Maddy and Her Mom’s Experience With ME Chronic Fatigue Syndrome

Both my mother and I were diagnosed with CFS/ME – my mother in 2005 at age 63 and myself in 2011 at age 33. There has been research that points to a genetic component. But until more concrete research is conducted on this illness we will not know whether or not there is tangible truth to this. I was extremely scared when my mother got sick. I felt helpless. How was I supposed to help her when the medical profession could not help her? I saw her struggle to get through each day. Test after test, doctor appointment after doctor appointment — with no concrete answers. Doctors told my mother, that her illness was “not real.”

Then, 7 years later, I was faced with the same challenges. My mother was forced to retire early due to her illness and I had to leave my full-time job. Sadly, I did not receive medical disability because it appears as though CFS/ME is not recognized as a “real” disease. Together, along with our family and friends, my mother and I were left feeling incredibly frustrated. How do we get better? How do we heal physically and emotionally from this? We were lucky to be able to lean on one another for support. We would talk on the phone every day (and still do). We would ask one another “How are you?” “Not great.” We would each respond. And that’s all we would have to say. We didn’t have to say more. We just knew how the other person felt.

While my mother and I have had different symptoms – she has various neurological symptoms among other ailments and I had a low-grade fever for over 7 months among other ailments – we have both shared the debilitating symptom of extreme fatigue in our every day life. I’ve found that it is incredibly hard to understand fatigue unless you have felt it and lived it. It is not the same as being tired from lack of sleep or exhausted after let’s say, a long run or a grueling day at work. To me, fatigue is a feeling much more intense than being tired or exhausted. It is an exhaustion I have never felt. Exhaustion multiplied by 1000. A feeling, that my body was really not working as it should. A feeling, that something was very wrong.

Because fatigue is so hard to understand, I feel the name Chronic Fatigue Syndrome does not serve the illness justice. Plus there are so many individuals diagnosed with this illness that have other symptoms in addition to fatigue like my mother and me. The name just doesn’t make sense. If anything, it is extremely vague and confusing. The name CFS does not give the individuals suffering with this illness the respect that they deserve.

Fortunately, my mother and I are making progress. It is vital that we both stay very focused on finding balance between activity and rest. Every day that I am at my job or walking outside with my husband, I think about all the individuals with CFS/ME who are too unwell to get out of bed. I was one of them. It’s not fair to feel so sick and not be taken seriously. I think the scariest part of my experience was that I wasn’t given a concrete answer from the medical field about what was wrong with me other than that I had an impaired immune system, that I had CFS and that there was nothing they could do to make me better. What happened to my body, my immune system? Why was I so sick for so long? These unanswered questions haunt me every day. How will I know that it won’t happen again? The reality is that I don’t.

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