Someone on a withdrawal board asked me what I looked like when I was sick from withdrawal. This was my response which I’ve edited and filled out a bit for this post:
I was obese most of the time I withdrew…I looked like a different person than I do now for a lot of other reasons as well. I couldn’t sit upright for about two years because my blood pressure was so low, so not only was I bedridden, I couldn’t even sit up. I didn’t have the strength to hold my hand up to my mouth long enough to brush my teeth. I’m lucky my teeth didn’t rot away. My gums are a bit of a mess but I now take meticulous care of my teeth. I couldn’t speak most of the time either during that time…the issue with speaking actually lasted much longer than the critically bedridden time. The issues with verbalization led to further isolation. People couldn’t visit if I couldn’t even talk. The phone wasn’t an option except on rare occasions. My muscles got totally atrophied. I had enough strength to get to the bathroom but not enough to do anything else out of bed. On a couple of occasions I ended up on the floor of the bathroom before finding the strength to find my way back to bed. Bedridden means I didn’t leave the house for two years as well. I was f***ing sick and I looked f***ing sick. No washing, no haircuts (I hacked my hair off at one point so that it would just be out-of-the-way)…I was completely nonfunctional…I needed 24 hour care. My husband provided that care…it was total hell for him too…isolation too…because no one understood or cared enough about what was going on in our house even though we tried to let it be known…there are no supports in the community for what happened to me… I would have died without my husband’s care…this I have no doubt about.
What else was it like? Here is a symptom list: Post psychiatric drug withdrawal. One woman’s report of symptoms
I’ll post before and after pics too (scroll down). You’ll understand if I didn’t take pics while I was sick. I really don’t know what I looked like during that time. Honestly, I didn’t have the energy to consider such things. I can still often feel shitty these days, but at this point when I feel like crap I fall strictly in the invisible illness category. There was nothing invisible about how I was sick when it was really bad. I didn’t really relate to that term at all at that time. Bedridden, atrophied and unwashed isn’t invisible except that no one sees you in your home of course. And almost no one did. Only my husband and one woman who became a dear friend. But the illness is glaringly obvious for anyone who spends time with folks in the throws of severe protracted psychiatric drug withdrawal.
And to be clear — not everyone gets sick like this when they come off psych drugs. It’s some far too large minority percentage that do. Clearly far too many of us. I know thousands of us. Of course there is a great spectrum of outcomes from barely affected at all to gravely affected. The boards online are heavily weighted with the worst of us because we have nowhere else to go. Those who don’t need the boards for support aren’t there.
Some back story here:
The above two pieces can serve as a mini history of my personal journey in and away from the psychiatric system.
It Gets Better Series — YES IT DOES
*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If you MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up