Tag: ulcerative colitis

I have a chronic illness: Looking ‘well’ does not mean I’m ‘better’

~ hannahleighibd ~ 1 Comment

I’m angry today: this was prompted by an ignorant comment on the Instagram of Danielle Vanier (a fantastic fashion blogger and influencer, @daniellevanier on Insta). Recently Danielle posted a picture of herself 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. Does this person believe that every chronically ill or disabled person must be incapacitated 24/7 in order to be truly ‘sick’? It’s just not how most chronic illnesses work and this sentiment perpetuates the notion that we need to ‘perform’ sickness or disability to others in order to be taken seriously.

Danielle has tackled this comment head-on with her recent Instagram stories, and I commend her for doing so, but I am still so irritated 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. Benefit fraud is not as big a problem as the government would have you think, in fact figures from 2013 (https://www.cas.org.uk/features/myth-busting-real-figures-benefit-fraud) showed that benefit fraud represented only 2% of the estimated total annual fraud in the UK (that’s ALL benefit fraud, not just disability benefit), however a whopping 69% is tax fraud, do with that information what you will!

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!) 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 anyone does when they are feeling capable should not be fair game to speculate upon.

I have a chronic illness, it’s long term, I won’t ever ‘get better’ until a cure comes along for colitis. Even when I am in remission, I still have other symptoms relating to UC. How I feel with my condition varies wildly day to day. Also, expending energy on a seemingly good day can make for a bad one the next. 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.

I have a confession

~ hannahleighibd ~ 4 Comments

I am a bit of a hypocrite. I write a blog about chronic illness, but at times I can find it very difficult to engage with other bloggers and people on social media that write about illness, especially others who suffer from inflammatory bowel disease.

Why do I feel this way? Honestly, I find it incredibly difficult not to compare myself to other people who have IBD. I often worry that I’m ‘doing it wrong’, or perhaps not putting in enough effort to be well when I see other people who have IBD thriving and having success in their careers.

I know what it takes for me to feel like I can sit here and write about my experiences, or feel inspired to write a blog post. Surely I should be cognizant enough to realise that behind the scenes of every post that a person with IBD publishes there might be a whole host of issues and worries that they are hiding from the outside world?

The thing is, I know social media is a highlight reel, I’m so aware of it. I have been very successful at certain times in my life, and I suppose I have probably seemed ‘inspirational’ to other people with Ulcerative Colitis. But that hasn’t been my whole story. For every ‘success’ that I have posted on social media, there is another failure or set back that I haven’t written about. I just wish I could do away with the feeling of inferiority when other people with IBD post about their accomplishments.

It is important to remember that people with the same illnesses differ, just like any person is different from another. We are all going at our own pace and that’s ok. We might have higher or lower pain thresholds, mental health issues, other comorbidities, or better or worse financial situations. Some of these things may be known to others, but others might not. I would do well to remind myself of this when on social media!

I’m getting better at trying not to compare myself to others, and I don’t think I’m alone in feeling how I do, but it’s difficult to not feel terribly guilty about it. Comparison really is the thief of joy and I’ve let it hold me back and feel unworthy too many times.

Please leave a comment below, message, or tweet me with your feelings about this. Do you also find it difficult not to compare yourself to others? Or maybe you’ve learned to take social media posts with a pinch of salt? Let’s talk!

Twitter: @hannahleighibd

Instagram: @hanniev123

Love Hannah xx

Compromised

~ hannahleighibd ~ Leave a comment

woman in green and white stripe shirt covering her face with white mask
Photo by Nandhu Kumar on Pexels.com

As a person with a compromised immune system I am/was a part of a group of thousands of people in the UK who were advised to shield from Coronavirus for a minimum of 12 weeks(!) from the beginning of April 2020. When the dreaded NHS text arrived on my phone declaring that I was one of the most vulnerable and high-risk people with regards to catching Covid-19 it was frightening, despite knowing that it was inevitable.

Just to make it clear, not every person who has Ulcerative Colitis or Crohn’s is immunosuppressed/compromised. However, immunosuppressive therapy is often prescribed for patients with auto-immune diseases such as IBD.

I started taking my immunosuppressant medication: Azathioprine in September 2019. I was always made aware that by taking this medication, I would be more susceptible to contagious illnesses. Before the Covid-19 pandemic, my attitude was always that being exposed to the common cold or flu was a fair trade-off for not having a flare. Armed with the flu jab which I get every year, I felt pretty safe. Then Corona came along and changed everything for me and thousands of others with compromised immune systems. To be immunocompromised is to be vulnerable. A quick look for the word ‘compromised’ on thesaurus.com will give you the synonyms weakened, endangered, and jeopardised to name a few; those words are quite scary, right? As far as I am aware, no-one wants to be vulnerable or considered as such.

One of the first messages we heard about the Coronavirus was that young, fit, and healthy individuals were unlikely to be seriously affected by the virus. I believe that this led to a nonchalant attitude towards Covid-19. By communicating this, the underlying message was that it was only the elderly and those with underlying health conditions that needed to be worried about contracting the virus. But what if you are a person with an underlying health condition like me? You might be surprised to find out that according to the U.S. Department of Health and Human Services 50 to 129 million Americans have a pre-existing health condition, and according to The Population Reference Bureau, 16 per cent are over the age of 65 (https://www.sheknows.com/health-and-wellness/articles/2171611/coronavirus-ableism-elderly-sick-chronic-illness/ by Suzy Berkowitz). It is more difficult to find the exact numbers in the UK, but we can make an educated guess that the percentages might be roughly the same. I wonder how many of us there might need to be in order to matter? Elderly people have value. People who have disabilities are valuable. People with invisible illnesses are valuable. I understand that these messages were meant to reassure people and reduce panic about the effects of Covid-19 on young and healthy people; but for people with medical conditions that make them vulnerable to the Coronavirus, it actually makes us more fearful that the general public will engage in behaviours that put themselves and us at risk.

I am vulnerable at the moment. But I am not completely powerless. I have the opportunity right now to let you know how this pandemic affects my life and what you can do to help. If you are reading this now then I am letting you know that you have a responsibility and an opportunity to act in a way that will protect me and others like me. Yes, it might be inconvenient for you, and you might not be able to be ‘free’ in the way that you want to be right now, but I don’t have the option to be free at all. I don’t have the privilege of a body that allows me to be free.

~Be sensible, follow government guidelines, social distance wherever you can and for goodness sake please wear a mask and WASH YOUR HANDS!~

Hannah xx