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Escaping and Surviving Domestic Abuse

*Trigger Warning*

In December of 1997 I made the decision to leave my husband. This decision came after four-years of being emotionally and physically abused.  This decision came after repeatedly leaving him and taking our two, young, daughters to live at my parents’ house where ultimately, he would manipulate me enough through apologies and promises, that I would go back. That summer he decided to move us to Alabama, a small town where he still had a lot of family and where he had inherited his grandfather’s home. It would alleviate us of rent and he’d have a job at a cotton mill and we’d be happy. Well, that was supposed to be how the story turned out, but it didn’t.

It did not take long before problems resurfaced. Arguments over money, over his drinking and over his violent temper. There was little I could do right, in any facet of our home life. I was constantly being reminded that he was the one working and therefore I could not do anything without his approval. My job was cooking and cleaning and maintaining the house as well as being available for sexual use whenever he wanted, regardless if I refused. I was repeatedly raped during those six months I lived there, before I left that Christmas. I did not understand I was being raped until much later, because I did not understand you could be raped when married- that a wife still had the ability to say no.

I was extremely homesick in Alabama. I am an only child and my parents have always tried to support me even though we don’t always agree with one another, or get along. My marrying at 19 because I was pregnant was very difficult for them and so I truly tried to spare them the grief of my failing marriage, even though I would ultimately go back home a total of six times, for sometimes 2-3 months and live with them, with the two children. They knew I was unhappy, that he was controlling and had a temper, but not to the extent of what I was experiencing.

I asked to go home for Christmas because I was homesick and after many arguments, he finally gave his consent and purchased tickets for me and the two girls. I did not plan on not returning, however I had discovered I was pregnant prior to my departure and I was devastated. He…was happy. Many things went through my head, from the non-consensual sex that had me in this predicament to the knowledge that if I had another child, I would never be able to leave him. I didn’t have an education or a job because I had two children under 4ys and a baby would pretty much anchor me to a marriage that I was afraid would kill me. We’d had a fight about something, I can’t even remember, but what I do remember vividly is me, in one of the closets of the bedroom crouched down and praying he would be distracted by something and not hunt me down and then him finding me, yelling at me with a sawed off shot gun in his hand and pressing the barrel to my forehead. I was not going to disobey him, again. So, I got on that plane and while I don’t even remember the trip I remember crying at some point, holding my youngest and pulling the older one close against me and telling them we weren’t going back.

People have told me that I am so brave for leaving but it wasn’t bravery. It was survival. This wasn’t some Hollywood-hatched-plan of escape. It was luck. I believe that sometimes the universe opens a door that you may not understand the meaning of until you are in that moment. Going back home was nothing more than wanting to be with my parents for the holidays but it opened up a window of opportunity that only made itself known to me when I opened up my eyes. I needed to survive because I had two small daughters who depended on me to protect them and care for them. I am often asked if I have any advise for women in domestic violence situations or survivors. Here is what I can offer from my experience.

·       It’s not just physical: I wasn’t aware I was being sexually abused/assaulted, repeatedly until much later. Domestic violence includes: Sexual, Emotional, Psychological, Financial and Social abuse.

·       Boundary Building: When you are in this situation you become so acutely focused on pleasing someone else you forget entirely about you. Where you once may have been able to say no, you are unable to because “No” becomes associated with rebelling and violence. If you cannot learn to create boundaries with people you remain a potential target for abuse.

·       It’s not your fault: The abuser cannot take responsibility for their abuse and so it is pushed onto the victim. This burden is not yours. You were not to blame. It is one of the biggest hurdles because it is one of the first things they do to assume control. “You made me do this” or “If you could just do this right, I wouldn’t have to..” You’re not to blame.

·       Remember happiness: You were once happy before things took a downward turn. Remember what it was like to not be afraid, to be happy, to see yourself smiling, or laughing, and to see your kids smiling. Abuse shatters happiness and leaves you as a shell of your former self. It robs your children of their happiness too. You deserve happiness. Children deserve happiness. Hang on to that hope, don’t let it get away from you and you will eventually get there.

