"You're not listening. Don't you understand? You're not going to be okay."
January 16, 2010 3:35 PM   Subscribe

How do I learn to accept a severely modified life as a result of a psychiatric disability?

I'm an agoraphobic with PTSD and severe, debilitating panic attacks. My last attempt at working went spectacularly badly; my psych meds + flu meds left me delirious and combative and I was fired. I haven't been able to work since. Other than going to the doctor or the pharmacy, I'll manage to leave the house once or twice a month. Over the last year as my symptoms worsened, I had to apply for disability and was declared a disabled dependent adult in order to get on my mother's health insurance. I'm relying on family charity to pay my mortgage until I can sell my home. Meds and therapy are just barely keeping my out of the hospital.

I feel like I'm in mourning. Over the last five years, I've gone from being a functioning member of society to being one of those people that smells bad and shakes and talks to themselves on the bus. I've gone from being a homeowner and a career woman to hoping I can still live independently. I'm not likely to have adventures and friends and loves and success in the way I had envisioned for myself; now it's a major achievement when I'm calm and linear enough to shower AND get the mail on the same day. It hurts so much because once in a while I'll have a moment of peace without dissociation or panic and I remember exactly what I've lost.

If anyone's gone through this, how do I learn to accept what seems like a stunted and terrible future, parsed through a brain that interprets everything as scary and dangerous?

throwaway email: anonymous.loony@gmail.com
posted by anonymous to Human Relations (17 answers total) 14 users marked this as a favorite
You mention meds, but not therapy. Therapy really can help you to recover some of your old function. The fact that you functioned well in the past is (in my I-was-a-therapist-but-not-anymore-and never-your-therapist opinion) a great indicator that you do not have to settle for a "stunted and terrible future."

There are newish treatments for panic and PTSD that perhaps you haven't considered yet. Can you get a referral to someone with a specialty in PTSD treatment? Even doing some reading may be helpful in getting you to a place where you can get out to see a therapist. Sounds like family is at least a little supportive-can someone help you with any costs. I would recommend a book, but I have been out of the field long enough to doubt that my old recommendations would be as helpful to you as perhaps what some other MeFite with more up-to-date knowledge can provide.

Meanwhile, I will be keeping you in my thoughts. Please know that there is help for you.
posted by thebrokedown at 3:50 PM on January 16, 2010 [2 favorites]

I think you may be catastrophizing. Just because one work experience went spectacularly badly doesn't mean that all future work experiences will be similar and that you will never get better. The thing with mental illness is that it waxes and wanes-- it doesn't always or necessarily get progressively worse. So, you are having a horrible time right now and that sucks but it doesn't mean that you will always be having a horrible time. However, if you resign yourself to the fact that this is your lot in life and it will never get better than you could possibly create a self-fulfilling prophecy.

It might get worse. It might get better. You don't know and because of your PTSD and panic, you are almost certainly prone to see things in a very negative light. You need to talk this through with your therapist and if your therapist isn't helping, you may want to consider taking steps to find a better one. Some therapy can make PTSD worse by forcing you to relive trauma that you are not ready to deal with or don't feel safe dealing with and that can be retraumatizing, not healing. Make sure this isn't happening. Make sure you have safe people around you as much as possible.

It sounds like you have a very complicated case and you may want to see a super duper top of the line academic psychiatrist who specializes in PTSD and panic, just for an evaluation and to make sure you are getting appropriate treatment. Do you live near a university? You can look in pubmed to find out who has published widely in these areas and email them for a referral. It's really difficult to actually get evidence-based top of the line care for mental illness: but you shouldn't accept less and you may need to marshall all of your strength to slowly find how to access it and then do so.

