The Silencing of Agoraphobia

hi, thanks for the article. i have mild to moderate agoraphobia along with other anxiety and dissociative disorders. i'm not able to work or go to church but i do go out some. it's much easier for me to go out with someone. i am hoping to get a service dog to help me. thanks again for the article.

(Noun) Extreme or irrational fear of crowded spaces or enclosed public places.
As a sufferer of agoraphobia the definition above is totally wrong. It is important to note there are a range of symptoms attached to agoraphobia, and elements of the above definition may fit some sufferers, but certainly not all.
My fear and anxiety is simply a fear of being outside, it does not relate to crowded or public places.I know that I am not alone in this being the central basis of the condition. I do have specific aspects attached to this which are probably less common. My anxiety stems from my disability and a fear of falling over. Actually the agoraphobia lessons when there are people present, since if I were to fall I would hope that their would be help in getting be back up etc. My definition is then;
(Noun) Extreme or irrational fear of open spaces.

How many times over the years in our groups online and off have we shared/heard how just going to the mailbox is a daily struggle. For myself it was/is that fear of who is watching. Yes and having others with us does reduce many of the fears. I have many times over my life shared that about the time I would brave the world some real danger would happen in the area (ie someone attacked/mugged) and I would again retreat to the safety of my home. After many years I can do much more during the daytime, though I rarely ever go out alone at night

How can we get help for the people who are housebound? I follow AGORAPHOBIA and ISOLATION on f/book and it is so very, very sad. I have suffered for 40 yrs after a car accident which snowballed into homebound. I have overcome almost every fear I had except DRIVING. I do drive but definitely not for pleasure. Sometimes I will panic and other times I will not. I have to be in the right state of mine to drive!!! I really want so badly to help the people who can't get out because of their fear, and it IS REAL. Should have a tv show as a rehab to help people.

I can barely leave my bedroom. I need help. Please.. :-)xxx

My family doesn't "buy" the whole agoraphobia thing, which feels like they think I'm making this whole thing up. I've been diagnosed, seeing a psychiatrist, but addressing "more pressing" issues with her at the moment. Dr. visits are a nightmare. I don't drive, so whoever brings me goes through hell with me. My family (and former friends) are quick to judge me, but none of them will read up on this to try to understand it. The shame is bad enough, leading a lonely life because people think you're nuts and choose to abandon you...it feels like we're still living in the middle ages. My soul weeps for help :(

The only good feeling I get from being this sensitive about life is listening or watching some asmr videos. If I'm not watching or listening to videos or music, I'm drawing or folding paper just to pass the time. I would give everything away to have my old self back. I really don't want to say to much, so I'm going to say I know how you feel and might think, find something to do at home and get lost in that moment. Maybe there is a way to slow down the awareness and become more peacefully aware. I know dealing with anxiety is the main cause of withdrawal symptoms. It's been 2 years for me now and I must remember what are the causes and effects so I can reduce the feelings by settling on awareness and being more content, hope this helps.

So much for taking any anti-depressant/Placebo, and for ever talking to any therapist about it. They tell you that they care, but they don't ring you at home, or check with your family, if you miss appointments. How long until many more agoraphobics are affected by outside noise, malicious neighbours, etc, until they can take no more, so much so that they begin to feel the only way is suicide, so that the sufferer can finally stop thinking about what could happen to them? Because let me tell you, the problem just gets bigger if it's left. As with any problem. I don't see how trying to convince me that Miss whoever is actually really friendly, is of any help. What do I care whether he/she is this or that? They're nothing to do with me. They're not in my life. So, how do cure an agoraphobic before they start to get suicidal? It's no existence, when you're scared of going outside, void of everywhere. Everything we need, requires a trip to shops, or banks, etc.

