Thinking about Riley and his Legacy

By Shannon Shy

My dear friend (and the dear friend of countless others) Riley Sisson lost his physical life in September 2014 at the age of 25.  I last saw him in July of that year when he, his mom Margaret (also my dear friend), and I rode in a taxi to the airport after the annual International Obsessive-Compulsive Disorder Foundation (IOCDF) conference in Los Angeles.   Riley suffered since childhood under the oppression of obsessive-compulsive disorder (OCD), one of the most debilitating mental disorders known to medical science, and, for years, addiction, the tragic result of attempting to mask the pain of OCD  -- double the torture, double the pain.  After a long period of sobriety, on a fateful day in September, Riley accidentally over-dosed.

If you didn’t know Riley, the following seven sentences from his obituary describe him perfectly:

Those who knew Riley understood he was exceptional. Often drawn to him first by his wit, one soon saw his heart-a big heart- one that embraced all good people. Riley was funny, smart, big and lovable. He was a talented musician and music brought him great joy. His empathy for others, particularly those with struggles and hurt, taught us all a lesson in selflessness. Indeed, he taught us many lessons in his years and his loss will be felt deeply by many. To lose a person so young and so kind and with so much to offer the world is heartbreaking.

I’ll never forget the intense grief and range of emotions I had when I received the phone call from Margaret delivering the news of Riley’s passing - - shock, sadness, dismay, anger (at life and at myself), and uncertainty.   You see, although Riley was struggling mightily, he was determined to fight.   At the 2014 IOCDF conference, Riley gave presentations as part of two panel discussions.  He hit it out of the park.  When he spoke, the audience hung on every word.  He was humble, pithy, witty, articulate, knowledgeable, self-deprecating . . . well, you get the drift.  At the conclusion of his first panel presentation, I approached Riley and said to him that I was really impressed.  I told him that he had a gift and had met his calling.  Riley knew how to relate and his story was impactful.  He was quietly charismatic, charming, and personable- a natural in front of a crowd.  He could connect.   He was intent on battling his enemies with all his might and, unselfishly, intent on doing something to try to help others.    At his young age, he had become a beacon for others who struggled as he did.   On the ride to the airport, he told me he was really struggling.  When we parted, he hugged me and said “I love ya’, man.”  I replied “I love you too.”  Less than two months later, he passed.   Yet, as much as Riley’s death still stings, God’s grace asks us and allows us to look forward – Riley’s powerful spirit lives on.

In the midst of the painful aftermath of his death, many wondered, including yours truly, about what more each of us could have done to save Riley.  And then four amazing people – Margaret, Riley’s sister Sarah, and fellow OCD sufferers and close friends of Riley’s, Chrissie Hodges and Tim Blue -- redirected the energy behind those natural feelings of guilt to something profound and productive.    At his memorial service, they each gave beautiful tributes to Riley and reminded us that we collectively should not, could not, and, most importantly, would not let his death be in vain.  He has a legacy.  Our responsibility was and remains to ensure that it continues to be heard.  They called us to action -- Educate ourselves.  Reach out.  Help those who struggle. 

Margaret had already been involved in helping the IOCDF.  She upped the ante.  To take her son’s legacy forward, Margaret created Riley’s Wish Foundation, which seeks to encourage purposeful actions to serve those who struggle. Taking the lateral and running down the field, the IOCDF recently created the Riley Sisson Memorial Scholarship Fund to help those who want to attend the IOCDF annual conference but cannot due to financial hardships.   If you want more information and/or you want to donate to either Riley’s Wish Foundation, to the IOCDF Riley Sisson Memorial Scholarship Fund, or to the IOCDF, visit the following websites:  www.rileyswish.com; http://ocd2016.org/donate/;  or www.iocdf.org. 

So, my friends, I call you to action too.   Educate yourself.  Reach out.  Help those who struggle.  As my friend Tim Blue so aptly put it, “Do Something.”   I tip my hat to you, Riley.  I continue to think about you.  Thanks for continuing to inspire me.   Love ya’, man.  And Margaret, love ya’ too.  Thanks for continuing to inspire me as well. 

