Anne

@anne-steinhoff | contributor
Anne worked in higher education supporting research proposals before becoming a trainee to undertake her own research. She studies how performance measures at work influence employees living with Coeliac disease.
Community Voices

Why I feel not lucky to work from home with chronic illness

Since the middle of March, I have not been able to access the building I work in. Instead and like so many others, I started to complete all my work from home. For the first weeks it felt like a dream come true. Before the pandemic started, I regularly had to compromise: looking after my symptoms or pushing through the pain to meet work commitments? When the pandemic hit, I was able to strike a balance between the two overnight. Many people I have spoken to over the past weeks said that I was lucky to still work from home with a high chance of not returning to the office on a full-time basis for months to come. I do not feel lucky at all!

You may wonder why? Or maybe you have experienced a similar dilemma and agree with my statement? Let me explain. I worked in Finance at two different Universities in the United Kingdom before starting my role as a researcher last year. Nobody had thought of a pandemic in those years and I was regularly fighting with my workplaces to work from home. My first workplace tried to make things easier for me after seeing how hard I worked and in what medical state I would get into the office in the mornings. Usually, they would try to send me home to take a day of sick leave. I would protest and would tell them that I could not take sick leave several times a month. I would also argue that my brain was functioning and was up to the job. The truth is I would already be mentally and physically exhausted after the commute and knew that I could not do the same journey back again so soon. I found comfort in the fact that the office had plenty of bathrooms in the case I needed it urgently. And there were many instances where indeed I needed it urgently. After a few months, HR recognised the benefit for me to work from home ones or twice a week. Here is the thing, many people think that working from home means not completing any work at all. Organisations want to ensure they are only allowing their hard-working employees to work remotely.

To this day I have not understood this logic. In my job someone would figure out within a day if I was home without doing work. Despite this fact and after a job change, my employer was not happy for me to work remotely at all. After more than a year we settled on regularly scheduled unpaid leave. The pandemic has changed all this. My new employee has no problem for me to work from home although there is still a big question mark what happens once students return to campus and I am expected to pick up my teaching responsibilities. But at the moment, it is the complete opposite; I can work from home five days a week- no questions asked! Many friends and colleagues say I am lucky but this is not what I was fighting for. There is no need for a universal 5 day, 220 days a year remotely working policy. As many of us with #ChronicIllness, I try to balance full time work commitments and the demands of a body that has more limits than the healthy population. The flexibility to work from home now and then gives me the peace that I can still be productive if my body cannot cope. Being forced to spend my full-time job in my kitchen each day, every day is as exclusionary as demanding me to come into the office every day. I am wondering how to tackle this new ground but I am definitely up for the challenge.

3 people are talking about this
Anne

What Chronic Illness Taught Me About the Idea of Hard Work

Our vocabulary is filled with words such as “productivity,” “hard work” and “perfectionism,” but what happens when our bodies are unable to keep up? I am a perfectionist. I know being a perfectionist is slowing me down at work and at home. When I started university at the age of 19, my lecturers tried to change my attitude; they told me it was not about perfectionism but about hard work. I stopped microscopically examining each step of my assignments at uni and tasks in my internship. Instead, I spent nights finishing my assignments and put in long unpaid hours at my internship. My friends and I were competing against each other to reach the most hours spent at night writing essays, and I was proud that I spent as much time at work as my colleagues. The company that recruited me as an intern was responsible for the planning and execution of a major event each year. Once we got onsite a few weeks before the event, everyone spent the evenings working and I did not question the expectation to sit at a desk until 9 or 10 p.m. I got good grades at uni and positive feedback at work, so I was convinced productivity was based on the hours spent on tasks, and that one could only be successful when spending an extraordinary amount of time at work. Then I got sick and my idea of achieving success through hard work scattered. Putting in long nights to finish assignments at university was not an option any longer as I spent most of my days and nights in bed. I was lucky to be able to change my timetable and to live close enough to campus to go back home and rest in between lectures. Once I graduated, I was allowed to start my days later at work to give my body time to get me out of the house. I have never put in overtime unless I have no alternative, and I enjoy those days when my brain seems to be on track to get work done. I am fortunate enough to have seen positive changes in my body’s abilities since my diagnosis. But the last six years have shown me that our perception of production and hard work is wrong. I believe we should be valued regardless of our level of productiveness, and we should be taught that long hours and persistence do not equate to success. Now instead of pushing myself beyond the breaking point, I focus on my level of emotional resilience each day and how good I am at blocking out time for certain tasks at work. I use timesheets and a notebook to keep track of my progress. At the end of the day, I am still a little perfectionist — but I know my body’s limits.

