To the Friends Who Offer ‘Cures’ for My Chronic Illness

Sometimes, a simple chat with my friends and family can turn into a conversation about me defending my health choices. People will insist on telling me ways to boost my immune system. The problem is when you have an autoimmune illness, it’s usually because your immune system is overactive, and I take immunosuppressants to quiet it down so it stops attacking my blood vessels.

Many well-intentioned but insistent “friends” will spend hours talking to me about how I can boost my immune system. They don’t do this out of malice; they do it out of caring. They see me with constant colds or worry about me getting a cold or virus, but they don’t understand that boosting my immune system may put it into overdrive and begin a horrible cycle of flares. (A flare is a reactivation of my illness. I’m never cured — I just hope to keep things quiet throughout my life.) I know suppressing my immune system places me at greater risk for infections, but I live under a no-win situation and sometimes have to pick the lesser of two evils.

I hate to admit it, but I have gone as far as to drop contact with some of these “friends.” I can’t take being told about herbs, meditation, yoga and what they learned on “The Dr. Oz Show” the previous day.

If you’re a true friend of someone with an autoimmune illness, please listen to us and don’t push things on us. We would love a cure. We dream about a cure. We might even do a human sacrifice to the volcano goddess for a cure. Please understand we’ve learned our health is all about maintaining.

Maintaining the best lifestyle we can.

Maintaining the least amount of medications to keep our illness from flaring.

Maintaining the side effects of the medications we have to take.

And maintaining some normalcy in our lives.

Please don’t add to our stress (which can cause flares) by insisting we try your latest find. We know you love us and don’t want us to suffer. We know you just want to help. We know you want us “cured” and back to our old selves. Please understand we would like that, too. We don’t wallow in our diagnosis, and trying to make you feel OK about our chronic and incurable illness can stress us out.

Be our friends by listening without giving us cures, quick fixes or your opinions. Just tell us “I’m here” when we need a cup of tea (or something stronger). Call us when you’re at the grocery store and ask what can you get for us. Just be there for us and don’t abandon us because we have to cancel often. Instead, visit us with takeout food and a movie so we can stay in our pajamas and enjoy some time of not being alone. (OK, and help me fold a load of laundry while you’re here.) Understand I want/need to do things myself but could use company while I do them.

Yes, there are definitely alternative therapies that can lessen the pain, lower the inflammation or just help us along the path of this bumpy journey. But please don’t offer us “cures” or ways to boost our immune systems.

We need our friends to act as friends with open arms. We need people who will listen and won’t try to fix us or cure us. Just be our friends, and we will reward you with our unique sense of humor and newfound view of the world around us.

Follow this journey on Karen in Wonderland.

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