Sincerely,

Shannon Shy, Esq.

OCD Advocate, www.overcomingocd.net

President, Board of Directors, International OCD Foundation

Vice President, Board of Directors, OCD Mid-Atlantic Affiliate

OCD & Addiction

“OCD and SUDs isolate people. Both illnesses can drive a person to disconnect from family and friends. This further emphasizes the importance of social support in recovery.” From Jenike, S., Smith, E. S. & Sisson, R. (2014). OCD and Addiction available at http://www.rileyswish.com/education.

I never met Riley Sisson.

His death immediately afforded me the opportunity to get closer to a mutual friend who grappled with feelings of inferiority and insecurity as one who “should” have done something differently while grappling with not having the answer as to why this occurred. All that while simultaneously facing a personal commitment to show up hours later as the public face and voice of long-term recovery. I was privileged to witness this masterful ally present such an impactful blend of despair yet hope that, as I’m sure happens at every talk, she was swamped afterwards by people sharing validations and connections.

Another mutual friend experienced a series of setbacks. Reflecting on the experience while recuperating in an intensive treatment program she said, “Although maybe I should have known better with all of my experience as a therapist and as a peer recovery coach, I’m doing well now and have re-connected with my supporters!” Riley’s hope and wish personified.

I was also graced by an encounter with perhaps Riley’s most ardent shero of which I’d heard many stories. The palatable yet edgy grief was accompanied by familiar unanswerable questions summarily followed with a singular conviction to persevere in Riley’s cause. He had been enlightened by Alfred Adler’s work stressing the importance of, “looking at… the person in the context of the entire environment including other people… The highest expression of a social being is one who functions in cooperation with others, while helping the group function at a higher level.”

I never met Riley Sisson.

George S. Braucht,  LPC

Brauchtworks Consulting; Email: george@brauchtworks.com; Website: www.brauchtworks.com

How Music Helped My Struggles w/OCD

By Joe Alterman

It had been pure luck that the onset of my most difficult days with Obsessive-Compulsive Disorder (OCD) coincided with a two-year long early evening class that was a prerequisite for my synagogue's confirmation. I didn't feel lucky because I was religious and excited for my confirmation studies or anything like that. Quite the opposite in fact; I was often thrown out of these classes for goofing off and disrupting them. The reason I say that it was luck that these two events coincided is simply because it was thanks to one of these classes that I learned what became my motto during this difficult period in my life: "fake it 'til you make it." 

As a fifteen/sixteen year old who, at the time, was spending most of my days counting in my head and spending 4+ hours getting ready for bed at night, one of the most difficult and age-appropriate struggles for me at the time was the realization that I was no longer "normal". At this point in my life, not being normal was not a good thing. 

Even though I spent almost every waking minute performing compulsions, the only place I could still at least feel normal was around my friends. My closest friends and I were jokesters and pranksters; whether it was our weekend-long prank call sessions, or our ability to recall and act out - in (what we thought were) perfect Borat voices - nearly every line of every episode of Da Ali G Show, I loved my friends and the fun that we had together. 

In addition to being fun and funny people, my closest friends were great listeners and advice givers, people who I looked forward to speaking with during rough times; however, at this stage of our lives this mostly consisted of what to talk to a girl's parents about when they'd pick up the phone [we still had to call girls on their house phones back then].

While I cherished my friends and the advice they gave, I couldn't, yet, bring myself to tell them the truth about me. While I'm sure they would have comforted me and made me feel better about my situation, I still felt that being around them was the only place where I could still feel normal, and I wanted to hold on to that for as long as possible. 

So, as that confirmation teacher advised, I tried my best to fake it 'til I made it. 

Each day I'd go to school, plaster a big fake smile on my face and joke around with my friends (all while counting to eight fifty-five times over and again and taking my tests aurally with my guidance counselor because each time I'd write even a single letter on a piece of paper, I'd be forced to erase and re-write it until it looked perfect, which could take hours). 

