How to settle into a job when living with Coeliac Disease?

by Anne Steinhoff

University can be tricky when living with an autoimmune disease such as Coeliac Disease but starting work after graduation can have its challenges. To make the transition easier, here are a few ideas to deal with some challenges.

I was excited to begin my first job after graduating from University but I was terrified to decline food offers and tell colleagues or my managers about my disease. My friends and close family members tried to comfort me telling me that nobody would ask about food and nobody would notice that I had an autoimmune disease. Let me say this, in my case I was offered food on several occasions, was invited to work lunches and got asked funny questions once I declined the offers. I also felt guilty on those days I did not feel well due to symptoms and I had a feeling that my colleagues judged me in the office for leaving my desk frequently. Have they ever judged me? I do not know but I have been asked about not looking well.

With help, I found a way of navigating my work life. I would like to say that even though these strategies work for me they might not work for everyone. But they might be a starting point to come up with suitable ideas.

I inform my managers about my diagnosis when I start a new role and I have always had understanding managers who took me seriously. It is just a quick conversation letting them know that I still struggle with symptoms despite being on a strict gluten-free diet. The conversation helps me to feel less pressured to function at 100% when I know that there are days when I cannot.

I ignore treats that are left in the office as they are never gluten-free. So far, each office I worked at had a culture of bringing sweets for birthdays, when returning from holidays or before bank holidays. Often colleagues are polite and offer sweets, but I always decline those offers. In my first job, I realised that people do ask questions, make comments or sometimes ask other colleagues behind the actual person’s back about weird habits such as declining sweets all the time. So I decided to tell my colleagues I share desks with or the ones I have conversations with frequently that I live with Coeliac Disease, that I live a strict gluten-free life and that I cannot cheat. Most understand and some are so great that they start bringing gluten-free treats. After a few months, most of my colleagues knew although I had only shared my diagnosis with a few of them. It will depend on the office structure and culture, but the fact is people talk. After being annoyed and terrified, I used it as an advantage. I agree that it can be difficult at some workplaces and unfortunately, some workplaces are not that open. Maybe there is not even a need to tell anyone or it is easier not to share this piece of very private information. The only thing that is important when starting the first or new job is: to find a way to feel comfortable. Work is stressful and busy enough, worrying about Coeliac Disease should not be part of it.

Coeliac Disease and the never-ending story of navigating social gatherings

by Anne Steinhoff

Coeliac Disease can be a real troublemaker when it comes to going out with friends, spending time with family or attending social events with co-workers. After putting a lot of pressure on myself for years, I learnt that it is okay to struggle in these situations. The new perspective helped me to find a way to enjoy these moments again.

When I was first diagnosed with Coeliac Disease at the age of 21, I did not realise how many social gatherings involve food and how isolating it can be to follow a strict gluten-free diet. I turned to online resources that made it sound simple to be around people and food. Those websites left me irritated and confused as I did not feel comfortable in those situations and I questioned whether I was making it too complicated for myself. Having lived with Coeliac Disease for several years now, I found my way of dealing with social gatherings. Here are 5 tips I am trying to follow:

  1. Focus on a positive reason for showing up. If there is a family or work-related event and it is obvious that the store-bought cake or prepared barbeque will not be gluten-free, there will be another positive reason for going such as spending time with a cousin who is not around often.
  2. Teach yourself to say ‘no’. It is easier said than done to decline food or drink offers particularly if it is in a family or work environment. I don’t drink alcohol and eat very healthily because of my Coeliac Disease. People often roll their eyes when I refuse food, but I tell myself that I do not owe them an explanation. This is also true when declining an invitation or leaving early. If there is no good reason for showing up and it is not a mandatory event, it is okay to say no to the host.
  3. I think learning to say ‘no’ is deeply connected to this piece of advice: be confident! When people realise that the person in front of them comes across as knowledgeable, they ask fewer questions and are more likely to accept the received response. Living a strictly gluten-free life is not a choice, but a medical necessity and it is okay to tell them.
  4. Bring your own food. It took me some time to think positively about meal planning and preparation. My skills have improved so much that I get compliments for the food I bring sometimes. If you are fortunate enough to have a body that digests fish and chips or gluten-free burgers, I would suggest stopping at your trusted pub or restaurant and bringing it along.
  5. Try to be the organiser of the event to be able to choose the restaurant, coffee shop or host everyone at your place. I still struggle with this piece of advice myself and therefore, I put this at the bottom of my list. I think it comes down to confidence and the group of people. Friends and close relatives will be more likely to agree to a venue switch than co-workers. But some events just can’t be moved to a different place. In those cases, I bring my food, eat in advance or I leave early to eat at home.

