Why I Decided to Make My Invisible Illness a Little More Visible

When my lifelong friend, Tracey, texted me this morning at 6 a.m. that she was struggling with depression, I rang her right away. As we talked, our conversation helped me, too.

Her son had called several times and she’d avoided answering. When she finally picked up, he was upset.  “You’re ignoring me!” he’d said, clearly hurt. So she decided to tell him about her illness. And he was finally able to support her.

Now she’s thinking about telling her colleagues and supervisor. But the idea is clearly hard for her because of the stigma and lack of understanding about this invisible illness. Tracey wonders if people will judge her. Will they think she is somehow less of a person? Will they think she is making it up?

Then she told me she was sorry for the period of time that she thought I wasn’t really debilitated with Lyme disease. She thought then that if only I “tried,” I would be able to work and have a good life. With her own challenge, she now gets it. I know my Lyme is mostly invisible. But have I had a role in that? Yes, definitely. Like Tracey answering the phone only when she felt she could be upbeat, I hid my disability.

A few years back when I was housebound, someone organized casserole deliveries for a woman going through breast cancer treatment. There were none for me. Now I see that I should simply have asked.

People can relate to cancer or a broken leg. They see crutches. The impacts of chemo are widely known. But most people don’t understand other disabling illnesses like depression, anxiety and infections from ticks. They don’t really get fibromyalgia or chronic back pain or migraines.

I wish I had done more to educate friends about how truly awful my life was. Had I asked specifically for help, I know they would have given it. I don’t mean asking someone to be a caretaker. But a lunch or bag of groceries every couple of weeks along with company to break the isolation would have made a world of difference. 

But I didn’t ask. I hid.

A friend would offer to come by and I’d say “another day.” I only let people see me when I was able to at least get dressed. The better days were few, so I often declined visits. Or canceled if I suddenly went downhill. Many people gave up and stopped calling. They had no idea I was trapped in bed or on my sofa. Because I didn’t let them in.

I rarely explained how even on a day when I could get dressed, I barely was able to put on my pants and shirt before I had to collapse on the bed. And that was a better day. I should have let them see me at my worst.

As the saying goes, “Seeing is believing.”

But I was afraid to let people know that I was less than whole. Instead, I developed solo coping strategies. Like getting just a few items when I could get to the store, so I could walk less and check out faster. I pushed to take care of myself, sucking energy away from recovery.

I can’t believe that I only started using the electric scooter recently. Before that, I’d even had to leave my basket and flee at times because otherwise I was going to collapse in the checkout line! I wish I’d understood far sooner how liberating and fabulous it feels to ride that red machine. Why was I so proud? How many of us feel this way? 

Sure, some people — maybe a lot of people — won’t get it even if we paint the best picture in the world. But explaining is a start. And letting them see us at our very worst — bedridden or struggling to walk even with a cane or unable to fix a simply bowl of oatmeal — will speak more authentically than any verbal description.

Asking for specific favors, like a meal or an errand or company, makes a world of difference. I know because I’ve finally learned to do it. A lot of people want to help, but just don’t know how.

In this season of renewal, I’m going to continue my newfound openness. And Tracey’s going to show her depression at work instead of trying to disguise it. Even if just one person offers some understanding and help, that’s way better than none. 

Just think: If we can make our invisible illnesses a little more visible, we’ll not only be giving ourselves a great gift this holiday season, we’ll be contributing to a greater understanding for those who come after us. What an wonderful and enduring gift that would be.   

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