Faking that smile and pretending to be normal around my friends was helping - often times, that fake smile would become a real smile simply because I was smiling. However, the feeling that resulted from both the OCD and me not being able to talk to those who I would most like to confide in left me feeling a nearly unbearable amount of frustration, angst and anxiety each day after school. 

I had to get all of this off my chest. It's not simply that I badly wanted to get all of this off of my chest. I absolutely had to. I knew in my heart that there was absolutely no difference between terribly needing to go to the bathroom and the feeling that I was experiencing. I needed to let it all out or I would surely explode - if not literally explode, I would via my obsessions and compulsions, which acted almost as punishment for not getting the release I needed. 

It was at this period that I totally and completely fell in love with music and the piano, and that the piano became an extension of my self. 

Almost every day, as soon as I'd come home from school, I'd run (well, walk as quickly as I could considering the hundreds of spots in the house I'd first need to touch and touch again, the doors I'd need to open, close, re-open and re-close until they were perfectly aligned against the wall, and the other spots that I'd have to step on in many, very specific ways until I'd satisfy the number my OCD told me was my then-"lucky" number) to the piano and just play for the next three, four, five, six or seven hours, and that's where it would all pour out. 

Using my relatively elementary, but rapidly growing, musical vocabulary at the time, I'd improvise for hours on end, playing whatever it was that could best illustrate what I was then currently feeling. 

This became a crucial and necessary part of my life during those difficult days. While I was faking everything all day long in an effort to save at least the last bit of normalcy in my life, the piano quickly became much more than the piano; it became, quite literally, the only place where I could always be my total, complete, honest and real self. 

It gave me something to look forward to each day when I'd be suffering my way through school. It made it easier for me to have real, "normal" fun with my friends knowing that I'd be able to get all the frustrations out of not truly being about to talk to them later that day when I'd sit down at the piano. 

The pieces I'd improvise were either very dark, slow and sad, or happy (if I found joy anywhere back then, it was in music). 

My family was treated each day (save for the times that my OCD forbid me from playing) to my marathon practice sessions, and it was because of this that I learned of the power of the feeling in music. 

While most of the pieces I'd improvise would be relating to my OCD and anxiety, there were times when I'd be playing about something else. One day, my Dad - a very astute listener and knowledgeable music fan - came upstairs during one of these long sessions. 

"Are you upset over a girl?", he asked.

He was right; I had been. To this day I have no idea what it was that differentiated this slow, sad piece from the hundreds of other slow, sad pieces he'd already heard that month alone, but he knew what I was playing about that day and that was a powerful learning experience for me. 

While it was during my college years that I was able to actually begin to become the musician that I wanted to be, it was during those difficult high school years that I discovered and formed my deep bond with music, which was formed purely on how it made me feel. 

When I wasn't playing, I was listening. I was discovering new music each day that either made me feel better about what I was feeling, relief from what I was feeling, or less alone in what I was feeling. 

On the long bus rides to and from school, I'd be listening to Nat "King" Cole, Ahmad Jamal, Sonny Rollins, Ramsey Lewis, Miles Davis, Oscar Peterson, Erroll Garner, Diana Krall, Wayne Shorter and Charles Mingus. Each one of their musics had a specific feeling and role in my life at this period. Mingus' music, for example, was intense, loud, often abrasive and cacophonous; it made me feel less alone. I felt like I was hearing exactly what I was feeling; however, because the music was so powerful and beautiful, I'd start to feel better all at the same time. 

So, whereas playing music was where I could let it all out, listening to music became the only place in the world where I was able to find beauty, relate to it, and let it inside and make it's impression on me. 

