Stuck in the Sick Role: How Illness Becomes an Identity

By Melissa Stennett Deuter

Imagine being hit by an 18 wheeler and you try to get up to walk to safety with a broken leg and arm, a concussion, it’s dark out and you’re alone with no one to help you. Disoriented, in pain and alone. This is what it feels like for me living with depression and making it to the shower or simply living life.

But still, making the decision to begin my journey to Wellness was terrifying. I felt too broken to help myself. Recovering from a crisis, hospital stay or just struggling from the tremendous illness can be discouraging, but we can get better. Recovery is not the absence of symptoms it’s living life in spite of having a diagnosis. There are things that we can do to help us on that path to Wellness. When I started on my path I took it slow. I knew that it was not going to easy or quick. I accepted that. For me the small steps I took weren’t so small. They were huge and down right exhausting .

"Recovery is not the absence of symptoms it’s living life in spite of having a diagnosis."

During the darkest days of depression, like most people with this disorder, I couldn’t function. I lost my job of 5 years and after 2 years in college, I quit going. I couldn’t focus; I didn’t care anymore. Anxiety and panic attacks were consuming me every-time I was away from home. I didn’t know how to cope, so to keep the panic at bay, I stayed home. It seemed like running into someone I knew while getting my mail or at the grocery store was too much to handle. The looks I got, the many questions and not knowing how to answer, the phone calls that stopped coming in from friends and family. My depression got so severe that I didn’t have the energy for cooking, cleaning, showering, brushing my teeth, or even watching television. The dishes piled up, as did the trash and clothes. My meals, about once every 3-4 days (I think-those days were a blur), basically became a quick ham and cheese sandwich that I ate while walking back to bed. I probably spent about 18 hours a day in bed under the covers with the curtains closed.

Here are some basics on a journey to Wellness to help you on your own journey.

Get out of bed. Sometimes getting out of bed can be a challenge. Start small. Get out of bed and sit in the living room or outside for an hour. Brush your teeth and comb your hair. Men- shave, trim your mustache or beard. Take a shower and put on clean clothes. Open the curtains to let the sun shine in. Read a book. Call someone. Journal. Put on make-up even if you have no place to go. I remember, one day feeling good after taking a shower and getting dressed. I put on some lipstick and perfume and went to go sit in my living room and watched a show. Yeah, I wasn’t ready to go out, but I felt good.

Maintain a clean living space. Wash a couple of dishes or put dishes away. I hate washing dishes, so I don’t mind spending money on paper plates. In the trash they go. No mess to clean.

Wash a load of clothes (I remember throwing in 3 pants, 3 shirts, 3 pairs of underwear in the wash to have for the next 3 days). Clean one area a day.

Monday-kitchen
Tuesday-living-room
Wednesday-bathroom
Thursday-Wash/put clothes away
Friday-sweep, mop, vacuum and trash.

When my area around me is clean and neat I feel better. I actually sleep better too.

Get out of the house. Get the mail from the mailbox. Walk down to the corner of your street or around your apartment building. Go with a family member or friend to store (if too much to be around so many people then stay in the car, but get out of the house.) Visit a friend or family member. Invite someone over and visit with them on the porch. Better yet meet them at your local library, park or go out for lunch or coffee. Attend a Support Group. Shop for your groceries. No online ordering. If you must opt for store pick-up and/or curb-side. The point is to get out of the house.

"There is help. You are not alone. Reach out. You matter. Believe you are worthy."

Volunteer. This works so well because the place and hours you donate can be set up to work with you and your needs. If you are not sure where to volunteer try and remember what brings you joy, what your passion is, what skills you have and go from there. Some places are on-going volunteer positions, some have time limit commitment. Some organizations/agencies have a one day commitment or a 2-6 hours one time event commitment. There are a multitude of volunteer opportunities to suit everybody. You just need to figure out how you would like to give back. When I was sharing and educating my community (volunteering) about mental health I started finding myself. Volunteering helped with reducing my anxiety episodes. I didn’t need to take so many PRN meds because I was feeling good about the work I was doing.

