In The Hospital

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I am a 61 year old woman with Asperger's, as well as Tourettes and a few other neurological issues. I just ended up in the hospital with a mild stroke.

It has been nothing but a descent into hell. I could not get them to listen and/or understand my issues especially the sensory ones. I thought they were beginning to but then today they put me in OT among a bunch of other people. There was a radio blasting right at me from my right and a guy on my left playing his own music from his phone and yelling across me to someone on the other side of the room. There were wheelchairs and walkers scraping and therapists talking usually quite load to other patients and each other.

I was in such pain from sensory overload I was in tears. I begged them to take me out of there and they said things like, "I know" while patting me on the head and back (yeah that really helped like I wasn't already sensoried out) but left me there. Then I was told I had to understand they were busy. Excuse me? This was way over reasonable, and I had been white-knucking through reasonable.

They didn't believe me when I tried to explain my med reactions.

They ignored most of my pleas of things like closing my door to stop the lights and noises and bings and dings that were grating on me so horribly.

I am so pissed and wonder what my rights are and if there is something I can do to make sure this doesn't happen to someone else. And to make them accountable and more educated.

If I was a child I wouldn't be treated like that. But I am still autistic.

And I am feeling so anxious and on edge, so of course my sensory stuff is even worse and painful.

I've been told to stop the dramatics, and when I could not stop my twitching was told to just try. Geez, was that all I needed to do to get rid of Tourettes?

I was even told by the head of PT that she was "warned about me" from the emergency room. Why? Because I had the nerve to insist on help with sensory issues and because they didn't believe me about my med sensitivities.

Sadly I don' have a support system, no friends or family to speak od which made things worse.

I would demand to speak to a "patient advocate" or "ombudsman" or whatever they would call such a person wherever you are at. In most places a facility can get sanctioned if they refuse to allow you to file formal complaints about treatment.

I did speak to the patient advocate, what she said and promised and what actually happened were two different things.

I will, however, make a formal complaint once I'm out of here, just don't know who to make it to.

I was even accused of faking the stroke.

Unbelievable.

I should be calm now, not stressed to the max.

Thank you all for listening. It's so frustrating for me.

Once you're out I would then consider getting the media involved. Perhaps their public humiliation will prevent such treatment from happening to someone else.

Since they are not likely going to accommodate you when you are there, grit your teeth and bear it until you are able to get out of there. Once you are out, file a formal complaint or write a letter to the president of the hospital.

I'm sorry that you have no friends or family that you feel can support you. I really feel for you. If anything, just know that we are here for you and can always talk if you are feeling frustrated; you are not really alone.

In addition, you must have an "attending physician" while hospitalised. I would get with your attending physician and have him/her "care plan" your treatment around your issues. If the staff who works with you violate "doctor's orders", they can lose their jobs. If you feel your attending physician isn't sensitive to your needs, you have the right to get the attending physician changed to someone who will be, or to get transferred to a more compassionate facility.
Remember, if you don't fight back, nothing will ever change. I experienced a lengthy hospitalisation after surgery complications back in 1998 and my persistant self-advocacy ended up getting myself placed on "VIP" status at the hospital which is normally reserved only for celebrities or respected public figures. I was given a totally private room during my entire stay (not the "norm" then), and my meals arrived on china instead of styrofoam. In addition it was "care planned" that the door to my room remain closed at all times and no incoming calls would be transferred to my telephone as I did not want to hear it ring, plus I was NOT to be awaken during the nite for vital signs or if I was observed sleeping during the day.

I had a mild stroke earlier this year and a huge tounge reconstruction operation for tounge cancer this month. Hospitals are sensory hell and rehab faculties can be the same way. I had a month advance notice before the operation and I spent most of the gerding for it and it has helped. Knowing I was an aspie gave me a general idea of problems in advance. Biggest sensory hell here in rehab is alzhiemer patients who are very loud and sleep interruption for tube feelings and medications. People treat me nice which I ascribe to the fact that the operation left my face with obvoius disfigurement and left me non-verbal, very psychically noticeable unlike The hidden Aspergers.

I would advise going to a faculty not in the hospital for Psychical Therapy. I would look for a small facility.

OP I really feel for you. I'm sorry that I'm not clear whether you are still in hospital or not. I'm assuming you have been discharged or soon will be. Your anger is completely valid in the circumstances, and I hope it has done you some good at least to express it to people who believe you and are appalled at what happened. I know these things can and do happen. It is unacceptable, hurtful and disrespectful.

For now though it is so important that you don't become involved in conflict that is stressful and will affect you physically - through the autonomic nervous system - and this is a risk for you in the coming months, so put your own immediate needs first here.

It not uncommon for emotions to be all over the place for a while even after a small stroke - because the stroke upsets the balance of enzymes in the brain, and it takes a while for these to stabilise.

I hope that the cause of the stroke was identified, because this gives you some informed scope to make good plans to address whichever issue was the major contributor. The various causes are all cardiovascular in different ways, eg atrial fibrillation, temporary blockage of a carotid or other artery, a clot travelling to the brain. Your initial symptoms will offer some clue to this, if they didn't tell you at the hospital. Did they do an MRI? This can identify the location of the stroke in the brain, the type (eg ischaemic), and how severe it was or not.

Have they discharged you with appropriate medication? If not, you will need to find and consult a caring GP who can investigate whether you need to be on something like blood thinning medication for awhile and/or other things. If they have given you nothing, and you can tolerate aspirin, then read about it and consider taking that in the meantime. However if they did give you a blood thinner, you Must Not take aspirin at the same time.

I was quite disturbed by what you wrote. Much earlier this year, in the women's forum I think, I began a thread on these issues - how can we improve these problems, how to deal with dismissive attitudes in medical settings and move past them to achieve appropriate, careful and respectful care? If it is any comfort, this is not just a problem for women on the spectrum; gender bias in medical settings seems to affect all women, (very strong research confirms that) though the way it affects us has additional factors and risks. And I am inclined to think that women in our age group get the double whammy of gender bias and ageist bias as well.

Knowledge is power. Perhaps go to the library and get some books on stroke and aftercare. Know what to look out for, how to optimise your self care, what nutrients you need, and get the rest you need. Perhaps meantime, write down all the things that made you angry, put the paper in a box, seal it, and write a date on it (say 3 months' time) in the future for when you will open that box and decide then what to do about those issues. They will not go away, they are safely preserved in the box for when you are much better.

When you are better, perhaps as a first step, request a copy of your clinical records from the hospital (if American systems allow this). Or if they will not release it, then ask them if you can go and read it, if you feel up to that and think it would be useful in terms of information relative to your complaint.

For now, avoid all stresses that you reasonably can. I wish you an uncomplicated recovery back to health over the coming months.

Here is the thread with that discussion, if you are interested and up to reading it:

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