Now, almost fifteen years later, the one thing that most people say who comment to me about my music is of a wonderful, joyous feeling in it, and I totally credit this to my OCD. Without having had OCD, I doubt emotion would have become, to me, the most impressionable and most important aspect of music. Being that this all took place at a crucial time in my musical development, I could not be more thankful for how OCD literally made my relationship to music a purely emotional one. Sure, technique is impressive, but the only reason I want to have technique is so that I can play all the feelings I'm feeling; it is not so that someone can compliment me on how fast my fingers move. 

People often come up to me at my performances and say things like, "you sound like an old man who has been through some shit". I'm sure they wouldn't have the same reaction today had the piano not been my main outlook of expression during those dark days. 

It was during these days that I began to realize that the piano was not only a part of me, but that it was also a true extension of my subconscious and unconscious selves. 

I remember spending many days at school excitedly thinking about and planning the music that I'd play later that afternoon, but being totally shocked at what actually ended up coming out. 

If I was frustrated or upset about anything, the cause of those feelings would almost always reveal and resolve themselves during my piano sessions that day. 

It gave me something to be excited about ("I wonder what will come out of me today") and it also gave me a much needed sense of peace during these times; no matter how confused I was about the many thousands of strange and upsetting thoughts going on in my head, I always knew that they'd resolve themselves - or at least come closer to resolving themselves - that night at the piano. 

I eventually did tell my friends what was going on and was sure glad I did. While I did, for a while, lose that sense of normalcy around them, it was because of those important self-discovery sessions at the piano that I learned that being normal was nothing special. In fact, by definition, it was the opposite of special. 

Having the gift to relate deeply and emotionally to music was special, and that sure beat being normal!

While I wanted to be rid of OCD, that realization made it so much easier to be with my friends and not mind not feeling totally normal around them. Sure, I was different than them, but there was no way that I'd give up my powerful relationship with music just so that I could be like everyone else. 

Music was everything to me during those dark days, but the way in which I handled that situation and the way in which the music handled me has shaped everything about me and everything about me that makes me happy about who I am today. Not a day goes by - seriously - that I don't think about how thankful I am to OCD for giving me that opportunity to find myself. 

Towards the end of my very difficult period, I reached out to Sonny Rollings via the guestbook on his website to tell him how much his music helped me during a rough period in my life dealing with OCD. I was shocked when he responded. "Dear Joe," he wrote. "Your comments were appreciated. We all have to use adversity as an opportunity to find a way. So keep a strong mind throughout this short existence. Your examples give us all hope, as all of us here in this life have to struggle."

A friend of mine in the music business often says, "Take care of the music and the music will take care of you." I couldn't agree more completely. 

Born and raised in Atlanta, Georgia, Joe Alterman moved to New York City in the fall of 2007 to attend New York University, where he received both his Bachelor's and Master's degrees in Jazz Piano Performance. Since moving to New York, Alterman has performed at many venues in town including Dizzy's Club Coca-Cola, the Iridium and the Kitano, among others, and has performed at venues around the world including Atlanta's Rilato Center For The Performing Arts, Milan's Blue Note Jazz Club and New Orleans' Preservation Hall, either alongside his trio or with his mentors: saxophonist Houston Person and pianist/vocalist Les McCann. A frequent opening act at New York's Blue Note Jazz Club, Alterman has opened for many artists there including Ramsey Lewis, Les McCann, Philip Bailey (of Earth, Wind & Fire), John Pizzarelli, Hiromi and more. Alterman has released three albums under his name and was recently profiled by legendary journalist Nat Hentoff in the Wall Street Journal. 

On Disclosure of OCD Within the Family

What people literally see when observing someone suffering from OCD barely scratches the surface of what’s really going on for that sufferer.  You might see someone spending a lot of time in front of the sink and conclude, “Wow, they really hate germs.”  Maybe she does, but all you saw was the washing.  What happened between whatever upset her and the decision to go to the sink?  A million debates is the answer.  In the short period of time between discovering that she was triggered and deciding to do something about it that you could actually physically see her do, a million debates covered every single aspect of her experience, from what it means that she got trieggered, to what it means if she doesn’t wash, to what it means to her personal storyline, and how it affects the people around her and the way she’s perceived. 