@MsMoore, Sorry that your family think you're faking your phobia. Oh well, that's their own problem to deal with. If they can't buy it, then why should you turn to them? Fair is fair. What makes them think you're lying about it? Any clue why? Or is it just them judging you? Me, you, and every other agoraphobic, do not have to justify our fear to anyone. And if anyone chooses not to believe us, then more fool them, because I'm not willing to talk to people who think I'm making things up. I refuse to help anyone who refuses to help me. Why would you lie about having it? Even if you were, it would hardly be beneficial in the long run, as you'd be giving yourself the choice to be housebound. Anyone with freedom of choice, wouldn't want to become housebound, because they'd be limiting their freedom. Who in their right mind wants to be stuck at home every day? It still wouldn't work out, because once the people you live with die, then there is no-one to live with or help get your shopping for you. Lying about it would be a total waste.

I have written a book and have a blog that explains the origin of Agoraphobia. There is a cure and a reason why people get this. I suffered for 40 years until I found out what was wrong. The blog is mysilentdisability.blogspot.com.
Yolanda

I have moderate agoraphobia. It doesn't FEEL moderate, but it technically is because I'm not housebound. That being said, going out in public, being around other people and interacting is often the hardest thing I have to do. I'm glad I still CAN do it, and I work very hard at maintaining the social skills necessary to keep from becoming a shut-in, which I very easily could become.
You are right about the term "agoraphobia" being tossed off way too casually. It is indeed a complex, tenacious and largely misunderstood illness that devastates the lives of many millions of people all over the world.

We have been running a group for agoraphobia sufferers, and indeed sufferers of all anxiety conditions. The group is in its 11th year. New members are always welcome. Its good to chat with fellow sufferers who at least know what you're talking about. Have a look for us here: http://health.groups.yahoo.com/group/home_links/

I have been struggling with panic disorder and agoraphobia for almost 6 years now but the last 3 years have been a living hell. In 2008 I had a full blown panic attack on a bridge I thought I was having a heart attack. Everything was swaying before my eyes my heart felt like it was coming out of my chest, I was shakin, sweating profusely, and had pins and needles over my face and lips. To this day I do not know how I didn't kill myself or someone else as I crossed over 2 lanes of traffic without looking and managed to get off at the next exit. My whole body felt contorted and I could not vocalize any words. Stressed out at work and working insane hours trying to meet insane sales targets set this nightmare in motion. My husband thought it was because I was working so hard and wasn't eating properly but something inside me told me this wasn't the reason. Four days later again approaching another bridge the same symptoms only worse came on and I moved into the emergency lane that's where the road patrol vehicle guy found me shaking in my car and called the ambulance and off to hospital I went. Test upon test was done only to be told by the ER doctor you have had a major panic attack it's just anxiety!!! I thought what on earth is he talking about I felt like I was dying orthat I was losing my mind. The next 7 months or so was the beginning of my nightmare just trying to leave the house in the morning felt like climbing Everest. I had to drive to work so I stopped getting on the freeways, bridges were definitely out, tunnels were out and main roads with lots of traffic and large intersections would literally make me freak out. I dontknow how, but with the help of my husband,family friends and colleagues I managed to keep working. My husband spent his day off work driving me around to my clients, my colleagues would be on standby for a call just in case I needed them at traffic lights....yes red traffic lights would send into a panic many times feeling that I would go through the intersection. I just could not wait there iit was as if some alien force had possessed me . I really believed I was losing my mind. My psychiatrist prescribed antidepressants, antipsychotics Xanax and sleeping tablets to help me calm me but the fear was unrelenting it punished me daily. Then months later the panic attacks subsided and I thought thank you god I am cured. The truth is that the only reason the attacks subsided was that I avoided everything and anything that reminded me of a situation or place where my panic attacks had occurred previously. I was fooled by this insidious illness that my life could be normal again. Nine months later when I was stressed out at work again the panic attacks came back with force and they didn't stop. I like many of you have been housebound, afraid to go to my letterbox, supermarkets are scary places as are shoppingcentres, crowds and today I even find it a battle to stay alive. Although I have managed to get to my local supermarket it's always preceded with intense fear and procrastination but somehow I force myself to get there even if sometimes I don't go past the cigarette kiosk situated just inside the door. I could go on and on about this illness, but I won't because I believe you all share my suffering and I am thankful that you are here to listen.

