The Importance of Having a Supportive Family When Living With Chronic Illness

Four years ago, when I was diagnosed with a relatively rare inflammatory disease called sarcoidosis, I did what many people do. I threw myself into learning as much as I could about what I had and the treatments available.

In addition to reading medical reports, I also reached out to sarcoidosis groups on social media. It is one thing to hear what the doctors say, it is another to learn from other people with the same disease.

It did not take me long to realize that compared to many others with sarcoidosis, I was very much blessed. I do not mean because my symptoms are less severe or I have a better prognosis. Rather, I discovered how fortunate I am to have a supportive family.

 

I have heard story after story, not just of people with sarcoidosis, but those with other chronic illnesses, of people who experience conflict with family.

This is especially true of “invisible” illnesses, where the person looks healthy and able on the outside, but is struggling with pain or fatigue or both on the inside. Unless you have a chronic illness, you don’t know how difficult it is to live a “normal” life.

I have heard stories of people who have been severely criticized by spouses, parents and in-laws for their lack of activity. People who are not able to work or can only work part-time are often looked down on as lazy or unmotivated.

Thankfully, this has not been my experience. It was my father-in-law who took me to the hospital and demanded that the doctors find out what was wrong with me. All of my in-laws have been very supportive.

My wife has been my rock during my chronic illness. Perhaps because she struggles with mental illness, she understands the limitations that exist even when things look fine on the outside. There were times, especially in the early days of my illness, where I was not able to work as much as I wanted. She did not reject me as lazy. In fact, she is often the one to make me slow down when my sarcoidosis is acting up.

Even my young children have been supportive. My son loved it when I was in the army reserves because of the military gear I had. But he understood when I had to release from the army. My daughters wish I could jump on the trampoline with them but they don’t make me feel guilty when I can’t.

My observation from my years with chronic illness is that a supportive family is key. If your family sees you as faking illness or pretending to be tired, it is so difficult to make it through the day. But a family that accepts you with all your limitations can help you lead as normal a life as possible.

Today, I’m able to work full-time and do most of the things I want. And yet, I know if my health turned, my family would still be there to support me.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Liderina.