I receive emails on a pretty regular basis from all over the world in which people describe struggling with debilitating OCD symptoms, most of them completely unobservable because they lack a physical component, who feel completely alone.  They tell me things like, “I can’t tell my parents about this because they don’t believe in mental illness and will just tell me to get over it.”  Or “I can’t tell my partner about this because he will think I’m disgusting and it will ruin our relationship.”   This usually means they can’t access treatment because they would have to do so secretly and either can’t afford to or don’t have the ability to.

For a lot of OCD sufferers, the content of their unwanted thoughts is so painful and abhorrent to them, to even share basic information about their experience can feel like a tremendous risk, even to a family member or partner.  So the expected response to saying “I think I have OCD” is not “Well, obviously…” More likely, the expected response is a judgmental, “What are you talking about?”  This occurs regardless of whether the family member being disclosed to is viewed as generally judgmental or not.  In the centrifuge that is the OCD mind, the good in the world can be hard to see. 

OCD is a treatable disorder, and we need to do everything we can to increase access to treatment.  But it starts at home most of the time.  It starts with individuals connected together as families acknowledging that OCD exists, respecting the pain it causes, and bringing people out of isolation and into a safe light.  The first disclosure can be the hardest.  Here are some tips for making it easier:

Tips for effective disclosure with loved ones:

·         You don’t have to lead with “I have OCD.”  You can.  There’s nothing wrong with it, but not everyone is familiar with OCD beyond what they’ve literally seen, and that’s not much.  Maybe they’ve seen a character portrayed in a movie.  Is that a good representation of you?  Maybe they saw a “funny” meme on facebook.  Is that a fair representation of what you’ve been going through?  If the goal is to open a dialogue and possibly lead to getting treatment without shame, then you might be better off leading with a simple description of your experience.  You might share a bit about what you think or how you feel before coming around to using clinical diagnostic terms.  “I can’t stop thinking about my fear of…” or “I’m struggling to resist repeatedly doing…” could be a place to start.  If you have found a good article or chapter from an OCD book that describes your experience well, asking your loved one to read it can be useful.

·         You can be as specific or as vague as you like if you remember the purpose of your disclosure.  The purpose is to give your family member an opportunity to see you and to empathize with your pain.  So if you have intrusive thoughts about harming children, for example, you don’t necessarily have to share that if the out-of-context shock is going to overshadow the empathic opportunity.  It’s your call.  You could share simply that you have intrusive thoughts that scare you, that are so horrifying it would be a challenge to share them right now, but that you might be willing to talk to a therapist about it.  Let them know that in this moment, you just want them to know that something is going on and you’re in pain and are interested in seeking help.

·         Don’t let your OCD commandeer the disclosure itself by insisting on certainty that you are understood and accepted.  If they don’t have OCD, they won’t get it.  Even if they did have OCD, they wouldn’t know what it was like to be you and have your OCD.  They don’t have to get it 100%.  Your OCD may say they do.  80% is more than enough.  50% is enough for them to see you need support.  25% is enough to reduce criticism and hostility.

·         Don’t use disclosure as a strategy to pitch for greater accommodation of your symptoms.  The purpose of disclosure is to promote collaboration and empathy, not make it easier to do compulsions. The argument of “I have OCD so things have to be done this way” pushes loved  ones away when what is needed is collaboration and closeness in the fight against OCD.

For family members and other loved ones, some tips for receiving disclosure compassionately:

·         Don’t jump immediately into problem-solving mode, dragging your loved one to Amazon to buy an OCD book (you can buy one of mine, that’s ok, of course) but instead take a few breaths to just be there for your loved one.  A hug goes a lot farther than instructions like, “Well, here’s what you got to do…”  The first message shouldn’t be about the unacceptability of his issue.  The first should be acknowledging the pain and sitting with him.  There will be plenty of time to get books, look up a suitable therapist, and get to work on the OCD.  But first, just be there.