I am not a counselor or therapist. This is only my opinion and perspective from experiencing domestic abuse/violence. If you are in an abusive relationship please call:

In the US: National Domestic Violence Hotline at 1-800-799-7233 (SAFE)

[*Wrote this for The Migraine Mantras published Oct. 5th, 2018]

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How My Assault Has Shaped Me

And Shaped My Mental Health

*WARNING* *POSSIBLE TRIGGER* *WARNING*

I’ve been thinking a lot about my rape. Everything in our news has sort of forced me into thinking about a subject that I tucked away for 30rs. I recently wrote about how I feel my assault has perhaps had a hand in much of my chronic illness, if chronic illness/autoimmune disorders are in part, caused by elevated stress. Today, I want to talk about how I feel my assault shaped me and my mental health. To be clear, I am only talking about my assault here as a teen and not including a four-year marriage that was also violent and abusive and no doubt had an impact on all facets of my health.

It was 1987 and I was 13yrs old. I went to a YMCA day camp in my town. Day camp was the closest thing I got to a “camping” experience. My mother was not the out-doors type and because I was an only child, and probably because she needed some me-time too, I was sent to day camp for a couple of sessions. I was always a very introverted child- an INFJ to the core and I wish I had known that then or had come with an owner’s manual for my parents, because it was very hard. Both my parents are very extroverted and it simply did not carry over to me. They felt that day camp would get me around kids my age and I would blossom from the cocoon of introvert-land. No such luck, but I did love going to camp.

To sum up the hierarchy of the camp you had the camp-goers and staff/counselors and also counselors-in-training (CiT). These were kids that were too old for camp and who were 16-18 years old and who worked they’re under the guidance of counselors and would play with and monitor the camp kids. Please keep in mind that these memories are 30yrs old and from a child’s memories. I have always loved kids. I felt like I was an adult trapped in a child’s body. I don’t know if this was because I was an only child, if it was because for a lot of my childhood I lived in neighborhoods without children and where my companions were senior citizens, or because I just got kids. While I had a few friends my age, when we did age-related activities, when we were all thrown together, I spent a lot of time playing and keeping company with, the younger kids and also with some of these counselors-in-training. Among them, were both boys and girls and at the tender age of thirteen, I both idolized them and wanted them to like me, including the boys. But I was 13 and approaching in Junior High and awkward and didn’t feel very pretty. Until, one of the boy-CiT’s eye landed on me. He payed attention to me and whenever he needed help would recruit me. I felt very special.

My day-camp, though I do think they had a special week that was overnight, was not that kind of camp. My parents were extremely frightened of something happening to their only child and in a day and age of “Adam,” they had a good reason to worry. So I did not get to go to the special overnight week that some of my friends were able to attend, however, we did have day trips where we would go to an area with a lake (and forgive me, as this is a place I have not been back to in 30yrs, so my memory is foggy) and where they had areas for art and crafts and other things, bathrooms and showers for after the lake and places that were out of sight, though you were not allowed to wander off without an adult or CiT. This place is where my assault took place. The boy had me wrapped around his finger and so when he asked me to help him get some stuff for a project later on, I didn’t question it and it didn’t seem odd to me that it was in the are we weren’t allowed to wander to. He was a CiT, which was the equivalent to an adult for me and I was glowing with pride that he liked me and trusted me to help him. It was here, away from the others and in a supply closet that he raped me. I remember the surprise and the fear with a terrible acuity. I remember the way he pulled down my shorts and put his hand over my mouth and told me not to scream. I wouldn’t have dared anyway, the fear had me all but silenced and all I could do was cry. He raped me and told me if I said a word, if I tried to tell anyone, that he would hurt me and my parents. After it was over he brought me to the girl’s bathroom and told me to wash up. He left me there and I did as he said, still feeling the horror. I washed everywhere. So even if I had told, I’d already ruined any possible DNA being found. I was a kid. I was terrified. I don’t know how I made it the rest of the afternoon. Mostly, I don’t even remember. I think I slipped into some rote function and did what I was supposed to and when I got home I pretended not to feel well.