If you feel like me and the general advice out there is not that helpful, I hope my story will show that it is okay to struggle with social gatherings.

What is life with Coeliac Disease like?

by Anne Steinhoff

Like many autoimmune disorders and chronic illnesses in general, Coeliac Disease comes in many forms and shapes. Having struggled to find those living with the disease who are physically or emotionally challenged by it every day, I like to stress we exist!

When I have a conversation about Coeliac Disease it often goes like this:

Person: So you do not eat anything from the buffet/ the kitchen etc.?

Me: No, I have a chronic illness and I am on a medical diet. (I try to avoid speaking about Coeliac Disease > in small talk conversations as I feel that I educate around 85% of those around me about what Coeliac Disease really is and small talk is not the place to do that.)

If the person pushes me to tell them the name of my disease and I am up for it I say: I have Coeliac Disease with severe symptoms. After that part, the conversation can go many ways. Some people just leave it there, others tell me that it ‘sucks’, some understand but the majority says something like: is that not ‘just’ a gluten intolerance?

It is not just about the protein gluten.

Of course, people with Coeliac Disease cannot digest gluten and that is a big part of the disease. But that is not everything. It is also extremely limiting for those of us who have biopsies that come back with the worst or second worst criteria. When facing malabsorption, being underweight and keeping any food insight the stomach for years takes its toll on the body. And being reminded of the fact that everything is fine as long as gluten is cut out of the diet does not touch this side of the story at all.

There are those with Coeliac Disease who magically feel better after their diagnosis, those who are asymptomatic and those who say they can manage their symptoms easily. I think it goes without saying that I am glad that not everyone has to suffer painfully through this disease and I wish I had a similar experience. I also recognise that the voices of those with these experiences are equally important. But I am trying to highlight that life with the misconceptions around Coeliac Disease is already hard on everyone but by only focusing on the easy or success stories, we silence a group of people who live a different life with Coeliac Disease. Even worse we open the door that they question their sanity. To change the societal understanding of Coeliac Disease, all experiences of the disease matter.

Undertaking a business PhD in Coeliac Disease

by Anne Steinhoff

Or: can you do research in Business and Politics looking at your own disease?

After completing my master’s degree, I thought about the possibility to remain in higher education to qualify as a PhD researcher myself but decided against it. It sounded exhausting to deal with a research project and my Coeliac Disease. Until one day, when I realised that I could research life at work with Coeliac Disease.

I am interested in understanding what the experiences of employees are when working and living with Coeliac Disease. I want to show that there is diverse experience with this autoimmune disease which is not widely recognised in society including our work colleagues, line managers and the power holders who decide on how wellbeing is managed at work.

My interest grew into a serious project plan after speaking to two colleagues who live with Coeliac Disease. I was very much fascinated by the story of one of them as the disease did not seem to impact him much. He explained that being offered food was the biggest issue as he felt rude to decline those offers from co-workers which affected his work relationships. The other person had a different experience. She told me that the symptoms of the disease put her in pain. Being required to work in a uniform at work, she said that she often imagined how it would be like to work in a place with a more relaxed dress code. By listening to these two stories, I had already collected three different experiences about the same disease. That, to me, showed the value to speak to individuals about their experiences.

Undeniably, there have been many changes to national and local health and work-related policies over the years. But invisible illnesses such as Coeliac Disease are not well recognised in these frameworks. By proving research on the experience of life with Coeliac Disease, I want to show that there is a lot more to do to reach health justice in the workplace.

Welcome to my blog

by Anne Steinhoff

Hello. I am Anne Steinhoff. Welcome to my blog.

I used to work in Accounting and Finance. Now I teach Accounting to University students and research stories about work-life with chronic illness.

When people hear about illness, they expect that life changes overnight and that you get better again or that the illness is terminal. The thing with chronic illness is that it rarely follows any logic.

In my case, my body changed slowly and I lost everyday freedoms over years. One day, I woke up and the changes had added up to the feeling of being imprisoned in a body that did not know how to function any longer.

I got diagnosed with Coeliac Disease at hospital months later but the initial cure I was promised through a gluten-free diet has not been my reality. Instead, I worked hard, got organised and learnt to accept my body’s limits. No person experiences the same journey with illness, and Coeliac Disease is no different.

Through this blog, I share my and other people’s personal journeys with Coeliac Disease. This includes personal lessons that are learnt but also the experiences we make in professional work life. But foremost, it is a resource to demonstrate that life and work with Coeliac Disease are possible! In the end, every story is an experience to learn from.