When I read your website, it makes me feel hope. But I have no idea how to bring that hope to the reality that is my life.
In 1998, I began having unusual sinus problems. Congestion followed by drainage followed by congestion, back and forth. It was a strange congestion, like cotton-balls stuffed up my nose. I ignored it as I would a cold and expected it to go away. One morning, after about a month, I awoke and walked down the hallway in what I thought was a straight line only to find myself running into the wall. My hearing seemed blunted and I felt dizzy. I collapsed on the couch as I walked by it.
That day I entered a world I never knew existed. My brain felt swollen and heavy. Lifting my head made me feel as if I would die. I began having muscle tremors all over my body. I felt popping sensations inside my brain.
I went to the doctor and after testing my blood, he diagnosed me with a virus, sent me home and told me to come back in two weeks. Over the next two weeks, getting to the bathroom was like climbing a mountain. I collapsed in exhaustion and muscle tremors from making the trip. I couldn’t bear to be inside my own body because I was in so much agony. Though I wouldn’t describe it as terrible pain, I did feel a gnawing, burning sensation in my head and legs. I awoke one night with my legs seizuring. I called my doctor and he informed me that I would have a chewed up tongue if I had had a seizure and he laughed at me.
Eventually my doctor sent my blood work to a lab that diagnosed me with a reactivated Epstein-Barr infection. Six months into my illness, I was sent to an internist who informed me that there was no such thing as a reactivated Epstein-Barr infection and refused to discuss it with me further. After a few tests, he called me into his office and with great pride, as if he had just conquered a country, announced to me that my symptoms were all psychosomatic. I cried and tried to communicate what I was going through, but he was finished with me.
I was then sent to a hospital counselor who informed me that I was feeling weak in my body because I was feeling weak in my marriage. Since my marriage really wasn’t a good one, I figured I had no option but to get divorced in order to save my life. I wondered if my mind could really make my body so sick. I still suffered great agony just from walking to the bathroom. I noticed my legs no longer felt like my legs. I couldn’t control my muscles very well, and my writing wasn’t the same and it exhausted me to try.
At one point, I begged my doctor to put me in the hospital so I could get some help. That night, I had the seizure in my legs that awoke me from a dead sleep and I called the nurse to my room so she could witness it. The voice on the intercom came back and said, “If you want someone to sit with you, we’ll have to call your family. The nurses here are all busy.” I was so confused by that response I didn’t say anything. Finally a nurse came in and gave me an anti-anxiety pill. She told me I was having a panic attack.
Over the years, I have learned to pace myself to get through each day. I often collapse and I don’t accomplish much. I am on disability. I cannot go anywhere that requires walking or standing without a wheelchair. If I walk any distance I am in intense pain all over and I completely collapse. I’m raising three children. My latest doctor restated what I told him were my symptoms back to me by saying, “You don’t feel like doing what you used to like doing. You need to take an antidepressant.”
I truly believe that because I am a woman, I will never receive any help. I believe most women who have symptoms that are not easily explained will be given antidepressants and sent home. I feel unheard, invalidated and alone.