I never told anyone. Not a camp counselor, not anyone.

That up-coming school year was horrible. I have no doubt I drove my parents to the brink. Things get fuzzy for me here. I spent a lot of time in detention and I was not doing well academically either. Everything from my demeanor to my style changed. I was more withdrawn than normal; my favorite color was black and I was always seeking trouble. I was experimenting with boys and not in a healthy way. I had it in my head that I brought this on myself and that I somehow deserved it for flirting with this boy because I wanted him to like me. So, my perception of myself in relation to boys was a thing to be used. At some point my parents sought help for me, taking to me a psychiatrist who apparently at some point had been a priest. I was seeing him because I had begun to not eat. Anorexia and bulimia, for me, was a way in which I could control something within myself because I wasn’t able to control what happened to me. I told this doctor I had been assaulted and this doctor did not believe me. I remember recounting to him in excruciating detail what had happened and he told me that it was an imagining. That my brain had conceived this idea as a way in which I would not have to be culpable for my actions. In other words, I invented this horrible experience because I did not want to be responsible for my bad grades, or my mouth, or constantly doing things wrong in school that landed me in detention. To be fair to this doctor, these are my 30yr memories and it is from the perspective of a child. It may not have been how he intended, but it was how it was perceived. This only made me more combative against my parents and they decided that therapy was not working and we stopped going.

Jump forward to High School, I turned my focus on writing. I wrote poetry and fiction and I spilled my pain onto paper. I also fell into some sports and found a way to release some of the anguish I’d been feeling. My behavior in High School was either way, way up in elation or way down. I cycled fast, and there could be days I was good and days where I shut out the world. I knew something was wrong with me but I did not have the words for it. Sometime in my Sophomore year, I think, I went on a choir trip for a competition in Virginia Beach. This was the first time I’d been allowed to embark on such an excursion, by myself (without parents) and I was excited. Everything went well until the night before we had to leave when we were out on the beach and met some men in the military. We were expressly told to stay away, but I was high on life and daring and I befriended two marines. One of them more so than the other and I invited them up to my room (That I shared with 3 other girls). They showed up and half surprised and half dizzy with excitement that they did come up I let them in. Two men who were probably between 18-21 years old, in a room with four girls around 15. I thought I was in love with the one. He held me the entire night and when morning came, excitement and that rush of love drained faster than I can even describe, leaving me with torment and anguish because we were expected to leave. He promised he would write and I half believed him but knew it was unlikely. I didn’t want to go home and I can’t even put into words how quickly and how devastating my mood plummeted. I couldn’t even register the possible danger I had placed my friends in, as I recall their fear when they showed up at our door and when I let them in.

I believe that my assault had an impact on a developing mind as well as developing emotions. I think that whatever made me predisposed to Bipolar biologically, was set-off by the assault and changed the wiring in my brain. I’m not a doctor or psychologist and I don’t claim to know a lick about the biochemistry of it, I’m just saying how it feels in my own head and body. That the body who raped me when I was barely a teenager most likely altered the course of my mental health. I also believe that this alteration predisposed me to an attraction to men who were abusive. I think it’s naïve to believe that events in our lives have no impact on our brain and body. I think in some ways that it is unfair to lay the entire burden on biology for making us this way. That our brains were simply pre-wired for all of this. Can’t it be both? I believe that my sexual assault, and later on my abusive marriage, were integral in making me who I am today. This includes everything from my personality, my quirks and anxieties and my bipolar. Sure, it’s possible that even if I’d lived a charmed life and never encountered the kind of pain I had, that I would have turned out exactly the same way, but I believe pain changes us. And when it’s all said and done, despite it all, I like how I’ve turned out. My experiences have allowed me to become a writer and to share what happened to me with all of you so that maybe, we all heal a little. I feel truly blessed that I can use my platform to engage with other survivors and other warriors out there. We over-come our pain through unity. We use our powerful voices to change things.

