long term care for people with mental illness plus self injury

Many people might not know anything about what I’m gonna write about but I’m gonna write about it.

Self injury, my definition is the use of physically inflicting pain on oneself (cutting, burning, scratching ETC) in order to cope with emotional pain. This means different things to different people, and each case of self injury is as individual as each person’s experiences of the symptoms that accompany it usually anxiety, depression, sometimes eating disorders PTSD ETC.

Self injury is most commonly by the everyday person thought of as occurring mostly in teenagers. And that does happen a lot. It can happen to people of all ages both men and women.

There are still even with all this, a lot of therapists doctors and other p[rofessionals who don’t understand self injury at all. They can’t even begin to get their minds around the fact that someone could purposely hurt themselves and cause in a lot of cases extremely visible and deep wounds to their body, at the very least pain, and that this is helpful in any way to them. It just baffles them. Others take the tac of assuming it’s for attention. And yes one thought about self injury is that some people do it to show others what’s going on in the inside their thoughts and feelings through cutting ETC. That doesn’t mean their drama queens or anything. The emotional pain and trauma behind the behavior is still just as deep whether you’re doing it for attention, a term I hate, or not. It’s most commonly in this sense thought of as then being a part of borderline personality disorder. Which while part of that official diagnosis isn’t always the case and furthermore people with BPD I feel deserve a whole lot better treatment than they’re getting. I don’t have this, but from watching friends that do deal with professionals, or a pforssionals reaction when I tell them a friend has it and I’m looking for help for them, it’s like OMG BPD really? Umm no. Like it’s too much trouble than it’s worth or like the person that has this is somehow now not worth caring about, and will just self destruct anyway. Sadly that’s truly the deep feeling this one friend has, that professionals all her life have just said she’s doing it for attention so don’t take anything seriously and just brush it off. Which is why I hate the term doing it for attention.

Then you have psychiatrists that say you’re3 doing it because you must be hearing voices. Like that’s the only thing that could ever push someone to do this to themselves.

I was lucky to find Jonathan, and then how he got the staff here at Albany on the same page about all this. That it’s a coping mechanism and should be respected as any other coping mechanism and talked about easily, the same way you’d talk about drugs or alcohol or someone who has sex to cope emotionally etc. Like it shouldn’t be this huge elephant in the room that people can’t talk avbout. He tries to keep explaining to people the psychology behind it to have it make more sense. And he’s done a good job here with my friend Jess and I. We both have a history of self injury. We both do it differently physically and have vastly different emotional reasons.

The problem became when I got another friend who deals with this except on a more severe scale. It was then I realized how limited your options are at least on Medicaid. I’ve seen wonderful sounding residential treatment centers, outpatient clinics ETC that deal with this issue. And despite the misconceptions there are more and more therapists now finally getting it and learning how to treat it, mainly with DBT but there are lots of proaches as with any issue.

The problem is nine times out of ten even the really good therapists, who are in private practice, don’t accept Medicaid. I actually think it’s more along the lines of they can’t apply to be on Medicaid or something crazy. Like in IL I guess an individual in private practice can’t apply to be on Medicaid however I have seen some individuals listed who do take it so I have no idea what to say about that.

Certainly the residential treatment options and partial hospital programs are out. Alexian brothers has a specific department for self injury recovery. They wrote an awesome book Self-injury: simple answers to complex questions. Sadly reading the book is as close as I will get to knowing their program. Being a free standing behavioral health hospital they can’t be on Medicaid either. I guess the pattern here is somehow changing policies (like that’s gonna happen anytime soon I know!) so that more places are able to take Medicaid. In IL in particular it’s really hard.

So someone like my friend who by the way is in a wicked small town in IL where there isn’t even really public transportation, really doesn’t have that many options. She’s kinda stranded at her house and can’t drive so she’s at the mercy of someone being able to even take her to like get her meds and to a psychiatrist, which sadly sometimes doesn’t happen which partly is the issue her body not getting meds regularly. But even if she were in like Chicago where she didn’t have the transportation problem. She still wouldn’t have a ton of choices in a therapist. When I went to turning point in Skokie which is clearly their one community mental health center, I found out they’re most uncomfortable with this topic. Claiming they don’t have the specialized training to deal with it. That or eating disorders, or adictions that aren’t in late stage recovery. These are serious problems that I’m sure a lot of people in the local area have to deal with. It’s so sad to me that they can’t get the training get therapists in there that can do it. They had one DBT therapist but she wasn’t even willing to talk about it in group. It wouldn’t be a problem if you had like at least a couple other options to go where you knew you’d get solid care on it.

