Unusual Road to Recovery

[greentea]

Dear all, this is my first post but I've actually been coming to this forum for over 10(!) years. The primary reason I never posted was because my emetophobia was so severe, simply reading or writing about it escalated the sensitization. Instead of being a source of inspiration, I used to feel worse after reading recovery threads because I felt those people were so far in their progress, a concept that wasn't remotely feasible for myself. So I'd lke to share my story here, just in case there is anyone reading who feels they're in the same position, and to remind everyone there is always hope even if it takes longer to reach it.

A basic background of my phobia (I'm now 26): I had a very happy childhood although I was predispositioned to anxiety disorders based on genetics, overprotective parents and my own personality traits. The last memory I have of feeling "normal" was around age 6-7 and the emetophobia developed swiftly after that. That last time I vomited was around age 12, and my phobia took a classic textbook course in the intervening years. Fear of germs, fear of norovirus (not leaving the house when hearing about an outbreak on the news), fear of losing control, of eating food I didn't prepare myself, hypochondria and overwhelming terror of maybe having to be sick in future because of pregnancy/migraines/appendicitis/any other illness.

I had two courses of therapy, one in 2001 and one in 2005, in an attempt to wean off the phobia but with marginal success. In both cases I felt the therapists had too little understanding of emetophobia, and I was still so phobic that I preferred to avoid facing the topic head on, and spent the time in therapy exploring other everyday issues in my life instead. Back in 1999/2000, I first found online resources on emetophobia but read that it was "uncommon" and "hard to treat", which compounded my resignation about ever overcoming the fear. It was only in 2011 that I realised how much research have been done specifically targeting emetophobia, and I think there is enough material out there now to help any emet recover significantly through self-help.

The hardest step for me was to even admit I wanted to recover. As long as my life was going well, I chose to escape the phobia with positive distraction. Despite the intrusive thoughts and behaviour, my life was good and I didn't want to be reminded of it. The only times I got a "kick" to face the phobia was during the dark hours after a particularly bad panic attack or episode. But I would feel better in a day or two and then throw myself back into enjoying "safe" pleasures in life. I felt blessed that I was young, healthy and successful, factors that meant I could ignore the phobia as it didn't pose any immediate threats.

In my story, I say "unusual road" because what finally pushed me into taking action was probably every emetophobe's worst nightmare come true. Last month, I was diagnosed completely unexpectedly with a life-threatening illness. Ironically, I attributed a lot of symptoms over the years as psychosomatic due to the phobia. Headaches, muscle tension, hair loss, fatigue and difficulty thinking clearly were classic indicators of stress and post-panic mind. Unfortunately in my case they were also caused by systemic lupus (SLE). A routine blood test showed I had high levels of antibodies that attack soft tissues in my own body. The illness can flare or subside unpredictably, and I have a much higher risk of pregnancy complications. The phase afterwards was the most traumatic experience of my life, made infinitely worse by the existing anxiety and panic.

But this experience opened up some strange revelations, that I imagine a lot of emets don't go through, who are of course very lucky to be physically healthy. In the process of grieving for 'my old life' I realised this was the chance to leave my fears behind. Additionally I HAD to overcome the phobia to make my future life and potential treatments bearable. It was almost funny considering all the effort I took for 20 years trying to control my outside risks of getting ill (food preparation, hand sanitizer, avoiding crowds, flatmates, offices), that the biggest enemy was produced inside my own body. Emetophobia is my fear of losing control, and I need to deal with the fact that my life will be entirely unpredictable, for better or for worse.

Fortunately, the current treatment for my illness is still within the range of my phobia. But I realised in order to stay sane, I need to beat the phobia for tougher times down the line. I'm currently working with the Anxiety and Panic Workbook 5th Ed, the Emetophobia Recovery Program and the desensitization imagery on Sage's website. Sage's own story on her health triumphs also inspired me...I remember reading it once in 2005 during a phase when I was literally living on "bananas and crackers" but thinking how impossible the notion of recovery was for me back then. I'm definitely not "cured" right now but for the first time in my life I can visualise my life after this phobia, and the found the determination to face the challenge. I realised that if I hadn't received the diagnosis, I wouldn't have felt "up" for tackling the phobia for many many years to come.

When listening to some of the material, there was mention of how your brain makes neural pathways in connection to fear. My emetophobia is the result of irrational connections reinforced over two decades. In the weeks after diagnosis, I went through a traumatic carousel of feelings and fears. But remarkably, I realised I was making "healthy" and "rational" neural connections in reaction to a much more threatening condition. Knowing that my illness was found early, and I could very likely have a normal life expectancy feels like being given a second chance at life.

