore, it is 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.
- 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 who are facing similar life hardships. Of course, for many it is extremely difficult to get out and about. Thus, we can find ways that work for us, such as an online support group.
- 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; we 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, by email, on 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.
- Healthy Living – Many people don’t think twice about the environment around us. Yet, it is important for us to do our best to rid our homes and bodies of unnecessary chemicals such as synthetically fragranced products, air fresheners and harsh cleaners. 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 things that are encouraging or funny is another helpful strategy. Hope and laughter is good for the soul and the body. These things may not cure us, but we our giving our bodies the best fighting chance for optimum health.
- Be An Advocate – Get involved in a non-profit organization that speaks to your fight. Support their cause. Tell others about their website and resources. Participate in their special projects.
2015 Invisible Disabilities Week:
One great opportunity to get involved is the 2015 Invisible Disabilities Week October 18-24. It is a world-wide campaign for people living with illness, pain and injury, sponsored by the Invisible Disabilities Association.
There will be a week of activities people can participate in online! Participants will have the opportunity to share their stories, as well as spread awareness, education and support through photos, videos and MEME’s. This social media campaign will be on Facebook, Twitter and Instagram! Join us and see details at: InvisibleDisabilitiesWeek.org.
Sherri’s blog was published on The Mighty on 10/19/15. Some changes to the article on The Mighty were made by the editors. Main photo source: Thinkstock.