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Relationship Between Chronic Illness and Assault

A personal experience #MeToo

I have done a lot of reading about how stress can affect the immune system and how it can have a pretty hefty hand in our over-all health. There are even some doctors who believe that stress is a major contributing factor in autoimmune disorders. This is not to imply a direct cause an effect, but something that I think is interesting and may warrant further review. In my own case of rheumatoid arthritis and fibromyalgia, I can see where stress throughout my life may have had an impact, however, in my daughter’s case I do not seem the same correlation and she also has the same diagnosis. Something to mull over.

My reason for writing this is many. The Kavanaugh hearings and controversy surrounding it has been very difficult for me. In fact, last week was probably one of the worst weeks I’ve had in a long time. The painful memories this brought back affected my mental health, emotional stability and physical well-being. Even I was surprised by the totality of it. Something that I haven’t thought about much in roughly 30yrs, was brought into acute focus. Not only was it brought into forefront of my memory, but the discussions surrounding the Kavanaugh case and the arguments on both sides made me question decisions I made when I was no more than a child. So, I am writing this as a survivor who supports and believes other survivors and as someone who struggles with many aspects of her health posing the questions: 1.) Did the stress of my assault predispose me to chronic illness? 2.) Did it predispose me to my mental health struggles? 3.) Does reliving the experience via these hearings cause more harm?

To answer the third question first, I actually feel that while it has been a very painful experience to listen to the testimony of Dr. Ford and Judge Kavanaugh, that it has in some ways brought further healing through discussions with my husband. A question that re-surfaced not only because of these hearings, but because of the #MeToo movement itself, has been the price of my silence. I never said a word of what happened to me as a kid to anyone. I was far too frightened of my assailant and moreover, I was terrified of what bringing it to trial could mean for me and my reputation. Not because I was a promiscuous teen-ager, but because I’d flirted with him, he was older than me and I felt it would be used against me like “I was looking for it.” Thirty years later, the question that arises from all of this for me and the pain with it is: “Did my silence lead to more girls being assaulted?”  “Should I have said something?” and, “If I saw my assailant was about to be nominated to the Supreme Court, would I bring it all back up?” No easy answer there. And as my husband comforted me he reminded me that not only was I just a kid who was scared, trying to protect my parents from the grief and anguish of not being able to protect me and the ordeal of a trial, but that even if I had said something it would not necessarily mean I could have prevented further attacks. I don’t think that the reliving of the experience through these hearings has caused more harm, but I do think that hearing the issue of assault as a partisan matter has caused some harm. It not only re-injures the child-victim within me, but also the adult who struggles with how assault can be seen as anything but abhorrent and wrong. Not Republican or Democrat. Not something chalked up to boys will be boys or wild antics of a youth. Because while the boy who may have drank excessively and tried to assault someone or did assault someone grows up, never held accountable for his actions, and revered for successes as an adult, the survivor of that assault never forgets, deals with the emotional injury done to her for a life time and may end up with life-long struggles because of that. Though I understand there is only a small window of opportunity to be able to criminally charge someone, and that after that time there is no way to really hold someone accountable, I think the true crime here is that women feel and have always felt, that if they say something they will be the ones to stand trial, they will be the ones to be picked apart, not their assailant.

Jumping to my first question, did my assault predispose me to chronic illness? Sadly, I am unsure. One of the things I believe my assault did, was predispose me to thinking that this was supposed to be how I was treated. There was no longer a boundary between allowed and dis-allowed behavior from boys and later on, men. In High School I was constantly touched when I didn’t want to be, whether it was the juvenile “snapping of bra” or slapping my rear that sent boys into fits of laughter, especially and even more heartily, if you got angry about it. I did not have healthy relationships with boys and that would eventually land me pregnant and married at 19. This was an abusive marriage that I stayed in for four years because not only did I not know how to get out but I believed it was deserved. The job I held during that time was also ripe with sexual harassment, something I felt was just par for the course and all women were treated this way. No one said anything and I simply tolerated the behavior of men who would touch me without permission and just chuckle about it. There was stress everywhere in my life and I can’t even quantitate it. So, while the initial assault may not have predisposed me to chronic illness, it predisposed me to consistently being in environments where sexual harassment pervaded and where I was under continual stress, which may have made me more susceptible to chronic illness.