Since 1995 this monster has taken everything from me--friends, medical school, the possibility of relationships, sharing milestones with friends, etc.. All my life force, all my creative energy has been funneled into not experiencing panic. I can go places with others on a high dose of Xanax, but that's not really living--no emotions, minimal memory of where I've been and what I've done. Since then I've lost my mother and little brother--both very young. My friends, dispersed around the country and world, now have careers, spouses, children, and little time for themselves, let alone friends.
All the experiences above are familiar to me. The horrors on a bridge, feeling like my head would explode at traffic lights, the visual distortions and depersonalization and suffocation. Horrible, horrible, horrible.
You guys might want to look into the work of Dr. Alicia Meuret. Her capnometry-assisted respiratory training addresses panic at one of its physiological roots (low CO2--paradoxically, all the worst panic symptoms usually owe to low CO2 while O2 blood levels remain stable). Her approach is not widely available and it's difficult, though not impossible, to learn the particular type of breathing required to raise CO2 levels without a capnometer (and they're $$$), as it is pretty much the opposite of the way panic sufferers have been told to breathe and goes against instinct to some degree. Anyway, if interested do google her research.

I often resent articles on agoraphobia. The writer's rarely know the scope of the disorder, EVEN if they are homebound agoraphobics themselves. These authors only have a window of their own agoraphobia. Depending on the person, there are vary degrees of what a person can and cannot do, many agora.'s have 'safe' people, there are so many limitations but every single person is different. Reading only one article regarding agoraphobia is so misleading to a person who knows nothing about it and they are reading the article to help someone that they care about. How can they help someone after reading an article that leaves out so much or states the article only states ONE person's experiences as facts leaving out the many varying degrees, comfort zones, etc., etc., etc. I have been agoraphobic for 35 years, recovered much, but much recovery is still needed to live a normal free life. I have been homebound and it is hell. Now there are MANY things I can do, and MANY that I cannot do that still makes me feel as though I am NOT free. Anyone reading OR writing these article MUST be open-minded and realize there is much more to agoraphobia. NO article comes close, no author seems to know how VERY differently people suffer. For those who are reading an article to help people, read MANY articles and in particular read forums about those who suffer. THEN you MIGHT understand the degrees, variables, terror and gravity of this disorder. Agoraphobics- speak to other agoraphobics before writing an article on the subject if you are speaking on behalf of ALL agoraphobics or make sure you state that you are only speaking from YOUR own experience. Thank you.

I suffered agoraphobia for many years. I never gave up hope that someday I would find the answer on how to get over this problem. I never considered it a mental illness but a disability. I did find the answer and lost my symptoms. I wrote a book about my life and how I overcame this debilitating problem.

The name of my book is My Silent Disability. This book will show you what you need to lead a productive life. There is no cure for agoraphobia but there is a physical help that will help with the symptoms and get you out of the house. It is kinda of like a wheelchair but not a wheelchair. Hugs, Yolanda

I have been suffering with Agoraphobia Panic DisorderAnxiety my whole life ,I have been housebound for the last 16 years.I don't even remember when was the last time I left the house.
Please be careful,nip it in the butt before its too late.
Rick

I've been reading everyone's comments and thought I'd just share my story. Maybe for support, maybe for comfort or maybe to comfort someone else.
I just turned 30 and have had severe panic attacks with agoraphobia for 15 years. I have seen numerous counsellors and doctors, been on numerous medications tried acupuncture. Nothing has really helped me. I'm able to leave the house but I have a "safe zone" of a few miles in each direction.
At certain points my anxiety was so bad I did nothing but have attacks and end up in the hospital over and over and over again. I did pretty well when I was drinking but that led me to become an alcoholic and I've now been sober 4 years. There are positives like I was able to get married and have a child but now all I can think is my poor daughter is stuck with a mom who can't even take her places.
Today I had my first panic attack in a few months. I don't panic because I avoid all anxiety provoking situations....but I feel like I'm at the end. I just don't have much left. Suicide sometimes looks like the best option. I wish I could go through with it but my anxiety limits me there too I'm to afraid to kill myself