There must be reasons why it has gotten worse-- triggers, stress, etc. If you can identify and address these, it may help you get better. But don't believe your mind that this is the best it's going to be: you don't know. You are sick right now and need to get as much support as possible. The more social connections you can make, too, the better it will be in the long run: the most healing things for PTSD long term tend to be supportive relationships (other stuff may be needed to start recovery, maintain it and deal with particular symptoms but to get the closest to well that you can, support and connections are essential so do what you can to nurture these).
posted by Maias at 3:53 PM on January 16, 2010 [1 favorite]

It must be terrifying, and I can't imagine that most people would feel much better than you do in your position. But. Something I notice in your wording is how much you identify with the "sick" part of yourself, rather than with the YOU parts of yourself. Having had the presence of mind and heart to be able to post this question to AskMe, I know that there are at least some things still well within your control and ability.

I, and I would even extend this to most other mental health professionals too, do not see PTSD or panic with agoraphobia as permanent, unchangeable diagnoses or perpetual states of being. I see them as treatable, improvable, work-with-able, and absolutely not something you must resign yourself to being crushed under for the rest of your life. I think that living with severe diagnoses can be incredibly difficult, yes, but not an insurmountable obstacle--you are still Yourself, still with the human qualities and worth and goodness that you have always had. Not only are you still that woman you talk about having been five years ago, but you are that woman with the integrated experience and wisdom of having been through the things you have been through in the past five years.

I feel that it's important to empower yourself to take control of what you can be in control of: taking care of yourself by seeing a therapist and psychiatrist regularly, being kind to yourself, writing in a journal, doing something that gives you pleasure or even a moment's relief from being trapped in all of the psychological labels. Make a list of the things that you want to be able to do in a day (even basic things like 1. get out of bed, 2. have something to eat, 3. take a shower) and appreciate yourself when you are able to do them, and use the knowledge of how good they'll make you feel to motivate you to do them. I don't know your treatment history, but I wonder if a lot of failed treatment is part of the pessimistic/hopeless outlook on your future that you have. Just as a last point, I hope that I can encourage you to be your own advocate in treatment, and if you're not seeing results from what you've got, don't be afraid to ask your doctor for something more or different, because the big or little solutions may be some things out there that you haven't found yet.
posted by so_gracefully at 4:07 PM on January 16, 2010 [9 favorites]

You don't have to accept a stunted and terrible future, I swear. Because I've been exactly where you are -- complex PTSD, chronic major depression, severe anxiety, and consequent agoraphobia. Ditto on the disability, relying on my family in a way I never thought I'd do as an adult. My career went down the tubes. My finances did the same.

It sucks.

But it doesn't always have to be this way. I swear. There are so many options out there: Medications, obviously, administered by a smart savvy psychiatrist who will monitor your progress and make changes when necessary. A good therapist (both CBT and DBT are very helpful in situations like these). A social worker or case manager who can help you tackle financial and logistical issues.

There is hospitalization, partial hospitalization, intensive outpatient therapy -- there are so many options. And I know it sounds daunting. It's daunting just to wash your hair sometimes. Or walk across your apartment to grab a glass of water from the kitchen.

But one day it will be easier to wash your hair. One day you won't think twice about checking the mail, it will come so naturally.

I wish there was a simple solution. Like, "Call these people. They'll help you," or "Take this pill. It will make you completely sane!"

I don't have all the answers, or even any real, substantial answer other than this: Your life is not over. You have agency. Your brain may think crazy thoughts, but another part of your brain also responds to those crazy thoughts, and you can control that second, not-as-crazy part of your brain.

So what you need now is to rally the troops. Ask your family and friends to help you find a hospital program that addresses your needs. Ask your therapist and psychiatrist which programs might be right for you. Most major teaching hospitals in the US have some form of charity care; get help applying for it. I highly recommend Payne Whitney if you're in the New York area.

(This is where your family may have to do some heavy lifting, in finding you the right programs and getting you in the door. But it will be worth it for them and for you in the long run.)

Right. I guess my answer is this: Don't accept a stunted and terrible future. Being mentally ill is not a death sentence. And anyone who tells you that you'll never be okay? Is ridiculously wrong.
posted by brina at 4:09 PM on January 16, 2010 [15 favorites]

I've gone from being a homeowner and a career woman to hoping I can still live independently. I'm not likely to have adventures and friends and loves and success in the way I had envisioned for myself.

Just as you were surprised that you are less functional than you were before, so ├Żou will be surprised when you find yourself more functional again. Do not assume any of your assumptions about the future are correct.