Looking at my second question, and whether or not it had a hand in my mental health issues, yes. I believe that my assault caused severe depression.  While my brain may have been hardwired for bipolar, I believe that the assault and continuous environments of sexual harassment, coupled with a marriage that was abusive in all ways, exacerbated my mental health and caused my OCD and anxiety and left me with PTSD. It has taken many years to come to terms with things that happened to me and to be able to function as well as I do and more importantly, be happy. Much of it was done without clinical therapy though I do see a psychiatrist who monitors my health, I’ve used writing as my therapy and sharing my story when I can. I’ve never shared my story as publicly as this before, but I felt that with everything going on it was high time. My whole purpose for my blog is sharing my experience of chronic illness with others, so they know they are not alone. My assault left me with chronic memories and I felt emboldened by others who are sharing their experiences to share my own so men and women who have experienced an assault know they are not alone.

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Mistakes Made When Traveling

With Chronic Pain/Illness

 

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

 

  • Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
  • Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
  • IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
  • The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
  • Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

 

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

 

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The Chronic Patient/ Doctor Relationship: It doesn’t have to be complicated.

As a person with chronic illness/chronic pain, your relationship with your doctor is an important one. In many ways, it is the most important relationship you will have because he/she will be directly involved in your treatment and your medication which can alter (good or bad) your quality of life. Many of us however, find this relationship to be a most tenuous one because we often feel that our doctor is not actually listening to us, that instead they are taking a cookie-cutter approach to our treatment and throw their hands up in the air when we express to them that the treatment isn’t helping. Our frustration can lead to a chronic switching of doctors, with this ridiculous hope that if we “kiss enough frogs,” we may find the right one. It doesn’t have to be that way.

Understand first, that the majority of doctors did not go through all their training with the end goal to “manage” chronic illness or pain. They became doctors to heal and you cannot heal a person of chronic illness or pain. This is not to say that these doctors don’t want to treat you, only that they may be fumbling as much in their attempt to treat you as you are in your understanding of your illness. There is a lot of trial and error that goes into treating chronic illness or chronic pain, especially if your doctor is listening to you and not trying to apply some cookie-cutter treatment. It is imperative that you talk to your doctor and that discourse begins when you first meet them.

When you meet your doctor explain what type of relationship you are looking for. Are you the kind of patient that likes to understand their illness beyond the basic understanding? Do you research your illness and the varied treatments that are offered? Tell them. Do you want to be involved in your treatment decisions? Do you want to get to the root cause rather than just applying band-aids to treat the symptoms? Tell them. I don’t believe all doctor’s share the same philosophies about treating patients. You are going to have those that take on a very patriarchal outlook, where they are the ones that diagnose and treat and the patient obediently follows their instruction, and others, who want the active participation of the patient. If we talk to our doctors on that initial visit and explain to them what we want, and what we expect, it will help us weed out those who simply won’t with out ideals.

Understand that when you find a doctor who meets your criteria and whom you are able to build a relationship with that it still may not be perfect. Even if you are involved in your treatment there may come a time that you do disagree with how things are going. It’s normal. Talk to your doctor about it. Don’t let it fester so that by the time you do voice your thoughts they are spoken in anger and frustration. Remember that respect is a two-way street and that most things can be worked out and common ground found if you speak rationally about what you disagree with. I know most of us have been through hell and back when it comes to doctors. We have become inherently distrustful and if not that, there is a constant waiting for the other shoe to drop. It may be naïve, but I still believe that most doctors do want to help us, even when I hear stories of patients who are not being helped. I don’t want to make some broad, generalization about the profession because it is unfair, but I am also human and sometimes I get incredibly upset by what I see and hear first hand and through others. But nothing is ever solved through doubt. All that does is build a wall around you where no one can get in and no one can help you. It’s exhausting putting yourself out there all the time and being disappointed, but keep trying. Finding a good doctor with whom you can discuss and disagree and find alternative treatments that work for you can be life changing. Good luck!

