A lot of chronic illnesses come with fatigue and other symptoms that impact your energy. Some of them even have exercise intolerance as a symptom. In these illnesses, exercising causes symptoms and might even be dangerous. I have been diagnosed with ME/CFS, an illness that is characterized by what is called Post-Exertional Malaise or PEM. … More How I exercise with an energy-limiting chronic illness
This year I learned that July is Disability Pride Month. Although I have identified as disabled for a while now, I had never heard of Disability Pride Month before. And to be honest, the concept of being proud of your disability sounds a little weird at first. Disability acceptance: sure, that makes sense. But being … More Disability Pride Month: what does it mean to be proud to be disabled?
One of the most popular ways to explain limited energy in chronic illness and disability is the spoon theory. It is an analogy developed by Christine Miserandino back in 2003. She describes sitting in a restaurant with a friend, who asks her what it is like to have a chronic illness (in her case, Lupus). … More Why I relate to spoon theory (despite its problems)
Last month I had an appointment at a rheumatologist to get evaluated for Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD). If you follow me on Twitter, you already know this did not go so well. I already knew I didn’t fit the hEDS criteria, as they’ve been made really strict in order to … More Not feeling sick enough: Impostor Syndrome in chronic illness
When chronically ill people tell others that we have a chronic illness, we often get a lot of the same kind of replies. Often the people saying these things might have good intentions, but these replies can be annoying or even harmful. So in this post, I cover some of the replies chronically ill people … More Things you shouldn’t say to people with a chronic illness
I had never heard of lipedema until my mom was diagnosed with it around 17 years ago. This is the case for many people: they haven’t heard of it unless they know someone who has been diagnosed with it or are diagnosed with it themselves. And yet, it is incredibly common! Since June is Lipedema … More Lipedema Awareness Month: what is lipedema?
Before I started following disabled people and disability activists on Twitter, I did not know that a lot of chronically ill people also identified as disabled. I thought of the chronically ill population and the disabled population mostly as two separate groups that only sometimes overlapped. I personally associated disability with having to use (mobility) … More Does my chronic illness make me disabled?
Brain fog is a symptom of many different illnesses. It can be caused by ME/CFS, the illness I have, but it also happens with illnesses such as MS, POTS, anemia and fibromyalgia. In the latter, it’s even so common that it’s often also called “fibro fog”. Brain fog is called brain fog because, well, it … More 5 types of brain fog you might experience
Throughout last year I’ve regularly been doing yoga through Yoga With Adriene. Adriene is one of the most famous yoga instructors on YouTube, with over 3 million subscribers. And I can certainly understand why. I stumbled across her videos on YouTube when searching for yoga videos, and I liked her a lot. Her motto is … More Trying 30 days of Yoga With Adriene with a chronic illness
My GP is pretty great: she takes me seriously, takes ME/CFS seriously and admits that simply because we don’t know what causes it yet, doesn’t mean it’s psychosomatic. However, there is something about her that annoys me a bit: she seems to think I shouldn’t focus too much on my illness or it will get … More Having a chronic illness vs. being chronically ill