Self Care Toolbox

This post was submitted by "Kyri L.," our first outside contributor to this blog. Kyri successfully manages "a cocktail of disorders" while holding down a full-time job at an IP firm, thriving as a free lance artist and leading a fulfilling social life. Kyri's five tools for self care are excellent strategies for loving yourself while you are in the midst of treatment as well as maintaining your gains so that you don't relapse. Thank you, Kyri for sharing your voice! I’m writing this on a bad day. Font size is set to 14, so I don’t have to squint to see my text. I haven’t gone to see an optometrist in a few years, and the fibromyalgia is making my vision a little unstable sometimes. I cried a lot today too, and my eyes are unhappy with focusing. I feel an anxiety attack crawling at the base of my skull. Thinking about chopping vegetables for dinner makes me want to lie down and nap for a long, long time. It’s on these days, the ones where I break down and hope nobody notices, that it’s most important to focus on the positive and put on a brave face. You have to do that, when you have the miserable cocktail of disorders that I do: fibromyalgia and hypermobility syndrome, diagnosed in the last few months, and some older arrows in my side, Major Depressive Disorder, General Anxiety Disorder, Post Traumatic Stress Disorder, Irritable Bowel Syndrome, and some mild Obsessive Compulsive Disorder to balance it all out. These are things that influence me, that are part of who I am and how I live, but they don’t define me; I may struggle to stay on top, but the fact of the matter is, I win against this health-beast more days than I lose. I’m a champion for getting up every day, getting dressed, going to work. For going to each and every one of my appointments on time (as long as the subway is running smoothly). For trying again and again to find just the right way to dodge symptom bullets and sneak more productivity into good days. Not just a survivor, but a champion of my circumstance. The best things in my self-care toolbox are as follows: 1. Humility. Being disabled is embarrassing, awkward, and hard. It involves telling strangers every day that I have limitations. But because I’ve accepted this aspect of my life, because I don’t cling to pride that will harm not just my mind, but my body, I’m able to reach out and get help when I need it. I ask for a seat on the subway each and every day on my way to work, and for that I get to save energy for more things I want to do. It was incredibly hard at first to speak up and ask for that help. It took me promising myself I would ask every day, even on good days, until it became a force of habit. You don’t have to disclose everything to get help, either. I usually say, “Can I have someone’s seat? I have bad knees,” and that’s enough. Maybe the stranger who gives me their seat is imagining I was an extreme sports junkie and messed up my knees being a total badass. 2. Forgiveness, of the self and others. It’s so, so necessary to be kind to yourself, to love yourself, but I think the best manifestation of those things is self-forgiveness. Don’t beat yourself up for missteps. If I didn’t brush my teeth today, that’s okay. I can always brush them tomorrow. If I forgot to send a card to a loved one for their birthday, I’m not a bad person. My illnesses just make me forgetful, and I’ll write it down next time. Forgiving yourself the mistakes you’d forgive of others is one of the single best things you can do to stay positive and on an upward path. One way I like to do this is to personify each of my issues into a dog. Sometimes the dog won’t do what you want it to, or even cause major problems, but it’s very hard to stay mad at a dog. It isn't malicious. It didn’t do anything for the sole purpose of making your life miserable. It’s just in its nature sometimes. And that’s okay. You’ll run into people who don’t understand your illnesses, too. It’s better to forgive those people, even if they’re rude or even callous, whether they meant to be or not. Whatever they did might have been horrible, but it’s better to accept it and move onward. Holding grudges takes up mental space that you don’t have, and could very well make your health worse. 3. Prioritizing everything. I’m an artist, so this can be a hard one when I have five different creative projects bouncing in my brain all wanting to come out at once. The only way to efficiently use the energy you have though, is to decide what’s important to you, what isn’t, and ranking those on a day to day basis. It can be gut wrenching to admit to yourself that you might not get to reading that classic novel until a year from now, because other things are more pressing, but it keeps your life concrete and easy to manipulate later if things need to change. It makes it a lot easier to block out your energy, and know immediately what tasks you can abandon on bad days without guilt. Being realistic about what you can and can’t accomplish, and being up-front to others about those limitations, can take a lot of the stress out of your life. 4. Recuperation Day. Every weekend, usually on Sundays, I do almost nothing. I let myself sleep all day if I need to. I don’t get dressed. I don’t do anything that requires much concentration or energy. It’s a day for recharging, for fortifying myself for the next week. I know it’s there for me at the end of every week, so if Wednesday is really hard (today is Wednesday), I know I just have a few more days until I have no responsibilities except for listening to my body’s needs. This is one of the biggest things that got me through college to graduate cum laude. Scheduling in a day to do absolutely nothing helps keep my energy reserves from depleting entirely. Of course, you have to be stricter on yourself every other day of the week. That goes back to priority: in order to have Sundays off, you have to prioritize tasks to be done during the week ahead of time. 5. Talk about it! If you don’t feel comfortable being open to everyone about your struggles, find a few people who you trust enough to talk to and verbalize it. It really helps me put things into perspective and understand them better if I say it out loud. It’s best to find people who aren’t directly responsible for helping you, though, so they don’t feel an emotional burden from it. Online communities are great places to find people with similar experiences, or who are just willing to listen, and there’s very little pressure involved in the conversation. It helps me to listen to other people’s problems too. If someone is open to advice, giving it to them is something that makes my own problems feel a little easier to tackle. The above is not an exhaustive list, but those are some core things that keep me going. I may have to take my life day by day, but even with my extra challenges, I’ve accomplished amazing things. I graduated cum laude from college with multiple awards and two minors. I’ve been in a few gallery shows with recent work, and have a great community of artist friends to keep me creating something every week. My tentative beginnings at an Etsy business have been more successful than I thought they’d be. I have a great office job at an IP firm that truly values its workers, something that has proved invaluable to me as I’ve navigated the minefield of new diagnoses. I have a happy little family in my girlfriend and our odd-ball cat (who, funny enough, is also disabled - he has FIV, asthma, really bad near vision, and some anxiety and battle scars from living on the streets before we got him). I have three siblings who are the world to me, and a mom who will call any time I need a shoulder to cry on. You know, after all this, maybe today isn’t so bad after all.  