Also, my mom is like you, they put her on bipolar meds and she cleared up.
posted by Ironmouth at 4:11 PM on January 16, 2010 [1 favorite]

I'm going to repost my comment from this thread on overcoming serious and overwhelming medical challenges (such as the one you describe). I have also had to deal with the complexities and connections of managing emotional/physical/mental medical issues at once. I hope you don't mind me reposting from an earlier thread, but I thought this summed up my suggestions for you well:

I've talked about having a permanent physical disability before, maybe my prior comment on dealing with health related stress will of use to you. I also have been close to death and survived (due to malaria, hit and run car accident, and other events) and know that you can do it too! It's not an easy process, but remember your path to recovery is sometimes one step forward and two steps back or full of unexpected twists and turns. While this comment focuses on coping with a broken wrist instead of other injuries, much of what I wrote there still stands; namely to not be too hard on yourself and allow room for adaptations even temporarily to ensure you are healed in the long-run. For example, you might not usually turn to a therapist or religious figure for support, but in this time of healing maybe you want to consider it as even a (temporary) situation. There is no shame in asking for help (I believe), and people want to help you recover.

You talk about wanting things to be "as they were", (and I wish you the very best luck in your recovery period) know that life is always changing, and it's part of the human condition to survive and adapt to new surroundings or realities (even albeit temporary). Change isn't easy, but if you seek out support from other people or services, I'm sure it can help you immensely. Remember to take care of yourself - eat, sleep, bathe and be as mentally and physically stimulated as possible!

Good luck to you, I wish you the best of luck.
posted by carabiner at 4:17 PM on January 16, 2010

Ah, catastrophizing. We all do it, and it's hard sometimes to see beyond the immediate crisis.

One analogy that always helps me is to compare mental illness and disability to physical illness and disability. When you're having a mental health crisis (and it sounds like you are), that's not the time to plan for the future or to make broad sweeping assumptions about your life and your abilities. It's like having a broken leg and trying to go for a walk, or like having diabetes and trying to eat like a teenager. I know that things seem bleak, but remember that your mind is like a broken leg right now, and you can't always rely on it to work the way it's supposed to. Best to get some support (therapy, say) and wait for things to get better.

I think it's encouraging that you're well aware that your mind is feeding you some unreliable messages; as you say, you've got "...a brain that interprets everything as scary and dangerous..."

The previous posters have good recommendations on therapy and psychiatry, and I hope you're able to get some assistance.

More directly, though, I can advise you to stop thinking long term right now. Focus on good things in the day... the nice hot shower, the feeling of putting on clean clothes, the taste of a grilled cheese sandwich, a funny movie on TV, or just sitting at a sunny window. Let yourself enjoy these things, and let yourself feel glad that you're able to be here to have these times.

Let's also not forget the many pleasures we have now that were unavailable a generation ago. The internet is a great solace and comfort, and can give a strong sense of community to anyone with a keyboard and the ability to put words into sentences, two things you clearly have. Read some of your favorite forums, make some wise and helpful comments, engage in a literary or political discussion, anything that makes you look forward to logging on and checking your box.

I hope things go well for you, I truly do. Know that you are not alone, no matter how dark it seems.
posted by math at 4:21 PM on January 16, 2010 [4 favorites]

I worry from what you've said that you have kind of given up and resigned yourself to this being your new life forever. Maybe it will be and maybe it won't be--hopefully, it won't. Be gentle and loving with yourself and your current abilities, but please don't totally give up the fight. Obviously you can't snap your fingers and create change in your life, but you also can't change unless you believe that it's still possible for you to regain function.
posted by needs more cowbell at 5:08 PM on January 16, 2010

As I see it, there are two components to your question: what should I do now, and what should I do next.
What I did:
* Mourn. Your life as you knew it is over. You can never fully trust your brain/body again, and while that brings good things (increased self-awareness, etc) along with the bad, it's still incredibly painful to have to learn. I mourned for years--rebelling against my diagnosis, refusing to accept that this would be a part of my life forever.

