Personal Story: Alison Futterman

CFS continually shifts and shapes Allison Futterman’s world as she redefines her approach to living.

A Life in Flux
by Allison Futterman

It was a day I’ll never forget. It was my first week at a great new job. My boss was in my office discussing a project when I suddenly felt like a truck hit me. I was weak, dizzy, achy, nauseous and feverish. It felt similar to the onset to the flu, but exceedingly more intense. Quite an inauspicious start to a new job.

I drove home in a fog and got into bed the second I could. 
I was glued to my bed for the next several days. Of course, this was the beginning of my chronic fatigue syndrome (CFS), although I was unaware of it at the time. The doctor thought I had a virus that would resolve itself soon. I didn’t know if it was a virus, but I had a gut feeling that it wasn’t going to resolve itself anytime soon. What I had no way of knowing was that I was beginning a journey of chronic illness and a spiraling decline in health that I would still be dealing with more than five years later.

I tried to go back to work, but couldn’t put in normal hours. I had to come in late, leave early or not make it in at all. And although my employer tried to work within the limits of my situation, the reality was that they needed a full-time employee. Like so many of us with CFS, I became unable to support myself and eventually had to go on disability.

Also common to many CFS sufferers, the illness struck in the prime of my life. At the time, I was 30 years old, living and working in Los Angeles and enjoying a happy and normal social life, dating and day-to-day living. The past five-plus years of illness have taken a toll on every conceivable aspect of my life—and some I never could have imagined.  The slow and insidious encroachment of sickness into my physical, emotional and mental health has gradually robbed me of much of my independence.

The sicker I grew, the less self-sufficient I became. Instead of living independently, I had to move in with my mother as I became incapable of fully caring for myself.  To go from being an independent woman to being reliant on someone else is devastating and brings about incalculable feelings of frustration and humiliation.

The capricious nature of CFS is particularly exasperating. My CFS has evolved to include a vast array of symptoms: pain, migraines, neurological problems and more. It’s a daily struggle to cope with the manifestations of my illness. Physically, the level of intensity of sickness and pain varies from day to day, hour to hour. Having normalcy in my life is nearly impossible because I go from functioning reasonably well one moment to feeling deathly ill the next. I can literally feel the disease coursing through my veins. It’s a visceral feeling that resonates down to my very soul. There have been nights when I’ve had serious doubt about whether or not I would make it through until morning (and times when I didn’t care if I did). It’s no surprise to me that researchers have assessed the degree of sickness a CFS patient feels in a major flare-up to being equivalent to multiple sclerosis, end-stage renal failure and AIDS.

The social ramifications of CFS are innumerable. In the beginning, family and friends were concerned. But over time, people don’t or can’t understand the full scope of what CFS entails. They believe it’s the same as having a cold or the flu and that you’ll get “better” or “over it.” People get frustrated that you aren’t better after what they consider an adequate amount of time. They don’t grasp the concept of chronic fatigue syndrome actually being a chronic illness.

Most people in my life grew frustrated with my lack of improvement and started to distance themselves. A couple of people made an effort to learn about CFS—what it is, what it does to a person’s state of health and how it can disrupt and damage a life. But it was (and still is) enormously hurtful to me that there were people I thought truly cared about me who were not willing or able to offer emotional support. I’m not bitter about it, but I am tremendously disappointed.

As for the other social implications, it’s nearly impossible to have a social life when planning is so difficult to do. People get annoyed when I continually have to cancel plans. As for dating . . . well, let’s just say illness isn’t exactly a turn on. Of course, I thought I’d be married with a family by now, but that was a dream I had to let go of as my illness progressed.

Countless people have told me I should be glad that I don’t have cancer. Obviously, I’m aware of the great suffering of other people and grateful for the blessings I have. But gratitude for the problem one does not have is not a form of escapism from the infirmity one does have.

Part of the problem is that I (and others with CFS) don’t look “sick.” I think I speak for many of us when I say that we try our best to fake it, to act as “normal” as possible. We don’t want to come across as weak or complaining, especially about something nobody sees or believes. Personally, I hate to draw attention to myself or my circumstances, so I try my best to be as unassuming and inconspicuous as possible. But even though the suffering caused by CFS may not be easily perceptible to others, it’s exceedingly real to the person who has it.

To make matters worse, the medical community seems largely ignorant about the illness. This is such a hurdle for people such as me. I feel as if I’ve gone to medical school after all the literature I’ve read. But no physician wants a patient to explain about epidemiology, cytokines, natural killer cells or interleukins. I only wish they could see firsthand the impact CFS has on my quality of life. The past few years, I have been largely confined to home. My outings usually consist of doctors’ appointments and the occasional Emergency Room visit. For me, it’s a truly good day if I can get to Starbucks for half an hour. Having this illness requires an enormous amount of adaptability.  I have learned to be amenable to the relentless changes in how I feel on a daily, even hourly or momentary basis. CFS is only predictable in its randomness.

I always heard that life doesn’t always go according to plan. Getting sick has personalized that concept into a reality. There are undisputedly negative consequences of any chronic illness. However, I choose not to be defined by that negativity. True, I have challenges that can be overwhelming at times. There are times of frustration, sadness and fear. There is now a “new normal” that is constantly changing. But I refuse to go through this experience without finding something positive about it. 

I discovered that I possessed inner strength I never could have imagined. A person never knows if she can rise to a challenge until she is tested. I now realize that success comes in many forms. Striving to remain positive and sustain a sense of purpose in the face of adversity is success on a different level. I’ll continue to work within the confines of my illness to find a decent quality of life, as challenging as that may be. Dreams, goals and plans have changed but they are still there. The ability to maintain hope is all I need.

Originally from New York, Allison Futterman lived for several years in Los Angeles, where she worked in product development.  At the ago of 30, she was diagnosed with CFS and eventually had to stop working due to her illness.  She now resides in Charlotte, North Carolina, where she is pursuing a freelance writing career.