Relapse and Climbing Back Up the Hill to Recovery

One of the most discouraging parts of having a mental illness is when you think you have conquered your symptoms for good, only to fall back into that deep black hole, and then you have to start the journey of treatment all over again. You have to go through the process of finding a therapist, dealing with health insurance, and navigating the healthcare system, not to mention doing all of this while you are sick and overwhelmed with life unless you are lucky enough to have someone else do it on your behalf. Once Voices for Health is fully launched, we will be able to take care of all these details for you so that you can just focus on getting better. But for now, I want to devote a post to sharing my experience with relapse and recovery since this is a topic that virtually everyone with a mental illness can relate to. Pretty soon, Voices for Health will have an e-Support Forum up where people can talk with others who are experiencing similar challenges. In the meantime, if you are struggling with any of the above, feel free to contact me. I’m always here if you need support. Believe me, I “get it.” If you prefer to skip past my story below and just read my message of hope to those of you who are discouraged about the prospect of going through treatment again, click here. In a future blog post, I will offer tips for recognizing when you are about to go down that slippery slope, so that you don’t relapse again. When my OCD symptoms started to reappear at age sixteen, I was lazy and gave into my compulsions. After fighting so hard for my life I thought all the hard work was done. I had been virtually symptom free for close to two years and it never occurred to me that OCD could come back. I thought I had conquered my illness for good. I didn’t fully understand that once you have OCD, you always have it. It’s a chronic illness. You can put your symptoms into remission, but to be “OCD free” you must constantly monitor and control your tendencies. You can never let your guard down. The same is true with depression. My mother was horrified. She had also thought that my OCD was gone for good and was puzzled by how it came back full force. She hoped I had learned enough from my work in therapy so that I could do treatment on my own, but the obsessions intensified so quickly that by the middle of my junior year of high school she was back on the phone with my therapist, Denise asking for help. I’ve never felt any shame about having OCD. I never asked to have it. I was born with it. But I did feel shame in allowing it to come back, especially after being featured as a success story on Inside Edition the previous year. I didn’t think I deserved to be on that show. How could I tell other people to work on their problems when I couldn’t keep my own under control? What kind of role model was I? I became depressed again which only made my OCD worse. Denise told me and my parents that it is common for people who have successfully dealt with OCD to relapse after a period of remission because they feel like they are on top of the world and are no longer vigilant about managing their symptoms. I wanted to go back on national television and issue that warning to people with OCD across the nation. “Don’t let this happen to you. Don’t be like me. Once you get better, make sure you stay better.” This time, it was harder for me to find the motivation to work on my OCD. As bad as my symptoms were, they were not as severe as when I was thirteen. Back then, I had no life at all and Cognitive Behavioral Therapy was my only hope for ever leaving the house or having any personal hygiene. Now, my OCD made life miserable, but it was easier to put off doing exposures because I was able to live with OCD even though it was significantly interfering with my life. My motivation was strongest when I hit rock bottom. Still, I recognized that I needed to get to work again or else before long I would hit rock bottom. This was no way to live. It had taken me two years to get better the first time and it took me a year to get better again, but I did it. Eventually, I will have more full story on this site. A part of me wondered what is the point of getting better if I’m just going to keep getting sick? If relapse is always a possibility, why not just end it all? I didn’t want my life to be a constant cycle of treatment and recovery. Denise told me that mental illness is like falling down a slippery slope. She assured me that if I remain vigilant about managing my symptoms and ask for help when I first notice I am sliding down the hill instead of waiting until I’m half way down, I will never relapse again. It’s much harder to get better when you have to climb all the way back up the hill. If you seek help as soon as you start sliding, you won’t have to start at square one. As usual, Denise was right. I am now 33 and have not relapsed since I was sixteen. There have been times when I came close, but I have always sought help for myself before things reached that tipping point. I am not symptom free, although I hide my symptoms well enough so that no one realizes what I am truly going through on the inside every day. What makes me a “survivor” of mental illness is that I manage my symptoms so that they don’t take over my life and interfere with my ability to function. I have worked too hard and have way too much to lose to throw it all away. And the same applies to you. My mother (who died when I was 20) sacrificed much of her life to make sure I had a chance to live. I owe it to her and to myself to not give into my depression and OCD. I have my career, my apartment, my family and friends. Those things are worth fighting for. I am worth fighting for. So, if you have relapsed and are feeling discouraged by the prospect of going through treatment all over again, my message to you is this: Don’t feel ashamed like I did. You are human. You thought you had conquered this thing for good, but then you fell down the slippery slope before you realized what was happening. Don’t beat yourself up and feel guilty. That will just make things worse. What matters now is that you do something to fix it. Don’t hope your symptoms will improve on their own because they won’t. Now is the time to take action so that you don’t keep falling. You owe it to yourself to get your life back. And once you get better, you don’t have to go through this hell again. Your life doesn’t need to be a never-ending cycle of treatment and recovery. The key is to find a good therapist who can give you a toolbox of strategies to use when your symptoms start to return. That way you can manage them on your own. And if you feel like you can’t do it alone, there is no shame in going back into therapy. Whatever you do, don’t isolate yourself. If you are willing to open up, most people will be compassionate and the ones who make fun of you were never true friends to begin with. They aren’t worth your time. I firmly believe that the outcome of our lives is determined not by the hand of cards we are dealt, but by how we play those cards. Fate can send us disappointments and opportunities, but it is up to us to act on them, changing the things we can and accepting what is beyond our control. If you fold your hand too early when life gets difficult you will never know what is waiting for you at the bottom of the deck. I would rather stay in the game and see what happens. Otherwise, I will live the rest of my life wondering “what if?” What if I had taken that chance? If you lose the first hand, fine. Try again. If your symptoms come out of remission, get back to work. Keep playing until the cards are gone and your natural time on this earth is up. There is no reason why anyone should ever be ashamed of having a mental illness. No one asks to have OCD or depression anymore than anyone asks to have cancer. The only thing to be ashamed of is not doing something about it. You just have to take the first step. You are worth it. You are worth taking that chance. Photo credit: Paxson Woelber

