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A Conversation about Mental Illness and Stigma

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The Summer of Growing and Learning

The summer can be a bit challenging for me. This phenomenon didn’t really begin until 2014. I was severely depressed and was hospitalized twice within 3 weeks and began ECT (electroconvulsive therapy) for the first time. It was traumatic to be so ill, it was traumatic to be in the hospital and it was traumatic to have ECT, without understanding the reality of it as a safe treatment.

Since then, my mood usually begins to dip toward the end of May. My last psychiatric hospitalization was the summer of 2017. It’s simply a triggering anniversary. This year was no different. While I have had some medical issues leading into the summer (I fell down some stairs at the beginning of April thus causing a bulging disc pinching a nerve in my lower spine: out of work for 6 weeks, physical therapy, steroid injection = lack of normal routine). When I do not have a “normal” routine, my mood does not respond kindly so this added to the now usual increase in my depressive symptoms.

June was very busy buying, buying and buying everything my daughter would need for 2 weeks at overnight camp. This took thorough organization, planning, seeking out sales and crossing off items on a lengthy list. People who send their kids to overnight camp joke about the tedious and stressful preparation, but, while I laughed on the outside, I was beyond stressed on the inside. I am the ultimate organized person. I thrive on it. I also thrive on being busy, having things to check off of a list. But dealing with my back and not only making sure my daughter’s concrete needs for camp were taken care of, but also making sure I could help her be as ready, emotionally, to be away from home for 2 weeks, it was a lot.

She seemed prepared and we talked a lot about being homesick and that it is normal, expected and that the counselors would help her through it. She talked about her excitement about doing so many fun activities and making new friends. We were all excited and Ken and I held our breaths as we said our goodbyes at drop-off, not because she seemed nervous, but because we were already missing her.

Those first days were quiet, nice. Ken and I commented on the strangeness of the quiet in our house, of the dark bedroom we would peek in at night, door open with no little girl sleeping diagonally in her bed. Then there was the first phone call from the girls head counselor. A little homesickness which led to her not eating much due to fear of “cross-contamination” because of her allergies to dairy, egg and tree nuts. While she has used those words before, it has only been a few times. The camp provides a completely safe environment for kids with allergies and prepares those foods separately to the point of having plates of food for each camper with an allergy separate and labeled. While the food issues continued, the camp provided over-the-top support for her and we were repeatedly told that she made friends and enjoyed her activities and being there.

It was clear that the issue was not really about food but about control. She is a 9 year old only child and therefore, at home, it is mostly all about her. She was away from home for the first time for a long period of time. She was in a bunk of girls her age which totaled 27 with 4 counselors and the female head of her age unit. She ate meals with hundreds of other children where it is loud and sensory stimulating. She does not respond well when it is too loud and has had some sensory issues since toddlerhood. Her mommy and daddy were not there and she was making decisions on her own, which she did well, at times. Unconsciously, the food was a way to control what felt like an out of control situation. When I say that the camp staff went above and beyond, that is a complete understatement, as she took up much of their time while they had to also attend to those other few hundred campers.

While she made it to the last day and said she did have fun (which was repeatedly verified by staff), she is still acclimating to being at home a week later. She is talking about her allergies in a way she hadn’t before, will not eat certain foods she used to before camp. But, she is also actually talking to us. She sobbed the first night home talking about her homesickness and that she was afraid of the food not being safe. While this was so painful to see, we began the conversation that will continue for months in order to process her experience of what happened. At the same time, she is different in a mature way. She brought up the issue herself. She has rarely done that in the past. She was able to talk about it a bit with her therapist last week and as I heard her sobs through the door, I was so proud of her for sticking it out in that office and not running out to me. What a positive example of control!

While Ken and I look at our role in what occurred, regarding the food, we are also maturing. Our daughter is a capable and smart 9 year old. We are changing things regarding how we go about managing her allergies and foods. She will make her own lunch for day camp (and then school) each night. There is no reason that Ken has to do it and continue to ask her what snacks she wants when she says she doesn’t care and then doesn’t end up eating them. She needs to take responsibility but also will gain control over her own decisions.

My brilliant sister-in-law had another idea that we will use, of having one dinner a week where I make something that is “safe” for her, one meal for the 3 of us, and she can decide what she eats: If I choose to make roasted vegetables, salmon and roasted potatoes and she serves herself and eats 3 pieces of cauliflower and a small piece of salmon then says she is full, so be it. If she eats one bite of a potato though, that will not be acceptable and that will also be her decision but there won’t be a cookie waiting at the end of the meal. She takes control and can learn what works for her and what doesn’t. She won’t go hungry, that I know.