Anne

When People Say You're in Control of Your Life With Illness

How often have you heard someone say “you are in control of your life” or “you disease doesn’t control you?” I stopped counting the many times family members, friends, strangers and fellow chronic illness warriors in our community have started conversations with these sentences. I know they want to be helpful and they say this to cheer me up. The truth is, when somebody tells me I’m in control of my life despite my disease, I only hear three little words: You are failing! And my brain goes into a lockdown, emphasizing that if I tried harder my pain would be less painful, if I only tried harder I would have a larger social circle to go out with each weekend and ultimately, if I only tried harder my disease wouldn’t be disrupting my way of life. But this happens all the time – my disease gets in the way of social events, holidays, weekends and work, leading me to the conclusion that I’m failing at controlling it! It becomes a challenge not to get stuck in limbo and finding a way to make the thoughts stop each time I listen to or read advice on how I still control my life. For many of us, the “you are in control” advice is like the light in a dark tunnel motivating us to keep going. Of course, the advice can be used to help us believe we can still do all the things we love despite our chronic diseases and that we are more than just our diseases. I accept this. I am not trying to criticize this way of thinking. This is especially true when it helps to move on with life. For me, the problem is that it isn’t helpful. Two years ago, I went to a one-off counseling session at work. My initial reason for going had nothing to do with the actual conversation we had. It was two years after my diagnoses and I was still not feeling well. My doctors, friends and family members had all been telling me how I was still in control of my life and of feeling healthy again. It sounded as if all our bodies would find a way back to being healthy by default. If somebody had asked me about how I felt in those conversations, I would have said that the advice made me feel laughed at because it only stressed how I was failing or even choosing not to get better – as if anyone would choose to be sick. The counselor’s reaction was different to anything I ever experienced and it took me a while to fully understand this reply. It even took a few years to fully integrate it into my life. I want to share the counselor’s answer in the hopes it is useful to anyone who is struggling with the “being in control” advice. He said: You are a clever woman for getting as far as this in your life. If there were a way to control your disease I have no doubt you would have found it by now. Maybe the problem is that you think all these friends and family members are correct. But what if they are wrong and it’s you who is correct? Then you would be running in the wrong direction, wouldn’t you? I chose to accept that everyone surrounding me had no idea what life was like with my condition and that I am the one who is right. I am not in control but I can still move on and enjoy life the way it is. We want to hear your story. Become a Mighty contributor here. Photo via Alexey_M on Getty Images

Anne

Tips for Boosting Your Mood in Autumn With Celiac Disease

In summer, the sunshine regularly boosts my mood helping me to feel more energized even on those days when my body is in pain. Once October is around the corner, I feel how my body struggles in the cold and I find it difficult to kick the ass of my disease on the bad days. This year, I decided to tackle the problem with the below advice before the days grow shorter and colder: 1. Find a bedtime routine that works for you. Due to the long hours of darkness each day, our levels of melatonin increase, making us crave more sleep. On bad days, my pain is worst in the morning and improves over the day. My bowel hurts, movements are painful and the brain fog gets in the way of thinking. This makes me feelexhausted in the morning but restless at night. Sticking to my bed routine has helped me to get up in the mornings. I know my body requires more rest so I set an alarm each evening at 9 p.m. reminding me to go to bed at 10 p.m. I also stick to the routine over the weekend. I use a blue light filter app when working on my computer in the evening to help me adjust to the time of day. I also invested into a daylight clock. Waking up with a dawn simulator flooding the bedroom with daylight helps me surprisingly well to start the day. 2. Be a morning person. As a student, I preferred to work at night so I would start my essays at midnight and then sleep until midday to go to lectures. When I started working part-time, I had a difficult time adjusting to the “adult life” schedule. For the past months, I tried to become a morning person after reading a research article that had found evidence that light naturally controls our circadian rhythms and resets our body clock. I leave the house half an hour earlier, appreciating the extra daylight. 3. Eat more fruits and vegetables. When days become shorter and the sun is nowhere to be seen, our body reduces its serotonin levels. Serotonin helps us to cope and feel happy. A normal reaction is to crave serotonin-boosting carbs such as rice, potatoes and (celiac safe) pasta. With our bodies trying to trick us into eating more of these foods, it is important to have plenty of fruits and vegetables on display. Orange colored foods, such as easy peelers, sweet potatoes and pumpkins are all great sources of vitamin C and make the house look more colorful. 4. Have a catch-up with friends at home. When I’m in pain I spend a lot of time in bed regardless of the weather, but this time of year, I also prefer to curl up in a blanket, get a cup of tea and spend time in front of the TV. To have company, I ask friends to come over to watch TV shows together or to cook. Alternatively, I give them a call or Skype with them. My friends and family always know how to make me laugh, making me feel better. 5. Engage in activities you enjoy and be kind to yourself. For years I felt too weak to go to the gym and I worried I would burn the few calories I had successfully kept in my digestive system. A friend of mine encouraged me to start yoga and meditation instead. Light yoga exercises helped my body adjust while the meditation app has become my daily companion. Both exercises have allowed my mind to empty itself of any unhelpful and unkind thoughts. I am also back in the gym for exercising classes helping my body and mind to take advantage of the darker and colder days. In the end, there are so many things to enjoy in autumn, including watching my most favorite TV show, getting ready for Halloween and seeing nature turn into a yellow-apricot-orange-colored scenery. We want to hear your story. Become a Mighty contributor here.