I have had depression for most of my life. In later years I have agoraphobia, Severe panic attacks, Have had three mental breakdowns. I am afraid of everything. I also have Asthma COPD, Leiden factor V, No one in my family or friends understands. When they brush me off my depression and anxiety gets worse. I HAVE HAD THE SAME PSYCHIATRIST FOR 20 YEARS AND HE DOESN;T CARE. I GET MEDS BUT WHEN THEY WEAR OFF IT TAKES ME FOREVER TO GET IN TO SEE HIM, I AM NOW 72 AND HAVE LITTLE REASON TO KEEP GOING. My husband has Alzheimer's and he tries his best but does not understand either. I am so stressed out and I cry all day. Why would your own family not understand this. It breaks my heart, I was a good mother, friend and love to help others. People avoid me. I have not been to church in years. I am afraid. So ashamed.

I posted this at 1:39am today. I hope someone replies.

I think what some agoraphobics have is called Aesthenophobia. My agoraphobia started with illness and fainting spells and people not being kind about it or getting very anxious themselves. So i started feeling it was dangerous to go out with others to inconvenience them and for myself afraid to be attacked. Times I ended up in hospital people would even get very angry at me, possibly feeling helpless and inconvenienced (like having to pick me up from hospital and drive me home. Now I get afraid to faint in public incase I end up in hospital again and have to ask someone to drive me home. Last time no one would even come to get me and had to pay someone who was all angry about it. I also have issues with people coming to my home if I feel weak. More of a fear now of people seeing me weak or what if I faint in front of someone and they get upset etc. I still have the illness but its treated like conditions can't be comorbid, so its treated like its either/or and not many have much sympathy. I've recovered at times from the agoraphobia like symptoms only to relapse if I faint in public again and feel shamed or judged for it. Here is the definition of Aesthenophobia:
"Asthenophobia is a situation where an individual has a persistent fear of weak spot or fainting. This is a standard phobia, where many people suffer days of distress because of asthenophobia. Asthenophobia is referred to by different names like concern of fainting and worry of weakness. With asthenophobia, it proves to be reasonably difficult to guide a regular life because the victim will at all times fear standing for long, doing any exercise or enjoying games. Asthenophobia normally starts with an incident sometime early in life when the person could have had fainting bouts due to anemia. In such cases, he or she may have fainted in the midst of crowds or roads and may have endured some accident or embarrassment within the process. This incident lingers in the mind of the victim, and so to avoid such an accident or embarrassment in the future, the person might not stand for long, work for lengthy or do any strenuous physical workout routines for a time frame for worry of fainting or feeling weakness. And it is with this that asthenophobia units in. One tends to avoid such actions out of fear and that is asthenophobia. It will not be that asthenophobia is incurable; it can be cured with the precise treatment."

Dear Jeanne,
I feel for you. While I too have depression and anxiety and agoraphobia, my other physical ailments are not as debilitating as yours. We also share being responsibility for a severely ill loved one ( a sister in my case who has advanced secondary MS). Both our loved ones have degenerative illnesses and things will only be getting more difficult for all 4 of us....families haven't got a clue and are nonsupport of depress, and, and agora, and they will never understand BUT YOU HAVE EVERY RIGHT TO EXPECT FORGIVENESS AND ACCEPTANCE WHICH DO NOT REQUIRE UNDERSTANDING. In my family, constant criticism and ridicule devalued me to the point of self-hatred. Yet my ability to achieve academic and 20 yrs prof success did not prevent me from becoming more debilitated and agoraphobic after my home was stolen, my meanie mom died after I was her primary caregiver for 6 years, my father went into nursing home when he could no longer walk, my younger brother stopped talking to me because taking care of himself is far more important than caring for his own family even after sister with MS had her leg broken ( she was and is in a wheelchairAND cannot speak.
To Jeanne: I suggest first see if there is a treatment center near you specifically for anxiety and phobias. As a resource center YOU can educate yourself about more current effective treatment AND YOU CAN EDUCATE YOUR MD about it. If still cannot get different response from him find a new psychiatrist.

