Coming to Terms with a Life I Didn’t Plan 

By Patti Schmidt

Note: Guest author Patti Schmidt is a CFIDS patient and former member of the CFIDS Association of America's Board of Directors. She also founded CFS-FM_INFO, an electronic resource guide, and co-founded the Greater Philadelphia CFIDS Alliance. This article uses material that appeared previously in the CFIDS Chronicle, the magazine of the CFIDS Association of America. 

Normally, the thought of overcoming obstacles is not abhorrent to me. In fact, I usually enjoy it. In my pre-CFIDS life as a newspaper editor, obstacles to getting the story were a simple fact of life. I did whatever was necessary — work overtime, spend money or resources, try a different game plan — and something I tried almost always worked.

The Challenge of CFIDS

But with CFIDS, I found myself with something I could not “work” around. I couldn’t pretend CFIDS wasn’t there. I couldn’t shed it like an old skin. I couldn’t even work harder to overcome it. In fact, working harder is exactly what I shouldn’t be doing.

Which is why this thing is impossible to “overcome.” I found myself searching desperately instead for a way to live with this illness. How do you learn to live with something that robs you of everything you hold dear? How do you reconcile yourself to a life you didn’t plan? The answer is: it ain’t easy, my friend. There is no shortcut to acceptance. Each of us has to do this the hard way.

I went through the just-realized-this-isn’t-going-away stage. Before that, I was at the I’ll-be-back-to-work-in-no-time phase. I think I’m headed into the Godallmighty-I’m-mad phase, followed by the guess-I’ll-live-with-it-after-all phase. This follows Elizabeth Kubler-Ross’ four-stage process of grieving quite nicely — denial, bargaining, anger, acceptance.

And we do each have to go through a grieving process for what we’ve lost because of CFIDS: our jobs, our healthy selves, our dreams of what we thought our lives would be. We have to mourn our losses before we can fully accept the limitations CFIDS places on us. I think I’ve finally figured out that emotional milestones are not easily won. You proceed through the process a little bruised, a little unsure of yourself.

My personal battle has had two separate parts. First, my rational self began the process of realizing that CFIDS had changed my life irrevocably. That self fired off letters to senators, wrote columns about CFIDS and dutifully took her medicine every day.  That self spent countless hours educating herself about CFIDS. That self can calmly recognize when she’s done too much and when she needs to rest. That self doesn’t deal in wishes and dreams and what-ifs.

But my child-like, emotional self was another thing entirely. She spent months alternately denying, pouting, screaming silently and making a nuisance of herself. She couldn’t seem to get it through her head that she was no longer who she was before CFIDS and that everything is different now. She kept stomping her foot and demanding to know why we can’t go back to our old life, which we liked just fine, thank you very much. Worst of all, she couldn’t answer the question: Now what?

So I figured out this much: To go on with my life, I needed the answer to that question.

And since I had already spent several months “stuck” in this phase of struggling to accept CFIDS, I decided that I needed some counseling to help me sort out that answer. I needed someone to help me understand how I could carve out a life that I want to live despite this illness.

That was not an easy admission to make. I would have liked to be able to “handle this” by myself. But a few brief sessions (three actually) with a psychologist helped me understand which issues were a problem for me, which in turn made it easier to deal with me.

For me, the most valuable thing about seeing a counselor was what led up to it —I had to think long and hard about what I would say once I got there. Thinking about how to articulate the problem made me ask myself some tough questions. How do I feel about CFIDS and its effects on my life? Am I angry? Sad? Has CFIDS ruined my life? Am I handling this badly? Do I try to “tough it out” too often? Why does it matter so much to me that this illness be “legitimized?” What have I done so far to come to terms with this illness? what if I’m like this for the rest of my life? How has this illness affected the people I care about and their relationship with me?

What I Learned

The valuable lessons I learned in counseling weren’t earth-shattering. Most of what helped was the realization that all of the important stuff in my life was still there. Despite CFIDS, the things that are important to me — my relationship with my husband, kids and family, and my ability to contribute something to the world — are still satisfying. Despite CFIDS, I am a relatively happy person. I’ve decided CFIDS hasn’t “ruined” my life so much as changed it profoundly.

I learned very quickly that I was sometimes my own worst enemy. For instance, I was overly concerned and terribly unhappy about the weight gain CFIDS meant for me. Since exercise makes me relapse, and I eat a relatively healthy diet, my counselor helped me realize that there’s little I can do to change my weight. It’s simply something I will have to adjust to. So now I try to remind myself often that I’m not a bad person just because I’m chubbier than I used to be.

I was also berating myself and feeling guilty about all the things I could no longer do routinely — cook, clean up, enjoy hobbies or sports or fun outings. I worried that my husband was getting the end of a very pointy stick — wasn’t I a drag? Wasn’t he sick of doing all the work? Didn’t he wish he had a healthy wife? How awful is this for him?

When my husband and I talked about these issues, he pointed out something very valuable to me: If the situation were reversed, would I still love him, he asked. Of course, I said, stung he’d even asked the question.  Then I realized: I was assuming the worst of him when I assumed he’d love me less because I’m sick.

Then we talked about what bothered him most about my being sick and his responses surprised me — an always-messy house, a lousy social life and my tendency to overdo and then relapse. Now we simply look for things to do that aren’t tiring, like movies, going to museums (we bring the wheelchair for me) and going for long drives together.  We got a cleaning service to come in every other week, making the house livable again. And I vowed to work on resting and not overdoing it. It’s made a small but significant difference. We feel like we’re “handling” it. And, hey, life isn’t so bad! The best part: I don't think often about this stuff anymore.

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