Alone with Invisible Chronic Illness?

The grocery store is a place I like to be, especially a store packed with fresh, live produce, with good cuts of meat not pre-wrapped in plastic, a grocery store that smells like food and not like (gasp) Febreze or detergent.

But when I was sick with colitis (or IBS, or whatever you want to call it, since doctors don’t seem to agree) a trip to the grocery store almost always included a rush to the bathroom.

And what did I do with my three-year old son? Now many years later, I can’t remember. Probably, to his chagrin, he came to the rest room with me.

These are some of the unseen challenges of what has since been named Invisible Chronic Illness (ICI) – symptoms like the severe chronic pain that comes with fibromyalgia; nausea and cramps with irritable bowel syndrome; fatigue that is the hallmark of chronic fatique syndrome and many other conditions; depression from having to put up with all these things, and the isolation that illness inevitable produces.

So it is surely a blessing for people with ICI that the Internet now offers a forum for interaction with other people contending with similar difficulties that keep them at home and alone.

In September, I listened to some of the speakers at a virtual conference on ICI. You can still hear many of the presentations by visiting the page.  Life Coach Trish Robichaud spoke about her own difficult recovery from heart surgery; she also suffers from multiple sclerosis and chronic depression. Former athlete Tiffany Westrich offered tips for coping with the threat to a person’s sense of identity when you can no longer do the kinds of things that once defined you. Many other talks were offered on various topics connected to coping with life when life becomes transformed by chronic illness.

This morning I’ve been reading some of the blogs that are also available at this heartwarming site created by Lisa Copen, herself a victim of ICI. Lisa has had rheumatoid arthritis (RA) since she was 24 but she manages to raise her son and stay in her marriage, writing books and updating her site(s) at 3 am when she can’t sleep. She has made chronic illness her ministry http://restministries.com/, and through this work she offers tremendous support to people isolated by their health struggles.

And it is surely needed. Isolation, unfortunately, is one of the key difficulties of living with invisible illness, or with any chronic illness for that matter. And when it isn’t apparent that you’re unwell -- when “you look so good,” as friends like to tell you – and people find it hard to believe you are sick, the widening gulf between you augments your sense of separation from the everyday, “normal” world. Some people will even think you are faking it, that you didn’t come in to work because you are lazy; or that you are just plain mentally ill.

This lack of understanding from others is one of the chief challenges faced by the people who write on these pages…that friends, neighbors, co-workers, and folks they meet on the street (when they do manage to get out of the house) don’t understand what’s going on with them.

“Jen” speaks eloquently about this problem in her post “What You Don’t See” at her blog Meditatio: My World As It Is Sung. After running through all the things that may be going on with her when she doesn’t greet you on the street – she has fibromyalgia, which causes terrific pain, and with that comes depression, migraine and IBS – she winds up with this short message: “So please… don’t assume you know what is going on with me or with the average person on the street. Many of us have chronic conditions that we appear to hide well but are still just as real as the ones that manifest outwardly.”

Several people comment to say Wow, who knew, and also, How judgmental we have been! “Stacy” writes, “This post does bring to light the need to be compassionate at all times, no matter what we *think* is happening.”

If there’s a gift hiding behind every dark cloud (and I tend to believe there is!), a message we can receive from the sufferings so many people endure today, inexplicable as it may seem, then perhaps it is that very realization: That the person who snubs us in the grocery store or who explodes in anger over the loss of a parking space or wears sunglasses at night may actually be in need of our compassion, not our judgment, not our wrath.

It’s an important lesson in a wrathful, hostile world, a gift that we may receive in deep gratitude, as we open a door or carry a package for someone who might really appreciate being seen as they cope with one of the most difficult challenges in life, and sadly, one of the most common.

More about ICI in the posts to come. Thanks for reading!