 

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My Bizarre Obsession

Since I was a little girl I struggled with OCD. It began as counting my fingers, starting from my pinky and just going back and forth, from pinky to index and back again. It progressed to an obsessive-compulsive need for cleanliness and when you are a teen-ager and breaking out and thinking it is because you are dirty it can turn into something nightmare-ish. I was somewhat lucky in that not only was I still able to function for the most part, they were compulsions I could hide or be discreet about. I was fifteen when I developed an eating disorder that I personally link to my OCD because counting calories became my undoing. Though I saw a therapist and got back on track with my weight and health, I feel that it had less to do with emotional pain and more to do with OCD. At the very least, it was half and half and while I got better there, it seems that my OCD just relocated to something else. That something else was skin-picking, also known as dermatillomania, also known as excoriation disorder. This has been the most difficult to overcome and I still deal with it presently, though to a lesser degree.

If you don’t know, Dermatillomania is a condition where a person feels compelled to repeatedly pick at their skin, scars and other areas of skin, sometimes causing visible wounds. This is sometimes accompanied with self-harm, though it doesn’t have to, but almost always goes hand-in-hand with OCD. In my case, it was all about the OCD and while I guess you could say that I do self-harm by picking at my skin and causing small wounds, I don’t do anything more than that. It is, in my opinion, the most distressing of my mental health issues of which there is bipolar and anxiety and mild PTSD. It is distressing because sometimes I don’t even know when I am doing it and by the time I am conscious of it I’ve already damaged my skin. It is distressing because the concentration seems to be my face and that is the most visible part of you. It used to be my fingers- that space between the knuckle and first joint- I would pick at and pick at until they were truly destroyed. I got myself so worked up and distressed about infection that I stopped, but just like previously, it simply relocated. The damage to my face is not as severe as what I used to do with my fingers, looking more like I picked at zits than large wounds; I can cover them up with minimal make-up, but because it’s on my face, I feel like the whole world can see it. It’s one reason I am in-love with Snap Chat and filters. If you follow my Twitter or Instagram you know, filters are my friend, and not just because chronic fatigue does not lend to being photogenic. This is an embarrassing and weighty secret coupled with not just a little bit of shame that I have carried with me a long time. In fact, so long not even my psychiatrist knew I was dealing with it until about a year ago.

This condition is not something I had a name for. I had no idea it fell into that OCD group and I can’t even begin to articulate my shame. It wasn’t just about picking scabs or picking at my skin. It was every little imperfection seen as the enemy and to a certain extent, still is. I am currently dealing with a heat related eczema and recurring rash along my arms and face, but the eczema is all over my back  and thighs and so when I run my fingers across my skin at any given time and feel these little bumps or dry patches it sets off this alarm in my brain which causes this inexplicable desire to pick at it as though picking it away will make it disappear and my skin will be smooth again. And like I mentioned earlier, sometimes I don’t even realize I am doing it until my fingers come away with blood. Still, when it’s over, I feel relieved. Like that itch was finally scratched and I can breathe. It’s a lot less now that I am medicated. I take Tegretol and while that is not the go-to drug for OCD, because I also have seizures, it’s like killing two birds with one stone and it’s helped. It was amazing to me when I realized it was helping. Just one day I realized, oh my goodness, some of those wounds are healing or scabbed and gone and I felt saved. Yes, it still happens but between medication and talking about it and using mindfulness as a part of my inner healing, I am over-coming it.

Sharing it has helped me feel less alone and less ugly. Reading about other people who are going through it, or who have gone through it and come out the other side, has also been helpful. I have to work at being positive every day. I have to work on self-love. When I wander off my path I feel that urge more deeply and I do wander off the path. I am not perfect. But instead of chastising myself for it or hating myself for it, I forgive myself and work on veering back to where I need to be. It’s a lot of work. Sometimes it’s exhausting because I don’t just have this one issue, I have a lot of issues.  Don’t get discouraged if you are trying to work through this and fail sometimes. It’s not easy. But know, you are not alone.

Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

 

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