My boyfriend was diagnosed with agoraphobia prior to my knowing him. I'd like to first state that I am in no way trying to negatively say anything against anyone truly suffering from any phobia of any kind. I am honestly seeking a way to save my relationship or at the very least, to help the man I love. I've done massive amounts of research on agoraphobia, along with other types of social anxiety disorders because what appears to be his symptoms in no way coincided with my previous understandings of agoraphobia. He doesn't seem to fall in that category even after my research. This is why I'm now going to ask others with this phobia to please let me know if any of you experience these similar patterns or I'd you can help in any way I would appreciate it greatly. I'm at a loss and short of walking a way from a great love I don't know what to do. If I can help him I will. It's my belief that he is misdiagnosed although I'm not sure what the court diagnosis is, I am pretty confident agoraphobia is not it. He doesn't appear to me to have any phobia about public places or open spaces or anything like that. He's not housebound at all. He's good with people actually. He's a little nervous, it seems, when meeting new people, but not an abnormal level of nervous from what I've observed. He does however go from everything's fine to directly verbally attacking me and often for imaginary occurrences at the flip of a switch. This can go on and on and on for hours, even overnight sometimes into the next day. I've interacted with many diagnosed with bipolar and I feel that although it may play a role in his behavior, it's definitely beyond any bipolar behavior I've witnessed before. He won't go out with me (to go dancing, for example) because he says someone will look at him wrong and he'll punch them in the face immediately. He seems to seek out excuses for his fits of rage, to justify them, if you will. If I'm playing a game on my phone and happen to set it down when he comes in the room so I can focus on him He says I'm doing that on purpose to make him feel I'm being secretive and he will bring this and a whole absurd list of other things I'm "doing to him" up in every fight he intentionally creates. Nothing I do seems to affect the creation of a fight. It neither guarantees there will or will not be a fight. It seems that as time goes on there are more and more occurring though. Now it's become minimum of daily. That's if they don't take up the entire day or more. Im not speaking about normal arguments, I mean the type where I'm evil, I'm a giant piece of shit, he hates me (and doesn't), the world is ending because of me, get out of my house, but don't I dare leave, etc etc etc. He'll make me apologize for things I really didn't do, to appease him I'll try to apologize, but oh my god, I can't do that either! I don't know what to do! When he's not in these fits he has I've never met a more loving, affectionate, moral, giving man. Unfortunately, these fits of rage that he seems to have lost all control to are taking over all control and if I can't figure out what's going on and help him help himself somehow then I'm going to have to walk away. I don't want to have to do that. I've never felt so lost, hopeless and helpless. I truly do love him very much. Please help me help him. Inside there is a very good man and he's getting buried by an emerging psychopath.

Sounds very much like Borderline personality disorder.
Highly treatable with Dbt take it from someone that's been there he wont like himself very much and blaims you for his mistakes when looking at a situation!
He will be terrified of losing you to the point of pushing you away!

I understand completely because I have been here for 8 years and hope and pray one day to be able to face my fears. Thanks for sharing this we all need to hear that this condition is real and know one can change it for you.
Thanks again

i suffer from ptsd....i was raped as a child, then assaulted several more times a s a teen. my mom died when i was 13.....after that the panic attacks started...i didnt develop agoraphobia until my daughter was born, a lot of stress and chaos happened in very short order....suddenly i couldnt leave the house alone....not even to check the mail. if my older stepkid was home, or my husband or a friend was there to do offer rides or accompany me, i am ok....i have horrible panic attacks on public transit and in the stores and offices, my daughter has special needs and takes a lot of energy and attention...we can't handle the world together without someone to support us. since i dont drive i am codependent on others and at their mercy...which makes the anxiety worse, especially people canceling or being late, or flaking out......it got better for 3 years, then came back with a horrible, awful vengeance. my rapist died, but we moved back to the town it all started in....there is no help offered for us, we cant find a social worker, the universe keeps adding stress and more chaos....i am not scared of leaving...i just can't do it alone. i freak out before i leave, i have many panic attacks when i am out there.....i have never felt so alone, often suicidal. i feel like i am jinxed, or cursed, or something.....i am tired...of not having help or resources, of struggling and now watching my daughter sit in this caged hell with me. i want to finally thrive, to feel safe, to move forward....and no one can help.