Self-Advocacy Education for Chronic Conditions
After some very helpful feedback about my video, I realized my message was not coming across how I wanted it to. My intentions are to educate and empower my clients to advocate for themselves. I provide the skills, knowledge and framework for them to confidently do this. While I am an advocate, I teach others to do that on their own for themselves. With A LOT of help from Trevor Croft Media, I am proud to present my new awesome video! Be Well!
I feel like I have been in bed for weeks
I am scared of committing to anything
I feel “lazy” and “helpless”
My favorite place is the movie theater and I escape there multiple times a week
I get another diagnosis and it feels like it is swallowing me
I try desperately to help others because it is too hard to help myself
I am lonely
I lose a friend and feel numb at the funeral
I am terrified to start a new job
I am afraid of being judged- while judging myself
I am anxious
I am exhausted
My room is a mess
I am in SO MUCH physical pain
I am tired of going to the doctor
I only want to see my family and people I really trust
I look forward to bedtime
The grocery store is my enemy
I am scared I will sound crazy
I break promises
I feel ugly
I’m hungry and feel too frustrated and limited by my diet that I give up on making food
All of the things I NEED TO DO get put off or left behind.
This is not the story of someone else
This is Here and Now
This is me
This is Depression
In my life, my greatest stress has been work. It all started in my late teens and early 20s. My parents retired when I was 14. A few years and a lot of medical expenses later, I found out that they had been paying a lot of money for my health insurance. The health insurance I had wasn’t even that good. At this time, it was difficult to get healthcare if you had pre-existing conditions. I felt like the best way to get insurance was to make sure I had a job that offered health insurance with benefits, or continue to be a college student.
When I took a five-year break from college, I had some periods of time being employed with benefits. Unfortunately, I had to rely on my parents for times when I did not. To be honest, the second reason I had for going to college was to get education. The first reason was to make sure I had a degree so it would be easier to get a job with benefits. While this may not have been true, it was what I believed at the time. It was a total bonus that I was able to get student health insurance while I was in school. It was also a total bonus that I received a quality education and now have the joy of using what I learned every day of my life.
It is so sad and stressful for me that I worry about if a job has benefits as much as if the job is a good fit. When I completed graduate school, I had a really difficult time finding a full-time job in my field that provided benefits. Just finding a full time job was a challenge. I did some contract and part-time work for a year before I finally got the right job.
I loved my job. I worked for two years at a community college and was able to make an impact on the lives of my students by using my education, personal experiences, and strengths. I was given a lot of creative freedom to design and assess my programs. I loved the students I worked with and felt confident about my performance.
Just after the two-year mark of being at my job, I started to get sick. A few months later, I found out it was cancer. All this time, I had been concerned about my mental health pre-existing condition. Now I had to deal with the expense of cancer. I am grateful to this day that this diagnosis came at a time when I was covered by really good health insurance. Because of that, the cost of my treatment did not put me in a place where I couldn’t afford it.
Because of the side effects from cancer, I decided to quit my job to focus on getting well. That was in August of 2015. Over two years later, I am still responsible for finding, and paying for health insurance on my own. While I have been working for the last 10 months, it is only part time, so I do not qualify for benefits. There is no way someone with my health can go without health insurance.
I face a fair amount of frustration when it comes to working and having chronic illness. With illness comes fatigue, pain, depression, anxiety, and fear. I have an underlying fear that I will continue to get ill. While that is not likely (from an optimistic stand-point), the fear is still there. With all of this, I have not been able to commit to a full-time job. I have a lot of anxiety being in an office setting because I tend to compare my work with others and I feel like I always have to explain myself – whether I am doing a good job or not. I get tired easily and have pain if I sit too long. I tend to be pretty sensitive and emotional. I always have been, but starting menopause after a total hysterectomy at 32 didn’t exactly help.
In my current job, I do not have a consistent schedule that provides routine and structure. I work in several locations doing different types of jobs that require different types of energy. At least once a week, I am required to put in a 10 or more hour day. I thought I would be able to explain my challenges and advocate for myself better than I am doing. I have worked for years on having routine, making time for exercise, fun, nutrition, complimentary medical services, and rest. I have learned that scheduling and planning really helps to maintain balance.
The foundation and mission of my business is to provide self-advocacy education based on my model. I thought I was doing that in my own life. Now I know why I tell clients that the most important step is to KEEP GOING. I feel like I am being tested. I know I am being misunderstood. I am genuinely at a loss because I have no idea how to continue to advocate for myself in my current situation. I have run out of possible solutions. I have gathered and presented facts, I have asked for help brainstorming. And now, I am not being the best possible me I know how to be.
I feel like I am starting to obsess about how I can make my schedule work for me. I have constant anxiety and continue to think about it even when I am not working. This feels like it is throwing off my balance. Because I am spending time obsessing, I am not making time for exercise, eating more than once or twice a day, or spending the time I need to be calm and alone. When I am am not obsessing, I am spending a lot of energy trying to squeeze in time for projects for my business. This brings me so much joy, but I want to have more time and energy to contribute to it.
I have spent a ton of time writing lately. I made a promise to myself that I would post every Sunday. Last week was the first time since February that I didn’t post. I have been working on my book a lot and giving myself some pretty strict deadlines for that content. My new website was launched this week and I spent time communicating with the wonderful Darice at FullCup to make it the best product possible. Trust me, it is. Check out the masterpiece she created here.
I know there is hope. Life really is a journey. If I got to the destination, the journey would be over. I don’t even know what the “destination” is. I do know that the journey can be devastating, exhausting, frustrating, and expensive. I also know it is fun, exciting, and full of love. While I just wrote about the cost of chronic illness-physically, mentally, emotionally, spiritually, and financially, I am still hopeful. I am still resilient and I am going to follow my own model and KEEP GOING.
