Most people I’ve met don’t need to hear this. They either understand and have empathy for people with serious illnesses or they have one themselves. But a few people need to.
Often, when you have an illness, you have to modify your life somehow. It may not fit “the norm.” (Or what people think is what is “supposed to be.”) I’ll use myself as an example.
I go to bed at about 10:00 p.m. every night. I take a nap every day. Why? Well, because sleep is very important. I’ve been severely sleep deprived in the past, having about 3 hours of sleep each night for about 3 years. It’s not pretty. As I begin to develop healthy habits with the help of my counselor, I’ve taken sleep to be a priority for me.
That’s not all. Under the guidance of my counselor, I’ve decided that employment is not currently for me. Don’t take that to mean I’m lazy or a loser. In fact, I’ve been very career-driven most of my life. Not to brag, but I have accolades and accomplishments galore. It’s just that, as I try to maintain health, I know that juggling employment is not going to work for me. My main goal, after all, is to stay healthy. The less frequent my symptoms are, the better.
A lot of people in the U.S. and around the world do not have the quality care I get. I am very fortunate in that respect. I go to a wonderful mental health facility and see an outstanding counselor. Because of the care I get, I’m learning how to strike a healthy balance with an illness that many see as incurable, severe and incredibly detrimental to the self. The longer I go without experiencing psychosis, the healthier my brain gets. It could be possible to go completely off medication sometime in the future. My counselor and I have discussed people who have done just that. But it would take years of being asymptomatic for me to do that. Asymptomatic is what I aim for.
I hate my illness. It took me several years to accept it. I was angry for having it. I had to go through that stages of grief in order to come to the point where I learned that this is what I have, that my life’s trajectory may not be as I thought it would be, and to switch to a different lifestyle.
I also had to deal with feelings of shame–shame for not being able to work, mostly. I don’t think anyone should feel that kind of shame.
In the end, we play the hand we are dealt. I know that my care team has vast experience and a good track record. I trust them. I have a trusting relationship with them. We have come to the understanding that my life–but not necessarily your life–may be differently structured than what the “ideal” tells us.
Some of you may need to hear this either to accept other people’s lives or to accept your own.