I read with interest your recent advice to a woman struggling with CFS and with the people trying to "help" her. I also struggle with a chronic illness, bipolar disorder, and have heard from friends and strangers that I am "making it up" or "being dramatic." Sadly, I have had to let go of some relationships because while I know I have this illness, it was very tempting to listen to these friends and stop taking my medicine.
Ah ... my medicine. As you may or may not know, psychiatric drugs are the pits. A mixed blessing indeed. While they eliminate the hallucinations, reckless behavior and unbelievable rages, most of them include side effects such as rapid and significant weight gain, short-term memory loss, sedation and cognitive slowness. Contrasted with my formerly manic self -- full of energy and creativity, quick-thinking and charismatic -- being on these drugs is torture. It feels like I have willfully bundled myself in wool and climbed into a dark and stuffy closet. There are two parts of this distress: dealing with the side effects and saying goodbye to my "real self." Losing my "real self" was what upset my friends so much. They really didn't like the new me. The healthy me.
So, I am filled with a sense of indignation and anger. I am disciplining myself to take drugs I don't want, going to therapy every week, keeping a mood log, and engaging in a number of behaviors that interfere with my life-as-I-would-like-it-to-be in order to stay healthy. This means going to bed on a regular schedule (rather than staying up with friends over dinner), limiting alcohol (rather than going to happy hour), meditating, exercising and more. Now, these behaviors are having a positive impact on my life in a number of ways and I am not sorry to be working so hard. I'm proud of myself. What is burning me up a bit is that I get no recognition for all this hard work and, in fact, many people try to undermine it.
I sound like a brat, I know. But if I were training for a marathon I would not be working any harder and everyone would be praising me and helping me. But with this, people question my diagnosis and assume that taking my drugs fixes everything. Because of where I live (tiny town where I have few strong ties) and my job (which involves building relationships with mostly conservative, rich people), I am not entirely out of the closet with this illness. Which also drives me nuts.
I guess I just want someone to say, "Great job! Look how strong you are getting! I know it must be tough!" instead of saying, "Why are you cutting the evening short? Why can't you have a drink with us? Why can't you remember what I told you a week ago?" I want to stop feeling isolated in this difficult place where it seems like no one understands and no one wants to.
Can you give me another perspective? One that might help me be less angry? I am hoping that seeing a larger context will lessen these somewhat self-centered feelings of hurt and disappointment.
I think what we are talking about is sacrifice. We are talking about sacrifice and loss. We are talking about choice and character and judgment.
You have chosen to seek treatment. Your hope is that if you follow the treatment regimen your life will be better. So far the treatment seems to work but it has side effects. It is not an escape from life or responsibility or choice; it is a treatment with side effects.
Are the side effects worth it?
It may feel like these drugs rob you of personhood. Yet you retain the right to stop taking the drugs. You have the right to choose.
You have chosen this and are seeing it through. Good for you. I'm not saying "good for you" because you are following society's mandates but because you have made a difficult moral choice.
Taking these drugs is a sacrifice. It is an act of the moral imagination.
Sacrifice calls for mourning. When I stopped drinking it was a sacrifice. I lost a lot but what I gained was a life. I might be dead now if I hadn't stopped drinking.
You know what would likely happen if you stopped taking the medications. You would be OK for a time and then you would be off on a spree again. Then you would collapse into that bleak, intolerable darkness you know so well. You have chosen to avoid that.
So you live without those glorious high times. You sacrificed them because you have a moral heart. You know that to enjoy those high times again you would have to lie to yourself and to others and you've decided not to do that. To enjoy those high times again you would have to pretend that the crash is not so bad, when you know how bad it really is. You would also have to pretend that the damage you do to others is somehow excusable. But it really isn't.
So you're doing the right thing but it is hard and very few people congratulate you. You're not hitting home runs for the Giants or doing special effects for Pixar so they don't get it. You can try to educate them but good luck.
Your struggle is real. But not everyone can see that. Your victory is largely private. At times, that will have to suffice.
The dire truth is that you get to survive. You don't get locked up in a madhouse or in prison, or turned out on the streets. You don't have to see your life fall apart.
Mainly you get to survive.
As I read this over, it sounds harsh. I do want to cheer you on. I do want to congratulate you. I also want to acknowledge that life is hard. We lose things. Maybe one reason this sounds harsh is that I have had a big loss recently.
We had the most lovely dog for 12 years. She was a source of constant amusement, frequent delight and occasional irritation. She died last week and I tear up when I mention it. If I wanted to make a mess of things I could drink over it. But it wouldn't help. So I don't. I don't argue about the existence of God or any of that nonsense. I just pray when things get too hard for me on my own and it helps. Maybe it will help you at times. Whatever gets you through the night.
Sacrifice is ennobling and it is also searing. Once you accept the situation, you see how majestic it is and yet how sad, and maybe you let the tears stream down your face for a while but you accept it. Afterward you feel human.