Be Well
The best way I get through life is to be prepared. I have a plan in place for times when I need to address my bigger feelings such as sadness, anger, loneliness, hurt, disappointment, fear, nervousness, excitement, love, inspiration, hope, and anticipation. When you read through that list, you may not have been expecting “positive” feelings. In my life, my emotions can be very big and magnified. I have learned to accept this because it is hard to change who I am and I don’t think I necessarily have to.
Because my emotions arrive somewhat like a tidal wave, I have discovered they aren’t going to magically go away and I have to find ways to feel calm and safe when they rush in. Even my excitement and motivation come with a strong force. People who know me have most likely seen the wave pretty quickly. I sometimes feel apologetic. Really, I want to apologize to myself for the discomfort.
Instead of getting into the big cycle of judgement, blame, or embarrassment, I have learned that I have to feel my emotions, AND I have the choice to handle them however I want. The way I do this is to accept my discomfort and use my VERY LONG list of coping skills. Coping skills don’t have to be this big ordeal. They can simply be a distraction. Sometimes, they are very productive. Many times, the first thing I try isn’t the thing that works. At times, I have to try and combine multiple things in hopes for a good outcome.
Those are just a few of my many. I found this list of 99 coping skills if you are interested in creating your own list and need inspiration. These skills are good to have handy in your mind because we all need them at some point or another. There does not even have to be a big event or feeling to use them. For the most part, we are all coping with simply being alive.
Be Well
1500 minutes. 1500 minutes is a pretty conservative number for how many minutes a week I spend feeling anxious. That’s an average of about 4 hours a day. Right now, I am anxious about reporting that and having you judge me. What I’m more anxious about is that I know I am underestimating the amount of time and I don’t want anyone to think I am “crazy”.
I’m anxious about:
Not being on time, driving, meeting new people, giving students the wrong advice about their classes, how I spend my time, hurting people’s feelings, going to the doctor, if I will ever really be able to work for just myself, what people think when I post in this blog, if what I’m eating will make me sick, when I will lose another immediate family member, people not believing me, not being heard, being unsure if I am using the right punctuation or grammar, having to make a decision about what we are going to do or what we are going to eat when I am with friends, if other people are happy, being in a small space with too many people, if I am being judged, most things I say, getting to the airport on time, losing my keys, forgetting things, having a messy room, taking a yoga class and not being able to do the poses right, everything about money, cooking and having it taste bad, text messaging, sending mail and being worried it won’t be received, packing for vacation, picking out produce at the grocery store, taking too much of other people’s time, not having control, trying to make this list and knowing I forgot things.
I’m not exaggerating. I know I left a number of things out. I will probably feel anxious that you will read that list and it will make you anxious. Funny thing is, I am not always even conscious of when I am anxious. Ever since I have been going to my current therapist, I have been more aware of how my body is letting me know when I am getting too anxious. Sometimes, I feel my jaw tighten. If I stop to notice, sometimes I am holding my breath. Sometimes my muscles and joints will hurt too.
The fancy word for obsessively worrying or thinking too much is called ruminating. The things I ruminate about most are the things I have said or done. If a conversation didn’t go the way I meant for it to go, I will think about it for hours, sometimes days. First, the thing I said plays in my mind over and over. Then I think about how the person might have reacted to what I said. Next, I think of how I would explain, clarify, or apologize. This cycle goes around over and over and over. Sometimes, I get stuck in the cycle and can’t be present and mindful. I am too busy thinking about what happened and what will happen in the future as a result of that. Next thing I know, I have wasted valuable time with a friend because I refused to take the time to address my anxiety and use the concepts I have to calm down and slow my mind. By the way, I am sorry if this has happened when I was with you. (I have to apologize because I’m anxious you won’t know that I am aware that this is a problem).
If I have done my job as a writer, I have just brought you to a place where you get a sense of how my anxiety impacts how I experience the world. It is uncomfortable, unreasonable, and totally irritating. (Listening to the audio might REALLY give you a sense.)
I used to think I was just stuck in this place of anxiety. I felt like I was trapped and would not be able to stop worrying. That only made it worse and made my body get to an extremely agitated state. Now I know there are things I can do. At this point, these things only work about 45% of the time. That percentage has slowly increased and will continue to do so the more I practice. The new skills I practice have only really been in my mind and body for about a year. My mind has a tendency to be more urgent and in a hurry while my body knows the work is in slowing down.
I experienced this just yesterday when I was overwhelmed with thinking about some difficulty I am having with some friendships right now. My mind was racing; I was searching for solutions, judging myself, and feeling grief. As hard as it was, I forced myself to move into a less anxious place by breathing, using a practice called tapping, and stopping the outside and inside chatter. I actually felt and saw the difference in my body. I came to a space of more peace and calm. If it was relatively easy to get there in 30 minutes, I cannot figure out why I don’t take the 30-45 minutes to do this more often to greatly decrease the 1500 minutes a week. While that is the logical thing to do, anxiety is illogical and is hard to pair with something so logical.
By giving up my old ways of thinking, I have been open to new things. I have learned that THINKING about my anxiety is completely unreasonable and does not work. My mind is already ridiculous and has no productive space for “thinking about thinking.”
I have learned more about being comfortable with discomfort. Maybe not even comfortable: at least tolerant. I have heard many people with anxiety say it is irritating when others tell them to “just breathe.” To be honest, it does feel irritating. It is a process to get to a place where that makes sense. Something one can say when encountered with another’s anxiety is simply, “I know this is difficult. I am here and will be patient. I am not judging you.” Eventually, we will be able to tell ourselves to “just breathe”.
Be Well