Anne

4 Tips to Help Make Life at School Easier If You Have Celiac Disease

Can you believe that the new school season is around the corner? Returning to school after the long summer is always a time of excitement. But when it comes to going back to school with a chronic health condition, this time of the year can also be quite challenging. Although we are all affected differently by our ongoing health conditions, all chronic diseases require coordinated and continued support. Here are four tips I wish I had been given as a teenager to worry less about school. 1. Let teachers know when and why you aren’t fit to attend school. When I was diagnosed with celiac disease at university, my early years at school had already been an emotional roller coaster that hadn’t let to the correct diagnosis. I remember that I spent loads of time at the doctor’s office to figure out what was wrong, or resting at home after days of vomiting and diarrhea. Nobody prefers to stay at home when they could meet their friends at school and participate in school activities, but there are days when our chronic diseases require us to focus on our body instead. On such days, it is important to have a coordinated support system. For younger children it is crucial that parents help to establish such a system during the first weeks at school, focusing on necessary information without invading a child’s privacy. It is OK to keep explanations as short as possible. In the case of celiac disease, stressing the importance of a gluten-free environment, and explaining the reasons behind a potentially lower attendance rate, will help to make teachers understand the situation. 2. Don’t doubt yourself and remember to share your feelings. It can be difficult to focus on homework, exams and friendships when you are feeling unwell. With a hidden disease, I have found it difficult to show teachers and friends how I really feel. As adults, many of us try to hide our symptoms and we pretend everything is fine, making it even more difficult to open up to somebody. Over the years, I have only found one way to solve this dilemma: communication. A lot of times, we don’t know how other people feel or what they think, and we assume their lives are just fine while we are the only one struggling. Yet, this is not true. Talking to a close friend, a teacher or nurse at school can help to regain perspective. Friends are able to cheer us up while teachers will be able to find solutions to help us study more effectively during times our bodies are strong enough, or how to find alternative dates when missing exams. 3. Safe food is the priority. For celiacs, life is built around food. A lot of times, celiac disease is portrayed as a disease that can be managed easily. However, there is more to it than finding safe food that doesn’t include wheat, barley and rye. Firstly, you have to know how to read labels correctly – including hidden ingredients that include gluten. Then you have to learn how to manage cross-contamination in the kitchen and find products in the supermarket that are produced in controlled environments. Once these areas are covered, you realize that you will have to learn how to prepare proper gluten-free meals in your own kitchen and how to eat safely in restaurants. For me, following the gluten-free diet has been a steep learning curve. But when it comes to maneuvering through school, gluten-free food preparation is taken to a whole new level. To reduce the risk of contamination, it is always best to bring food to any occasion. For younger children, it is a good idea to discuss food options with kids first. Opening a lunch box with food that is prepared nicely and tastes delicious helps to overcome the fact that we can’t share the food everyone else is having. Personally, this has been a problem all my life so I have come to the conclusion that it’s worth spending some time on food preparation in the morning to be happy with my food choices during lunch. 4. Develop an illness care plan. We all know life goes all wrong when we least expect it. For younger children it can be helpful to develop an illness plan with the school for those days and weeks when it’s time to focus on the body rather than school. I was lucky enough at university that my professors and degree program mangers cared about my health, so we were able to put mechanisms in place when I missed lectures. My professors would forward presentations to my email address or give me the opportunity to record seminars on the days I had to leave the room frequently to go to the bathroom. At school, teachers will be able to summarize lessons or explain what is required for exams more easily when such plans are in place. Planning what classmates are able to forward homework or who can help to understand exercises will also decrease hectic during the bad days when children should focus on recovery. Life with a chronic disease can be unpredictable. By putting mechanisms in place that support us during the bad days, they will help to stay focused on education, and eventually our dreams, on the days we feel strong enough to pursue them. Happy new school year! We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Halfpoint