The Invisible Anchor: The Coming of Age Story of a Young Girl With an Invisible Illness

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September 4, 2012 by admin  
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Sherry Reina Hochbaum

To me, an invisible illness or disability is one that can’t be noticed easily. It can be psychological or physical, it can take many shapes and forms. I have multiple invisible illnesses, and other than them being problems themselves, I also deal with many repercussions because of them being invisible.

This story is about my general progression and hardships through life with an anchor of invisible illness dragging me down.

I didn’t start presenting symptoms of anything until I was 10 years old. At that time I started developing back pain and ADD (Attention Deficit Disorder.) By the time I was 12, I was severely depressed, suicidal, an insomniac, and suffering with chronic pain and chronic fatigue.

By the time I was 16, all of the previous symptoms mentioned had worsened, I had developed Reynaud’s Phenomenon, a circulatory issue, my immune system was weak and I got sick easily and the illnesses hit me harder, and I also had daily fevers that ran my temperature so high I was exhausted and could barely do anything past 12 PM.

People thought I was making it up

The biggest problem with my illness was that there were no visibly physical signs. Other than looking tired, nobody could really tell that there was anything wrong with me. When I was 10 I had begun to see a psychiatrist. By the time I was 15 I was on over 11 different psychological medications for various things and was quite ill.

I saw a slew of doctors over the years. There were no signs that there was something wrong with me in my blood tests, urine samples, physically–nothing–other than my word. Many doctors informed my mother that it was psychological, or that I was asking for attention. Eventually, my mother, against what her heart told her, began to believe that the doctors were correct. She didn’t know what else to do.

At this point in school, I had one friend. I could barely attend school, I was miserable all the time. I had actually begun to believe what the psychiatrists had told me: that I was essentially crazy, that I was making my illness up, that I was desperate for attention.

And then a teacher believed me. . .

Finally, the first person in my life who truly believed I was ill appeared. He was a teacher, and he changed my life and helped give me the courage to keep believing that I was not crazy, and I did, in fact, have an illness.

When I was 16, my brother was diagnosed with an autoimmune disease. I won’t go into details there because that is his personal and private information. It was then that we realized that autoimmune diseases ran in the family: my father had one and my grandmother had one, as well.

Autoimmune diseases are a funny thing. It is theorized that while they are genetic, it doesn’t work like most other genetic illnesses work. It means that you have a susceptibility to an autoimmune disease, but not the particular one that your predecessors had, although in certain circumstances that can be more likely (for example, Lupus.)

My mom helps me again

Finally, after what unfortunately happened to my brother, my mother finally picked right back up and started taking me to doctor after doctor again. Eventually, we found one who heard my story, and believed me. Furthermore, he found proof.

It was barely any proof at all, but enough to know that something just wasn’t right with me. Multiple things had come back with positive during rheumatological blood tests. Not enough to categorize my symptoms as a specific illness, however.

The first thing my mother and I did was immediately change all of my doctors. I got a new Psychiatrist, Psychologist, and PCP. I got off all of the psychological drugs except for one antidepressant. I got on drugs to prevent what they thought could possibly happen to me in the future: Lupus.

My final diagnosis?

As it turns out, I have a mishmash of different illnesses. It is similar to if you stuck your hand into a mixture of different autoimmune disease symptoms and grabbed some. A lot of symptoms I have are similar to Lupus, though. On top of my illness, which they have dubbed “undifferentiated connective tissue disease,” I have fibromyalgia, insomnia, and chronic fatigue, among others.

I will not say that my path since then has been easy. I barely scraped through high school, and I had to drop out of college twice before the first semester finished because I got sick. I took a long break and my symptoms began to worsen.

After an incident where I got very sick finally landed me in the hospital, at 19 years old, the doctor told me that I needed to do something about my life, and now was the time that I could change it or, essentially, choose to waste away. I took a stand and decided I would do something: I went to a rehab center for Pain Management for about 6 weeks.

I turned my life around

I am currently in college, and have finally finished my freshman year. At the age of 23, I have proudly just started my sophomore year and am no longer ashamed of myself and where I am in life. I am not taking any antidepressants and it was proven that my mood is actually dependent upon my physical well being.

It is not a cakewalk; every day is a chore. Each day presents itself seeming like the hardest thing I will ever have to do. Even worse, my illness seems to keep progressing, as my pain has steadily increased. Still, though, I will continue to fight as hard as I can to lead the life that I want to lead, because the alternative is wasting away in my own misery. The burden I carry, the anchor dragging me down, can be held up with enough inner strength and determination.

Sherry Reina Hochbaum is a 23-year-old photography student at Pratt Institute, as well as an artist, a gamer, a sci-fi nerd, and many more things. This is the first part in a series of her current blogging attempts at explaining her invisible illness and things that affect her because of it.

You can see more at reispeaks.tumblr.com/ or her photography portfolio can be seen at reinah.com.

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