For most of 2017, I had to struggle to accept the fact that I might have breast cancer. (I have one final test in February, but everything is finally looking good and that I mostly like don’t have it). All the anxiously waiting for results during that time forced me to look at the treatments for breast cancer and prepare myself for the worst. I read about lumpectomies, chemo., radiation, and various other therapies. I know women who have gone through all of these things. I read the stories of writers. I was nervous. I was anxious. I was scared, but one thing I knew for certain was that some things would be much easier with cancer than schizophrenia.
If I receive the diagnosis of breast cancer, I can expect food from friends, and our church family. I can expect that people will send cards and flowers, and call me, and contact me regularly on social media. Not only that, I can expect to see millions of people buy pink ribbons, wear t-shirts, post a pink ribbon on social media, walk in 5-K races and write checks to the Susan B Komen Foundation. (I discovered this charity is not always popular among survivors because of the reportedly high salaries of top executives). Nonetheless, I would see people from everywhere in the country rally around the illness I was facing. I would also have many women to talk to who have been through it; I know at least a dozen.
Schizophrenia is a lonely disease. There is a Schizophrenia Awareness day, but hardly anyone mentions it (the past one, I think I saw two or three references to it on social media). It doesn’t get put on Facebook’s radar like cancer. At certain times a year, you can choose a pink ribbon banner for your profile. On those days, Facebook is awash in pink. There are also games women play on Facebook to raise cancer awareness. They secretly send each other messages and ask what color of bra the recipient of the message is wearing and ask her to post that color, without explanation as a status update (there are variations of this game). (Activists have criticized these games, created to raise awareness, for allowing people to believe they are doing something to wipe out or educate about cancer when in reality, writing a check supporting research or education is far more productive and helpful).
There are hundreds of ways to show support for breast cancer (not that it makes it any less terrifying or the treatments any easier), but it does do one thing, it makes a person feel important – the struggle is real and the struggle matters to millions of people.
With schizophrenia, there is the illness and all that entails. There is the toll that that illness takes on the person who has it, and on their loved ones, and then added or piled on top of that is the struggle to be seen or heard, or taken seriously or cared for – none of those things are a given. Families often have to fight for their loved ones, and it may very well be that they feel as if they are the only ones fighting.
I know that when I was psychotic the last time (for six whole months), my husband was on his own. He had to work his way through a maze of illness by himself without any support. I have read many family stories of people desperately trying to get their loved one treatment but running into problems and roadblocks time and time again. There are few, if any, safety nets. There are no public campaigns that get wide spread attention and support.
We are not a huge group, but our numbers are significant. Those with schizophrenia are some of the most forgotten and vulnerable in our society. Having this illness can feel like you are floating in a small rubber boat in a vast ocean.
If you can raise awareness, if you can send a friend or family a card, or make a phone call, please do it. The isolation, grief, and loneliness can be overwhelming, and your concern and compassion can be the fuel that keeps people doing all they can to survive, or help a loved one do so.