·         Don’t pry for more details.  Your loved one with OCD took a brave step into the unknown by opening up to you.  Respect that by making it clear that you are willing to be on the receiving end of whatever she is willing to offer.  Your having more detail won’t necessarily lead to a greater understanding of your loved one’s suffering and could just as easily lead to greater shame on her part for having disclosed more than she thought she should.

·         Don’t immediately stop accommodations even though they are part of the problem.  Rather, work with your loved one on a collaborative strategy for gradually reducing your involvement in rituals.

·         Ask questions about how you can help.  But move slowly.  Your family member with OCD is likely overwhelmed; overwhelmed by having revealed himself, overwhelmed by fear that he may have said too much or the wrong thing, overwhelmed that you think he’s sick, crazy, or dangerous.  Overwhelmed by OCD.  Be gentle.

·         Express gratitude for your loved one trusting you enough to speak about her experience.  Let her know what it means to you to be let in, even if just a little.

If you have OCD, you don’t have to disclose your condition to anyone, even family members.  It’s your experience, your life.  But if you have people in your life who you trust and you know love and support you, letting them in, even just partially in, can have a positive ripple effect on everyone involved.  It can be a motivator for seeking treatment.  It can be a motivator for reconnecting with loved ones and it can be a path toward reclaiming relationships taken hostage by OCD.

Jon Hershfield, MFT is a psychotherapist licensed in Maryland and California, specializing in the treatment of obsessive-compulsive disorder, and founder of The OCD and Anxiety Center of Greater Baltimore (www.ocdbaltimore.com) in Hunt Valley, MD.  He is the author of When a Family Member Has OCD and coauthor of The Mindfulness Workbook for OCD.

Don’t Deny your Mental Illness Relapse

Don’t Deny your Mental Illness Relapse, Prepare for It!

I checked out of the inpatient psychiatric facility facing the world with a bag full of medication and a new label called mental illness. I thought I had gotten through the worst of it. Now that I know what this horrible disorder is, I should be able to ‘outthink it’. I believed I was stronger than my disorder. I believed that the torture and misery was in the past, perhaps just the result of ignorance. I believed that knowing I had Obsessive Compulsive Disorder meant it would no longer affect me.

I was gravely mistaken.

“The meds are great, but I don’t need them anymore. I will just know if I start to feel sick again.” And like clockwork, a couple months after my last dose of the antidepressant, I began to unwind at a rapid pace. The obsessions crept up on me, and like shadows overtaking my mind with the setting sun, everything was dark again. Suicidal thoughts plagued my mind around every corner. I couldn’t escape the anxiety, the depression, and the tormenting obsessions that had been dormant for almost a full year.

The logical explanation was because I stopped my meds, the disorder became unmanageable. But, mental illness isn’t logical. Understanding symptoms in the midst of a relapse does not include rationale. To speak or communicate with someone in a mental relapse expecting logical reason is asinine. It is not a reflection of the human-being; it is a reflection of how the individual perceives the world through the eyes of mental illness.

I have been suffering with OCD and depression for 30 years. You would think that I could quickly point out, understand, and ask for help eagerly when I began to slide into a relapse, right? Wrong. There is still part of me that naively believes I can control OCD anytime, anywhere, and anyhow without outside help. Why? Because I don’t want to believe I am mentally ill. I don’t want to believe with my level of intelligence, I cannot harness power over my brain. It scares me to think that I could be out of control tomorrow. It terrifies me to believe that my perception of the world through my senses can be wrong. It frightens me that my thoughts can be so powerful and convoluted that I may want to die because of them.

But, it is my reality. As scary as it feels, I have to accept it.

The Reality of Relapse

Relapse is a given in most cases of mental illness, no matter how much we will and want to deny it. There is no amount of positive thinking and optimism that can stave off a relapse without vigilance. This can take many years for a sufferer to understand and accept. It is in the phase before this acceptance that the individual is in the most danger.

