I Have a Chronic Illness: Looking ‘Well’ does not Mean I’m ‘Better’
I am having a ‘good’ day today. I have been able to write and edit a few articles, send emails, make a cup of tea, and fill in some forms without experiencing a great deal of pain. In fact, if you didn’t know me, you may assume that this is a typical day for me, and you might not even be aware that I have a chronic illness at all.
Sadly, these good days are not my full story. I have ulcerative colitis, a form of inflammatory bowel disease. My symptoms when flaring include painful cramping in my bowels and stomach, blood and mucus in my stools, going to the toilet multiple times per day, and a feeling of urgency when needing to go to the toilet. Even when I am not in a flare, I can experience fatigue, brain fog, and loose bowel movements; along with general inflammation of other parts of my body. I also have to contend with a range of side effects from all the different types of medication that I take.
Unfortunately sometimes it feels as though people who do not have chronic illnesses or disabilities cannot grasp the concept that these conditions may fluctuate, or that many people with chronic illnesses attempt to conserve their energy in order to feel able to participate in activities later on.
In a recent example of the ignorance of the general public, Danielle Vanier (a fantastic fashion blogger and influencer, @daniellevanier on Instagram) posted a picture of herself on Instagram enjoying a gifted hotel stay in London. In the picture Danielle is sitting on the bed in her hotel room wearing a red underwear set and smiling. A comment underneath this picture reads: ‘I thought you were poorly?’ Infuriating. It just isn’t true that every chronically ill or disabled person must be incapacitated 24/7 in order to be genuinely ‘sick’. This sentiment perpetuates the notion that chronically ill people need to ‘perform’ sickness or disability to others in order to be taken seriously.
Vanier tackled this comment head-on on her Instagram stories, and I commend her for doing so, but it is unfortunate that attitudes such as these still prevail. I do somewhat blame the government and mainstream media for this. Too long we have been bombarded with messages of ‘benefit scroungers’ and people falsely claiming disability benefit, leading to people with genuine health issues being looked at with suspicion.
‘Unwell people are still allowed to do nice things and be unwell’- Danielle Vanier
This quote is so powerful. Chronically ill people so often are made to feel guilty just for enjoying their lives. If we post something on social media which shows us out and about having fun, this is often because we have taken into account how doing that particular activity will affect us, (usually planning meticulously beforehand what we will be able to handle, and in my case how far I will be from a toilet at all times!) and very often we might suffer the next day as a result of doing something enjoyable the day before.
Vanier appears to be doing something pretty low-energy in the picture that she posted (sitting on a bed), but even if she had posted a picture of herself doing a 10k or lifting weights, that should not have mattered. What she does when she is feeling capable should not be fair game to speculate upon.
People with chronic illnesses have them for the long-haul. They might have days that are better than others but that does not mean that they are ‘cured’. Even when chronic conditions like ulcerative colitis are in remission, there can still be other symptoms that people have to deal with. It feels as though people with chronic illnesses and disabilities constantly need to put on a performance for able-bodied people in order to seem ‘sick enough’. We are so tired of it.
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Written by Hannah Vooght