It’s time for the three of us to move forward. We will work out the emotional part of what happened at overnight camp and she has said she may want to go back next summer, but for right now, we don’t have to think about that. Right now, Ken and I will grow up with her, leading her on a path of maturity, with expectations that match who she is and remember that she is only 9 years old. Right now, it’s about our health, physically and emotionally.

Summers continue to be a bit more difficult for me but I get through them and I do so with the aide of others. I ask for help when I am able. I speak up. I hope Ken and I can teach our daughter that she has the power to get through difficult times, with the help of others, by asking for help, speaking up for herself and, most importantly, for her needs: to use her voice in order to help herself. I hope she will learn to understand the connection between physical health and mental health and understand more about her allergies and trusting others and, most importantly, trusting herself in that regard.

We have some work ahead of us, individually, and as a team, but I think we are on the right track.

 

 

 

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Having Depression is NOT a Choice – This is Why

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I saw this on Twitter and read it about a dozen times. I thought, “this is me, this is what it’s been like during too many major depressive episodes over the past 5 years.” I shared it on Facebook and realized that simply sharing it only reaches a very small group of people. This scares people. This is honest and open. This is scary. But the part that is missing are the answers. I want to share my answers, my experience, my reality. Personal experiences are the missing link in order to gain understanding about those suffering with what can be a debilitating illness.

1. How would it feel to wake up and not having the emotional strength to face people?
I’ll tell you how it feels. I have felt it on and off over the past 5 years. It is daunting, sometimes an insurmountable goal that you know you can’t reach. I would get myself going on certain days, like days I would see my therapist and the days I work. It is not easy. I have worked in retail for the past 2 1/2 years and people is what it’s about. My mask is sometimes put up and while it has slid off at times, I have always done my best. At times, I choose not to go to synagogue with my husband and our daughter. It’s sometimes been too scary to bring my daughter to a friend’s birthday party. It can be exhausting.

2. To think that time is passing by with no reason?
I felt that strongly today. I had a session with my therapist where I felt misunderstood. While she meant well, it felt as if she were trying to convince me to see things realistically in order to not beat up on myself. I felt my feelings were not being heard. After that, the rest of the day felt odd and I am not even sure how time has actually passed.

3. To feel so alone even when you are sitting in a room full of people?

This is why I have stayed away from people when I have been depressed. Feeling alone when you are alone is one thing, but feeling alone while in a room full of people, even close friends, does not always make a difference. It is a terrible feeling.

4. To have to put on a face and hide your feelings because in your mind you think no one would care anyway?

This is almost automatic for me when I am in a depressive episode, unfortunately. I think to myself that I don’t want to burden my friends any more than I already have. There have been times I have asked my past 2 therapists over these past years, why do people care about me? Their responses were the same: a list of my attributes, reasons why people like me, love me, care about me. Sometimes I believed them, but others I didn’t.

5. To lose friends because you can’t find the strength to go out and you can’t physically be ‘happy’?

Fortunately, I have not lost one friend due to my illness. I don’t know what the odds are of that, but I am aware that it is not necessarily usual. I have heard from others, very sad stories of dear friends who literally disappeared on them because of their mental illness. 

6. To cry yourself to sleep, hoping that tomorrow will be a better day, then when you do try you are exhausted from the night before, and it all starts again?

This may sadden many, but there have been many nights I have cried just as I fall asleep over the past 5 years at the times I have been depressed. I pray for a better day, that I will wake up a bit refreshed and feel better able to tackle whatever the new day brings. The fatigue that my depression causes is the enemy of this hope on some days. It has taunted and paralyzed me. This cycle is more than exhausting, in terms of physically feeling tired, it is emotionally draining as well. This combination can be depleting and debilitating.

7. You try to hide your feelings hoping no one would notice, and more.

This is also a challenge, yet something I can do well, at times. When I am anxious, I can talk a lot. People then believe I am feeling better or well, when what is really happening is that I am not feeling great but masking it with my anxiety. I am actually not always aware I am doing it until I feel my heart beating a bit faster than usual.

8. Now tell me why someone would choose that?

This is truly the million dollar question. Would any of you choose any of this, as well as all of the treatments I have endure(d): therapy 3x per week, medication trials, ECT (Electroconvulsive Therapy), TMS (Transcranial Magnetic Stimulation), ketamine infusions and psychiatric hospitalizations? Any aspect of my experience mentioned above? I can’t imagine so.

Depression is an illness, not a choice.

Saying it is a choice is the largest form of stigma I can think of. It’s cruel. I would move mountains and do anything possible to be rid of my depression, anxiety and OCD. I have tried and will continue to try. To say I would choose to have these illnesses is shortsighted and ludicrous.

I have said this before:

My mental illness is treatment resistant, but erasing stigma doesn’t have to be.