The element of denial will wreak havoc on one’s life and their loved ones in this phase. If someone believes they are incapable of relapsing, they will be incapable of recognizing when a relapse is occurring. This is not uncommon. The sufferer may recognize symptoms of their illness, but will not want to accept that they are real. This denial can be fueled by many emotions including fear, shame, or guilt.

Fear is the most common denominator when faced with an impending relapse. If one has fallen to rock bottom with their illness, the idea of relapse will associate that individual with the emotions felt at said rock bottom. This feels terrifying. The reality is far different, but fear is a powerful enemy. The sufferer may imagine the relapse as a short freefall back to the lonely and miserable bottom. If unaware how to handle a relapse appropriately, fear may drive a sufferer to embrace denial ultimately expediting the freefall process as a self-fulfilled prophecy.

Shame and guilt inevitably accompany relapse. Most individuals who have hit rock bottom with mental illness understand the pain and suffering they have caused their loved ones. Stigma can riddle an individual on a societal and a personal level as well. Typically before an individual accepts and understands their disorder is life-long and can be managed, it is common to attempt to create distance from it to avoid those negative feelings. When faced with a possible relapse, one may begin to feel the feelings of shame, embarrassment, and guilt they believe they caused their loved ones at one time. The distance from the disorder starts to shrink. Panic can ensue as the feelings create the reality one has tried so hard to distance themselves from. These negative feelings can blanket one’s view of their own life as well as their disorder and exacerbate their symptoms making relapse inevitable.

Another commonality in relapse is individuals may not even realize they are experiencing symptoms. While this may seem bizarre to the average person, it is common for a sufferer. Understanding perception plays a large part in recognizing relapse. If I walk outside and my brain processes the weather as cold, I will put on a coat. If I walk outside and my brain tells me that I should worry about an irrational fear, why would I not believe that? I just put a coat on because it’s cold? Why wouldn’t any of my other thoughts be valid?

When I am symptomatic, I do not only think irrationally, I physically feel things that are not there. Symptoms of anxiety are physical. If my body is reacting to a thought, it absolutely appears real to me. Why would I not believe it? In order to understand my symptoms and my disorder, I have to understand how I perceive things and react to them. I have to figure out the physical sensations accompanied by my thoughts and make an actual decision on whether to perceive them as real or not. This is a very difficult process. It has taken me years to understand, and I still doubt my perception when I am experiencing symptoms. I still need help understanding and convincing me that I am actually experiencing OCD and it is not normal reality. I receive this help from my support system.

How to make a possible relapse easier?

Relapse is never easy. To think one day it will be is setting yourself or your loved one up for failure. A possible relapse should be taken very seriously.

For the sufferer: The best way to preemptively cope with relapse is to understand that relapse is possible and likely. This can eliminate that unwanted fear that it may or may not happen. To understand the likelihood and plan for it puts you ahead of the game.

If and when relapse happens, make a plan on what to do and how to manage it. When relapse does occur, you may be too saturated in your symptoms to know what to do and how to do it. There are many resources you can find to help structure a plan before it happens. (Please see below for recommended sites and plans). Also, educate your support system on what to expect and what to do if you are experiencing a relapse. Often your support system will recognize that something is different about your behavior before you do. Do NOT be afraid to ask for help. Do NOT be afraid to articulate exactly what will or will not help you. Individuals in your support system want you to succeed, so they will want to know how to make things easier for you.

In regards to shame and guilt, understanding that they may be present during a relapse may help lessen their effect. There may not be a possibility of resolving them in the moment, but knowing these feelings are common may ease their impact on your symptoms. It is important to recognize that mental illness relapse and symptoms are NOT your fault. As you progress through recovery and acceptance, it is likely the guilt and shame feelings will diminish. Until then, do not give them power by becoming overtaken by them.

For the Support System: It can feel painful and helpless to watch someone during a mental disorder relapse. But, there are many things you can do during and after to help make the best of it for the sufferer.

