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Invisible illnesses you might not know I had, as I do not let them define me

Posted Sep 15 2010 12:00am


Note: This post will be written, not only for regular readers of this blog, but for newcomers to understand some of how this blog came about.

In 1999, I wrote an article called, "Stuck in a House" and posted it on a website I'd made. I got a lot of comments about that article, which discussed the way an invisible illness had affected my life. I was lucky, too, because through the internet, I'd found other young women who had invisible illnesses much like mine, and several of us formed friendships via email - friendships that lasted for years and kept me going during times of unmitigating pain and loneliness, the times when I felt that nobody understood what I was going through. In honor of Invisible Illness Awareness Week, a few days late, I want to talk about what it's like to have a "stillness" as my old friend called it, that affects your life but isn't obvious or understood by most of the people around you.

When I was 20 years old, I became sick. I didn't have any idea what was wrong with me, but I knew it was something serious, because I felt like I was dying. I had a history of depression, so the first thing any doctor I saw thought was that I was just depressed, and psychosomatic. Then I got diagnosed with Fibromyalgia, which, back then, wasn't understood or well-known at all. I began to read about Fibro and the connected Chronic Fatigue Syndrome, realizing that I had all the symptoms of these conditions. I became unable to work at the library where I shelved books, and had difficulty functioning at all due to the severe exhaustion and physical pain I was in all the time. Nobody around me thought I was really sick. I didn't look sick. That is the comment that always, always comes out when a person has an invisible illness: "But, you don't look sick".

Over the years, my diagnosis changed. I went to every kind of medical specialist there is, and had tons and tons of tests. I was poked and prodded and x-rayed and my diagnosis changed and changed again. Right now, it's thought that I most likely have Mixed Connective Tissue Disease along with the Fibro and Sjogren's Syndrome (an autoimmune disease)along with as arthritis of the cervical spine, an impaired immune system, hypothyroidism, a vestibular disorder, peripheral neuropathy, and other things. In the past, I was told I probably had Lupus, Rheumatoid Arthritis, Osteoporosis, and other things.

Ultimately, though, the diagnosis doesn't really matter. At the end of the day, what matters is how I manage my health problems, whether or not I am getting help for them, and that is basically all. I have long since adjusted to my limitations and am no longer depressed about them. I don't focus on my health problems, and I don't feel debilitated even though there are many things I cannot physically do. I've accepted the situation. One thing I'll never do well, though, is explain this to people. So usually, I don't. I'm silent about a huge part of my life, because I don't want to be looked at as a person acting like a victim, or whining or complaining, or in need of pity. I am not sorry for myself, so I don't want pity, and by the same token, I don't need to prove to anyone else that I have an illness that is real even though they cannot see it.

Some years after I became physically sick, something else changed. I became quite severely mentally ill. I had my history of depression and anorexia before, but those issues were mild in comparison to delusions, hallucinations, and what was eventually diagnosed as Schizophrenia and then Schizoaffective Disorder. This is another illness people can't see. I don't look like I'm mentally ill. I don't normally "look" psychotic, even when I am, except for occasions in the past where I was crying or walking around saying strange things to people in public. People who know me well can tell, sometimes, if I'm psychotic or experiencing a lot of symptoms. But, now, usually people who don't know me well really can't tell. I know a lot of people who do know about my illness because I know them through the National Alliance on Mental Illness (NAMI) and my work as an advocate on the local NAMI consumer council. But at my job, I keep the "schizo" part of my life in the realm of the invisible, because I fear the stigma and discrimination that comes with this illness. And I've gotten to meet many people here at this blog, which gives me the wonderful opportunity to spill my guts about the truth of my situation, and not have to hide it to avoid embarrassment or discrimination.

Sometimes I feel like a fraud, or like a very misunderstood person, since so much of my life is comprised of things I don't discuss with anyone at my workplace. I only work part time, but I see these coworkers regularly and I would like to actually get to know them better, rather than have to pretend that I'm fine all the time. I still have symptoms, though they're managed well with medications, which is why I am able to work at all. I go to school, trying to better myself and to work towards a future when, hopefully, I will be able to manage full-time work. I may get to that future, and I may not. But I do the best I can with the cards that have been dealt to me.

One thing that I can say for sure is: I'm no longer stuck in a house. My physical health, though complicated, is much more manageable now than it was when I was young, confused, and lacking information. My mental health is manageable too, which is something I couldn't say a couple years ago. What I want to do now is work to make invisible illnesses, such as Schizoaffective Disorder, more visible: to educate the public, advocate for better services, and help those in need of information for their own mental health. I am doing this through NAMI, and through speaking at the local Crisis Intervention Team Trainings for police officers in my county, and I'll be speaking at a conference on homelessness next month - talking about my past experiences and the connection between homelessness and mental illness.

I've come a long way, but it will take much more work, not only by people like me, but by everybody who cares about humanity, to make the world a more fair, merciful and knowledgeable place when it comes to dealing with invisible illnesses. They are often misdiagnose, not diagnosed at all, or chalked up to personality deficiencies. Invisible illnesses are actually the most common type of disability there is today in the United States, and we need the medical community to be more educated about them. Disabled people face stigma every day, and people whose disabilities are invisible may face even more, as others do not comprehend their situation. I think the idea of an Invisible Illnesses Awareness Week is great, and I hope that this effort served to educate many folks about these types of illnesses.
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