The experience created strange and conflicting thoughts when combined with emetophobia. One of the panic exercises was reminding yourself that "Anxiety can't kill you". Yet for 20 years I FELT like it could, and have a long road ahead to reprogram that thought. In comparison, just 4 weeks after receiving a diagnosis of something that actually COULD kill me, my mind has decided it's not actually that scary. It's more a reminder to live my life to the fullest and not in fear of something that *could* happen because it might never. It's proof that in an unexpected way my mind IS still capable of making healthy pathways and it can be applied to fix the irrational pathways of the phobia. I realised that I was more scared of vomiting than death. My only fears about death are related to vomiting (eg I would hate going through a treatment cause it might make me sick").

If I had the option of living with a lifelong psychological problem or a lifelong physical condition then I would choose the latter. Even though more dangerous on an objective scale, it makes your fears rational. It gives you perspective that makes you WANT to get the best out of your life. With emetophobia, I felt trapped in a life where I assumed I would live normally but I was only consumed by anxiety about the phobic triggers that could happen in those years. I feel like I was 'given' another illness so I could finally get rid of the one that controlled my life for so long, and the thought of that is very liberating instead of scary.

Sorry that this was such a long read. It helps me to finally be able to write everything I've kept inside all these years and also remind anyone reading this that there is always a way out. If you're fortunate enough to be healthy, then start taking small steps to improving your fear. Buy some books on Amazon, listen to the Emetophobia Recovery Program tapes. I considered myself a hopeless case of emet, but I was amazed at how thought patterns can shift just by exposing yourself to literature. Fingers crossed that the next 6 months will go well for me. I'm still quite scared as it's early days in my lupus treatment and I'll have to undergo more tests to confirm things are in control. The emet recovery is a positive and healthy distraction too, the thought that I'm investing twofold in my future wellbeing .

[andee]

Thank you so much for your inspiring post...best of luck to you and keep us posted!! God Bless...

[AbsolutelySweetMarie]

My mother has SLE... I've seen how hard it can be. I wish you the best of luck in managing your Lupus and in continuing your recovery!

[ssjj]

I found your post really interesting. I think I can somewhat relate to it, the impossible view of recovery and just pushing my phobia aside every day in an attempt to kill it. By what I have read it sounds like you have a good idea about your phobia, which seems to be the beginning of recovery. I do hope you have successful treatment and make sure to tell us how it goes!

[hairyfairy]

Reading your story makes things easier to put into perspective, because I`m one of those people who tend to dwell on their misfortunes. I`m grateful that I don`t suffer from anything serious.

[stefanie]

I have lupus SLE as well I was diagnosed when I was 21 and I'm 27 now. It's a tough road to travel but I am not in remission and living a fairly normal life. I've had emetophobia since i was very young and having lupus plus emeto was not easy. I had extream n* and came very close to v* being on certian meds.

I think the lupus was what make my emeto worse and my germaphobia (mysophobia) worse because my immune system was low (because of meds) and the doctor warned me to be careful I can catch things fast. I was soooo scared of germs and v* that I was a basket case.

I have since relaxed a bit but I 'm still struggling wth my emeto which at times is an uphill battle.

It's nice to know someone else with lupus and emeto and I wish you all the best in your journey to recovery keep us posted

take care hob

[greentea]

Thanks to everyone for your replies. Stefanie, it's such a relief to know someone else with lupus and emet...when I was diagnosed I thought I would go completely insane with the combination of the two. Thinking back, I realised that lupus caused many incidents of unexplained n* and panic in the past 5 years which in turn kept making my emet worse. Ironically, I assumed it was because I was catching germs and would go crazy with the hand sanitisers/food hygiene without realising it was all coming from inside my own body :P.

A little update, in the three months since this post I've made a lot of progress. I'm almost shocked at the effectiveness of exposure therapy...and wonder why I spent so many years imprisoned by the fear when all it took was the resolve to force myself to persist with exposure. Basically I've been using Sage's "Exposure to Vomit" resource in combination with the "Muscle Relaxation" and "Candle Visualisation" Emetophobia Recovery Tape.

For each session I look at an image and listen to one of the two recordings until my anxiety decreases. Over time, I work through the heirarchy always beginning from level one and 'recapping' all the images until reaching the place I'm currently at (level 7). When starting the exposure, even the cartoon drawing of the man holding his stomach made me anxious so I would have never dreamed that the desensitization works so well as long as you stick to it.

The recovery is supported by real life progress as well, as I feel a palpable decrease in anxiety to certain situations that would have freaked me out before. On a holiday recently, my bf drank too much and got up in the middle of the night to v* in the bathroom. I heard everything but amazingly, didn't panic and have emet flashbacks of that night. Last week, he caught a stomach bug and I was able to kiss & interact completely normally (I was so used to emet, that I reflexively waited for the anxiety to hit, and the urge to disinfect and wash hands...but it wasn't there!) In contrast, several times last year I had panic attacks when he mentioned having a stomachache and had to come up with excuses to leave the house.

I still have a while to go before I can not panic at the thought of myself v* but I already feel so much better than I have for years. I can only recommend the exposure system, it takes motivation but it actually works.