There are good places that can treat this stuff. They’re just not anywhere near affordable to people on Medicaid, it’s like we don’t even haqve half a chance on it.

Moving on…

I think the problem becomes even more comples when you look at people who for whatever reason only have stability living in some kind of residential setting be it a group home or intermediate care facility or somewhere. This has been the case for Jess and I. For whatever reasons there’s no way that we could emotionally l live elsewhere. Neither of us, for our own reasons have much support from family and friends. And neither is emotionally ready yet to live on our own.

We’re very lucky that we both ended up here with the extremely skilled and flexible Jonathan Eastmon as clinical director. It took some doing as both our cases are very different, and I think ours is like one of the first times that they’ve had to tackle self injury. But they did it and we’re both doing pretty well.

The problem I think is when the issue gets more severe. And I know each case is different and I’m finding that even here they’re not skilled enough to handle certain things. Like people using certain objects and things to cut that could easily be sneaked in here and just the level of physical injury that would cause.

So all these places that normally take people with all kinds of mood disorder, anxierty, psychosis issues are not able to take on this problem. Over time I’ve gotten very frustrated with all the people saying no. And I know that’s not the way to go about it because they aren’t doing it to be mean. It’s just something they can’t take on and are probably afraid of doing more harm than good.

I don’t really care about the number of places that can’t do it I just want to know what places can. And I’m having a hard time finding that out. Again there are specialized group homes and things like that for this but again no Medicaid.

Jonathan said he’d make some calls. I did find one place another ICF that would take the level of need but I actually don’t know which hospital my friend is in in order to get things set up for her.

Jonathan said some of the places that would take this issue of self injury I wouldn’t want my friends to go to. Which scares me to death. It sounds like jail for people with mental illness or something.

I’m wondering about people in other states since I only know IL. Though I lived in MA all my life, I had my breakdown before I left so I don’t know anything about the mental health system there. I’m curious to hear from Medicaid folks if possible. What your experience has been with finding care either outpatient or inpatient/ residential that can help with this since apparently it’s so specialized and so many of the places that deal with it are either private insurance or private pay. I’m really interested to hear about this because it’s important to me.

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4 thoughts on “long term care for people with mental illness plus self injury

  1. At least IL has some options. Ireland has none. Except long term hospitalisation. There arent any intermediate care places I know of. There are long term places but mostly they are secure wards. XX

    • Yeah I’m really happy IL does have what we have. Though Edith told me the reason for this actually is that back when there were asssylums, IL was the worst state for it with the worst abuse ETC. So they put laws in place. And created intermediate care facilities to make up for screwing people up I guess. Sad to know why they did it. But yeah. I know other states only have group homes or loacked units like CA. And it does seem like Ireland only has the locked long term hospitals.

  2. Oh, Sam, your situation makes me angry and sad. I used to cut myself with razor blades. I was in my twenties. I stopped when I began to meditate. I never to told anybody about it, even my therapists. One day I read that it was a reaction to being abused as a child. That relieved me. I never did talk about it until I decided to be a part of Journey into Courage, a theater piece written and performed by women who have survived domestic violence. I wanted to make the point that when the parents were alcoholic, it was already abuse of the child, even if the parents weren’t violent. So I enacted on the stage cutting myself with a razor blade. We did 34 performances over the years 1990-94, and then a video was made which is still used today to train Police officers and other emergency personnel.
    At that time I was not aware of the PTSD. I didn’t understand why I did it. I can see that people could have different reasons. More recently, I realized that I had done it because my emotional difficulties were not visible to me, didn’t seem real, and cutting myself produced real pain.
    Just one comment about why therapists don’t take insurance. The amount of bureaucratic work involved is way too much. I believe that health care is a human right and should be available to everyone.
    And a comment about “attention.” The need for attention is functional, being paid attention to is nourishing and healing. To say “O she just wants attention” in a dismissive way would be like have a starving person crawl up to your front door, and saying “O she just wants food,” and then ignoring it.

    • Hi Jenny. Thanks for sharing all that!
      Wow about the theater piece! What ground breaking work. And I can tell how much it helped you and so many others.
      Your reasons for cutting make complete sense to me. I’m glad you’ve been able to stop. I’ve done really well thanks to the care plan and support of the staff but I know it’s something I’ll always struggle with which is why support is important.

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