Understand that relapse is almost inevitable. If you understand and accept that relapse is part of having a mental illness and expect that it will happen, you are not only preparing yourself, but you are showing immense support to your loved one. This takes the fear out of the potential occurrence. It also gives you an opportunity to plan and prepare your support role when it happens. When you know what to do when a relapse happens, you will feel less panicked and helpless. This will help the sufferer with their feelings of guilt and shame if you are calm and prepared.

As a support, find out how the sufferer wants to be communicated to in regards to symptoms. It is extremely important to know how to talk about symptoms and behaviors with individuals with mental illness. Poor communication can result in exacerbated guilt and embarrassment which may contribute negatively to a relapse. When symptomatic, sufferers may try to shut you out or make you angry. It is important to recognize that their actions and behaviors may be fueled by symptoms as well as fear and stigma. The sufferer feels guilty and ashamed. They may not want you to have to experience the pain. They also may feel as if they have let you down by having the mental illness.

As a support, it is important to practice empathy without verbal validation. If the sufferer is driven by fear, guilt, or shame entering a relapse, it is okay to reassure your understanding of those feelings. It is okay to verbalize these emotions may play a factor. Make it clear that you understand beyond the symptoms the difficulty and suffering relapse can cause. Open communication and acceptance, regardless of the absurd logic will help the sufferer feel less ashamed and validated in their experience.

Most importantly as a support, it is imperative to believe that what the sufferer is experiencing is their perceived reality. To deny what they perceive as real damages trust and may drive them further into the realm of guilt and shame. Even if their symptoms defy all logic and rationale, to them it appears real and sometimes frightening. If they know you believe them, they will be more likely to accept your help and trust your support.

To Sufferers and Supporters Together: Relapse is disappointing and painful, but it can be managed successfully if planned for and executed properly. A few important points to remember about relapse:

·         It is important to stay calm and level-headed as a support.

·         It is important to remind yourself that you have gotten through an episode before, and you can do it again as a sufferer.

·         Just because you have hit rock bottom once, doesn’t mean you will fall that far down again.

·         It is difficult to remember what it is like outside a relapse when you are in it. It is also difficult to remember what relapse feels like when you are out of it.

·         It feels like things will never be okay again when you are experiencing a relapse. It can. It will. Hang on and follow your relapse plan. You will get through it.

·         Your mental illness is NOT your fault. This relapse is NOT your fault. Do NOT blame yourself for this illness.

·         Relapsing feels very lonely. You are not alone, though. Reach out to your support system.

·         Being hospitalized is not a death sentence. It is a necessary place sometimes to find baseline in a safe and controlled environment. If you need hospitalization, do not feel ashamed or embarrassed.

·         Although relapse is oftentimes inevitable, you can be proactive and successful in managing it and avoiding it.

·         There is no shame in asking for help. Don’t wait. Do it immediately.

Even though I experienced all of the negative emotions associated with relapsing, I survived my first bout. Afterwards, the possibility of occurrence was embedded within me. It took me a few months to get back on my feet after the first relapse, but it helped me understand the process and plan for the next time.

Since my first relapse, many weeks have been carved off my relapse timeline. The last episode took roughly 3 weeks to get back to baseline. Even though it was painful and I didn’t believe it was a relapse in the moment because of my perception, I went through the motions of my proactive plan. It worked. It will always work as long as I understand that relapse is possible, I accept the fear associated with it, and I don’t allow the shame and guilt to dictate the outcome.

I can choose to live in fear of my illness or I can choose to actively manage it. I can choose to live blanketed with the stigma surrounding mental illness or I can choose to fight it for myself and others. I can choose to deny that relapse is part of my journey, or I can accept and prepare for it.

You can too. Never give up.

If you would like more information on creating a wellness plan for relapse prevention or management, please visit the following websites:

http://peerassistanceservices.org/wp-content/uploads/2013/11/Relapse-Prevention-Plan-Form-Mental-Health_1.pdf

http://www.recovery.org/topics/relapse-prevention/

http://mentalhealthrecovery.com/

Thank you for reading,

Chrissie Hodge