While mourning is a necessary step, being in mourning wasn't "helpful" in the terms of concrete progress to show the world or yourself. And there IS going to be progress. It will be slow and rocky and sometimes (or nearly all the time) it will feel like one step forward, one step back, but there will be progress. In what direction you will progress ("better" or "worse", for lack of more appropriate terms) is up to you. You can choose to give in to your illness, and mourn for the rest of your life, and I for one would not judge you for doing that. You've been dealt a truly shitty hand, and it's true, sometimes people don't recover from these things. Or you can choose to go to step 2, which is where I find myself now.

* Move on from mourning and start fighting. This is the hard part. Therapy, psychiatric medications, everything brina mentioned. I've been there and done it all--inpatient, outpatient, intensive outpatient therapy, group therapy and individual therapy combined, all with a psychiatrist micromanaging the med-go-round.

A lot of the time I couldn't see it helping, but looking back, I see that everything I tried, all the false starts and bad exits, all of it contributed to me fighting. Fighting against the disease that robbed me of my most precious possession: myself. And that's the hard part, fighting.

Believe in yourself. If you can't believe in yourself, at the very least, believe that you have something to fight for, and go about the motions of doing so, even though you may not feel like it, even though you may feel that nothing is working. Generally when I feel like nothing's working, it's actually the disease talking, insidiously trying to protect itself from positive change, deviously trying to get me to give up.

Good luck, and don't give up. If you want to talk to me, I'm always available via MefiMail. And if by some chance you happen to live in Iowa, I have some great therapist/psychiatrist recommendations for you.
posted by saveyoursanity at 5:09 PM on January 16, 2010 [1 favorite]

This is not your life forever. I mean that.

Yes, things suck right now. Yes, now you aren't all right, can't hold a job, etc. That is reality today. But-there are treatments, there are drugs, there are always new meds to try, therapies to try, and for that matter, there is prayer.

My psych meds used to cost the equivalent of a car payment. I had a shrink suggest to me once that I investigate disability...I had to leave my job, struggled just to function.

Now I have been med free for almost three years. I hold a stressful job and am quite successful at it. I'm happy. Five years ago I would not have dared to dream I could do any of this.

Yes, you are in a tough spot right now. But I'll tell you what. Baby steps. Just take one baby step, then take another. Don't put yourself on a time line. Just keep taking one baby step at a time.

It WILL get better.
posted by St. Alia of the Bunnies at 5:31 PM on January 16, 2010 [5 favorites]

One thing I've found helpful (PTSD + depression) is not making these insane goals for myself. Not judging myself on yesterday's criteria (or even worse, pre-PTSD era criteria). So my goal is to be able to hug my partner without fear? When that used to be normal? That's what it has to be. That's what it is. Maybe in the future my goals will change and instead of a hug, it's something else - but right now, that's what it is.

There are set backs. There are days where it all seems shit. But eventually my good days started outweighing the bad. I still get angry and upset that I have to work at this stuff, at being 'normal'. But I try and be angry at what got me the PTSD, not at myself for having it.
posted by geek anachronism at 5:37 PM on January 16, 2010 [2 favorites]

now it's a major achievement when I'm calm and linear enough to shower AND get the mail on the same day.

This is now. For now, these accomplishments are really meaningful. This is the time in your life when you start believing the things you always heard growing up, like, "All that matters is you try your best." You are trying your best. I have deep respect for you.

So work on accepting now, just as it is. Just as you could not have foreseen this life change for yourself, so can you not see what happens next. All you know about the future is that it is at least somewhat connected to what you do today, so focus on the present instead of the vague, terrifying, impossible-seeming future. Just do the best you can, and take it one day at a time. Ask yourself at the beginning of each day, "What can I do today?" If the answer is "not much", then work with that. You will surprise yourself more often than you dared hope.
posted by hermitosis at 7:15 PM on January 16, 2010 [2 favorites]

While this comment focuses on coping with a broken wrist instead of other injuries, much of what I wrote there still stands; namely to not be too hard on yourself and allow room for adaptations even temporarily to ensure you are healed in the long-run.