Danielle’s Story

While this blog is in the early stages of development, most of the posts will be written by me (Danielle), co-founder of Voices for Health. I’d like to use this initial blog post as an opportunity to introduce myself and explain why I started this organization. I am a survivor* of Obsessive Compulsive Disorder (OCD), Major Depression Disorder, anxiety issues, a non-verbal learning disability and childhood epilepsy. Phew, that was a mouthful! Sometimes, I can’t fully grasp or believe all that I’ve been through because no one who met me today would have any clue that 20 years ago, I was housebound and urinated on my mattress because I thought the toilet seat would give me AIDS. I tried to end my life several times and was hospitalized for major depression and OCD. When I was thirteen, my mother was told by several Harvard-trained doctors that there was no hope for me and I would have to be put away in an institution for the rest of my life. I was standing in the room when one of these doctors gave my mother my “terminal” prognosis. My mother took her check back, walked out of that doctor’s office, and said “I will find someone who will help her and it won’t be you.” At age fifteen, I was interviewed by Inside Edition/NBC as a success story for beating the odds of OCD when the Boston medical establishment had deemed me to have zero chance of recovery. Four years later, my story was re-aired on Good Morning America/ABC while I was interning in Senator Edward M. Kennedy’s office in Washington, DC, working on mental health legislation. Today, I hold a Master’s degree from a top university and am a successful health policy professional, working for the federal government. Most importantly, I live independently, pay my own bills and can take care of myself. I started Voices for Health because I recognize that I am very fortunate that none of the traditional barriers to care prevented me from receiving treatment, and as someone who has gotten better, I see it as a personal calling to do my part to make sure other people with mental illness have the same opportunity to live full, successful lives. One in five Americans lives with a mental illness, but over 60% of them do not receive timely access to services. My personal mission is to use Voices for Health as a vehicle to change that statistic by empowering more people to seek treatment and removing barriers to care so that more stories can end like mine. If I can make a difference in even one person’s life, I will feel like all the challenges I faced have a silver lining. I started this blog to let people with mental illness know that they are not alone and that others have experienced similar challenges and found ways to successfully manage their symptoms. When you hit rock bottom, it’s natural to feel isolated, so knowing there are other people who “get it” can be immensely comforting and uplifting. As a friend with depression told me, “only people who have gone through this understand people like us.” We are members of a community that none of us asked to join, but as with any community, it’s important to be there for each other. After all, you never know when you might be the one who needs support. My life is proof that if you have the will and the resources to follow through with treatment, recovery is possible, no matter how hopeless it may seem. A link to my full story will soon be available on this site. *To be a survivor of a mental illness is to live a successful life while having a mental illness. It doesn’t mean you necessarily need to be symptom-free or in remission. OCD and depression are chronic conditions, so while I have learned to successfully manage my symptoms, I continue to struggle daily. I have relapsed in the past and now have the tools to advocate for myself and seek help if my symptoms start to worsen. Although I am a “success story, I am the first to point out that I am human and not a super hero.

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