"Fourth day (in bed) flies by without a thought and before I know it it’s five years and I am still under the covers."

Educate yourself. Do you know what your diagnosis is? Do you understand the diagnosis? Learn about your diagnosis, your warning signs, what your triggers are, the benefits and risks of medications you are taking or will take. Ask your doctor (Psychiatrist, PCP, Nurse Practitioner) questions. What should you do if you experience side effects from the medications prescribed to you? When should you start noticing an improvement after starting medication? How much medication can I take to help alleviate some symptoms? If I notice I am relapsing what should I do? Learn about speaking up and how to advocate for yourself. Take a class like NAMI’s Peer-to-Peer or Mental Health First Aid. Join a Wellness group on-line or Face-to-Face. Check out books related to your Disorder. Educate and encourage your family and friends to learn about your mental health diagnosis and how they can help to support you. Who is in your support circle? Attend a Conference. Take a family member or friend with you. I have learned a lot about different treatments, coping skills and wellness programs from attending various conferences.

Live, don’t just exist. Having a mental health diagnosis doesn’t mean that life is over. Living with a diagnosis is (or can be) challenging, but you can have a full life; complete with career, family, home or whatever you want to do. There are accommodations at colleges and universities to help in any area. There are also on-line classes. Accommodations are available at work, too, if you choose to disclose to your employer about your diagnosis. You can have an assessment done to check where your strengths are and help in added training or support. Go to the SA Clubhouse to socialize and form friendships while you use your skills to help run the Clubhouse. Attend church, learn a new hobby, language or teach a class if you have a skill. Have fun. Eat Well. Sleep Well. Having a mental health diagnosis is only one aspect of my life. I am a mother, sister, grandmother, volunteer, crocheter, dancer and a voter, just to name a few. I used all my energy and efforts into focusing on my life rather then my illness.

"You see, if I am out line-dancing it means I am not at home in bed isolating myself and letting those dark thoughts take root. If I am out facilitating a class and helping to educate someone it means that I am not in the hospital."

Something that happens to me when the depression gets really bad is that I stop doing the things in my life that keep me from isolating and the things that bring me joy. I stop doing them because my disorder convinces me that the anxiety and panic attacks are going to get worse. In truth, those things that I stop doing are the same things I need to do more of to keep me well. For me working on getting out of bed and taking a shower every day is huge. Because the first day I stay in bed and don’t shower makes it easier for me to stay in bed the next day. Then, on the third day it is so much easier to stay in bed because I have done it two days in a row. Fourth day flies by without a thought and before I know it it’s five years and I am still under the covers. Those small steps I suggested, for me, aren’t so small. They are crucial for my wellness. You see, if I am out line-dancing it means I am not at home in bed isolating myself and letting those dark thoughts take root. If I am out facilitating a class and helping to educate someone it means that I am not in the hospital. But, relapse, crisis, hospital stays, medication adjustments, therapy are still a part of my life still to this day. It happens. When it does, I just start back on my journey either wherever I left off or I start from the beginning again. Yes, again. Depending on what I experienced depends on where I am in my wellness, I pick up at that point. Some of the things I do are easy, others are challenging.

But remember: There is help. You are not alone. Reach out. You matter. Believe you are worthy.

Remember small steps. Recovery/Wellness is not a marathon. Life isn't meant to be Easy it is meant to be lived fully, free and NOW!

By Michelle Mata, Guest: The Journey to Recovery

"Recovery is not the absence of symptoms it’s living life in spite of having a diagnosis."

"There is help. You are not alone. Reach out. You matter. Believe you are worthy."

"Fourth day (in bed) flies by without a thought and before I know it it’s five years and I am still under the covers."

"You see, if I am out line-dancing it means I am not at home in bed isolating myself and letting those dark thoughts take root. If I am out facilitating a class and helping to educate someone it means that I am not in the hospital."

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