While in principle I agree with this statement, the common attitude toward people with mental illness magnifies the problems enormously. After seeing my son struggle with his mental illness for years, the things that have made a difference are:

1. Family and friends support. Educate them to the reality of your problems and try to tell them what your real needs are. (NAMI is an excellent resource for educational material, offering classes where families learn how best to deal with the disease)

2. Peer support. The support of people who have had the same experiences and problems, and who share their coping mechanisms is invaluable. The only people who really understand your problems are the ones who share your problem. Again NAMI can put you in touch with your peers, either through your local chapter or online.

3. Self esteem. Work at regaining your self esteem: you are not your disease, you are the same intelligent and capable woman as before, give yourself the gift of time and be patient with yourself. The day program my son attends has classes on self esteem, anger management, budgeting, and recreation.

4. Finances. Medication can exhaust a disability check very quickly. Unfortunately there is a lag time of 18 months between being declared disabled and being accepted into the medicare program. Before your state steps in with Medicaid, all your financial assets have to be depleted, unless they are funneled into a "Special Needs Trust", a trust over which you have no control. The contents of a SNT are not counted in determining your eligibility for various state aids and benefits. ( We are in the process of setting up a SNT for our son, with a very small home as its principal asset to make sure that, when we are no longer here, he will not be homeless, which seems to be the destiny of our mentally ill.) You might want to consider protecting the proceeds from the sale of your home in this way.

Good luck to you for your recovery, which I feel sure will happen! Feel free to me-mail me at any time.
posted by francesca too at 7:26 PM on January 16, 2010

I'm not a professional, or a psychologist, or a therapist, or anything with a degree attached, but I have been you before.

Do not accept the life you have now as any indication of your future. It is hard- so very hard to push away the catastrophic thinking in order to see what might be available to you instead, but it can be done.

Everyone above me has thrown around some great suggestions, which I will echo. Therapy, medication, exercise, inpatient or outpatient treatment- these are all options.

What worked for me when I was heavily agoraphobic and riddled with panic attacks? I grabbed a calendar and I wrote down one thing that I wanted to do each day, for the week ahead of me.

"Do the dishes." "Reply to Mom's email." "Deposit check at the bank." One thing a day isn't big, but it is consistent, and I found that if I had a string of several days in a row where I completed my one task, I felt great about that. It gave me the confidence to do two, three, then more tasks per day.

Two years ago, I sat on my mother's couch night and day, day and night. I had withdrawn from college and wasn't working and like you, it was a good day when I felt strong enough to take a shower and get the mail from outside. I'm not cured, because for me, anxiety is always there. But I can battle it, and I can take things one step at a time until I've conquered them.

I'm back in college and I'm living on my own, and I know you can crawl out of that dark place you are in and feel the way you want to feel. Please feel free to mefi-mail me if you would like.
posted by rachaelfaith at 8:29 PM on January 16, 2010 [2 favorites]

Have you looked into getting a service dog? Service dogs have been able to help many people with psychiatric disabilities function. Check out Service dog tasks for psychiatric disabilities, and memail me if you'd like to be put in touch with some people partnered with psychiatric service dogs.
posted by Soliloquy at 8:35 PM on January 16, 2010 [1 favorite]

Check your throwaway email.
posted by FrauMaschine at 12:36 PM on January 17, 2010

There have been amazing advances in medication for psychiatric illness; there will be more.

You have a genuine illness, and deserve excellent treatment and compassion.

Don't hesitate to have meds reviewed; I get panic attacks on some meds, and a reaction to a combination of prescription meds made me very, very ill a few years ago.

Fresh air and sunshine help. Do your best to get outside every day. Walking a pet is great for enforcing this. Getting outside and feeling real air and sun totally changes how I feel, even in bad weather.

People with chronic illnesses have ups and downs. Right now, you're in trouble, but it won't always be this bad. You can still have meaning and love in your life even if you continue to be disabled.

Taking a shower and getting the mail are not negligible. You actually sound like you're handling things quite well. You've suffered a big loss, give yourself credit.
posted by theora55 at 12:37 PM on January 17, 2010

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