The hidden side of shielding: Young people in lockdown

~ hannahleighibd ~ 1 Comment

The Coronavirus pandemic has caused upheaval and apprehension for everyone. But for some young people like me, there has been added stress and worry due to being classed as clinically vulnerable.

Immunocompromised people have weaker immune systems which could be as a result of illness or taking medication. In my case it is caused by medication that I take to control a form of inflammatory bowel disease (IBD) called ulcerative colitis which is an auto-immune disease. People who suffer from auto-immune diseases have an abnormal immune response, which means that their body mistakenly attacks healthy cells as it should attack against bacteria or viruses.

In April 2020 the NHS advised ‘high-risk’ people to shield for a minimum of 12 weeks. Many young people in this category feel that they have been overlooked. This is especially true for those who appear to be able-bodied and have ‘invisible illnesses’ that are not obvious from the outside.

I talked to some other young people about their experiences of shielding; how it affected their mental health and what they did to alleviate their worries and anxieties, as well as their thoughts and fears going forward as the country starts to ease lockdown.

The effects of shielding on mental health

Nel, 23, who has severe asthma and generalised anxiety disorder (GAD), said that her mental health suffered as a result of the pandemic and that it was easy to ‘get engulfed by the constant stream of terrifying and depressing news’. The unavoidable news stories about deaths from Covid and its potential long term effects ended up frightening Nel and increasing her anxiety, leading her to decide to take a break from reading the news altogether.

Nel also felt that the public health messaging at the beginning of the pandemic, which focused upon herd immunity, was reckless and frightening for her as a high-risk person.

Nina, 36, takes immunosuppressant medication to stop her body rejecting her kidney transplant. Nina lives alone in a block of flats without an outdoor space, so lockdown was especially isolating for her in the first few weeks before the support bubbles were introduced. Nina had socially distanced meet-ups and video chats with her partner, but being physically apart was difficult. Nina and her partner decided to form a support bubble before the government advice was introduced, and luckily for Nina her partner is self-employed, so they were able to isolate for 14 days before going to meet with her.

Lottie, 34, lives with a chronic lung condition called Cystic Fibrosis (CF) and has a 44% lung function; she knew early on that she would be classed as vulnerable and be expected to shield. Lottie said that lockdown didn’t affect her mental health as badly as she had first anticipated, however her physical health did suffer.

Having to isolate meant that Lottie could not go outside to walk for daily exercise, which would have usually helped to keep her lung function stable. By week three of lockdown, Lottie’s lung function had dropped to only 38%. After a discussion with her clinical team, Lottie was advised to continue exercising outside every day, despite this technically being against government guidelines for people with her medical condition.

One thought that did play on Lottie’s mind was something that she discovered through her own research, which was that the NHS has a scoring system for the use of ventilators. This meant that if Lottie did contract Covid and there were a shortage of ventilators, she probably ‘wouldn’t have made the cut’. Lottie said that this was a sobering reality and very hard for her to forget.

Photo by Noelle Otto on Pexels.com

Artie, 25, who takes immunosuppressant medication for Crohn’s disease and Takayasu’s arteritis, said their mental health suffered as a result of lockdown. They said that they had been struggling with their MH before as a result of coping with their poor physical health, and dealing with the isolation caused by lockdown was ‘a lot to handle all at once’. During lockdown Artie started with a therapist through a local low-cost counselling service via video chat. Artie found this service useful and will continue with it in future. Interestingly, having to do therapy at a distance was a positive for Artie: ‘The actual act of therapy isn’t the issue for me; it’s often the travel and getting there on time that gives me a lot of anxiety’.

Conversely, Nel found that although her online counselling during lockdown was useful, she felt restricted by it as she often worried that her housemates could hear her sessions through the walls, causing her to be less open than she might have been had the sessions been face to face.

Jess, 28, has pulmonary hypertension which is a serious condition that causes progressive damage to the heart and lungs due to high pressure in the pulmonary arteries. Jess says that having to shield made her feel like she lost her identity. Jess said that she felt as though she had gone from being a normal 28 year old, to being ‘lumped into a category with [her] grandparents’. Jess says that it was difficult to deal with people who didn’t understand her condition and thought that she was being ‘overdramatic’. She and her husband (who shielded alongside her), spent almost 100 days isolating in their one bedroom flat with little other human interaction. Lockdown was a mixture of highs and lows for Jess: ‘I would spend whole days crying, then the next few days I’d be back on track’.

How shielders got through lockdown

It seems that for the majority of shielders, it wasn’t all doom and gloom in lockdown despite there being some dark days. Most of the people that I talked to managed to use the time to improve themselves by taking on new hobbies and projects, or made the most of the time they had to do the things they enjoy.

Artie tried to make their enforced isolation into a positive by doing tasks that they usually wouldn’t have had time for otherwise: ‘engaging in exercise, having a clear out, tackling things we maybe don’t always get to because it’s a big annoying job. I think a mixture of everything helped a lot.’ Artie also read a lot of books (35 this year!) and binged on Netflix.

Nel says that she found comfort in getting into gardening during lockdown and buying lots of plants for her flat’s courtyard: ‘Being able to nurture plants and watching them grow was actually really satisfying’ Nel remarked. She also said that she felt privileged to live so close to the seafront, and found that the occasional walk and seeing the sunset was great for improving her mental health.

Lottie explained that she is a long-time advocate of meditation, but that she didn’t particularly use it as a tool to help her cope during lockdown. ‘If I was having a bad day, I found getting on my exercise bike or calling someone to be the most helpful.’ Lottie says that at times it was good to just give herself a break and accept that things were hard and overwhelming. Lottie used lockdown to try out a whole host of different activities such as playing the ukulele, making her own lip balms and glosses, learning Spanish, and quilt making. Like Artie, Lottie found that she read more books than ever ‘That was a real form of escapism for me and continues to be’.

Photo by Thought Catalog on Pexels.com

Jess said that she also did a variety of different activities during lockdown, such as playing the keyboard, painting, learning a language and even starting a midsize fashion account on Instagram. Jess has vowed to keep up with most of her hobbies going forward, as she loves the escapism that they bring her.  

Nina works as a hypnotherapist, and she used her skills to do some self-hypnosis in order to release stress. Like Nel, Nina found it useful to take a break from the news in order to reduce her anxiety.

What should everybody know about those classed as clinically vulnerable?

It appears that there is a lack of understanding that people with chronic illnesses are navigating all the same things as ‘healthy’ people, alongside having to deal with a severe health condition. Lottie remarked that there seems to be a presumption that all those shielding are elderly, retired, or not at work.

The majority of the people I talked to also wanted to remind anyone who has a friend or family member who is or was shielding, to continue to check in on them. As Lottie put it: ‘I appreciated so much the friends that took the time[…]and who sent little notes or presents to brighten the long days. A lot of people I know didn’t, and I know this was not a reflection of them not caring but rather presuming like every day I was just getting on with it’. Nel also said that a big part of getting through lockdown for her was receiving care packages from the friends and family that she couldn’t be with. Nel also sent back packages to her loved ones, and said that this was a wonderful way to stay connected with them.

Photo by Pixabay on Pexels.com

Artie said that they took people disregarding government guidelines very personally, and that the public should be more aware of why the guidelines are in place: ‘The blatant disregard and lack of care for disabled and chronically ill people is appalling. I don’t know how people just don’t care about other people’. Nina says that she wishes the general public would not overlook people with disabilities and long-term conditions: ‘[It] doesn’t mean that we are unhealthy and on our deathbed. I was very shocked at the attitude of some that high-risk people were expendable because we are “old and sick”. I could die soon if I catch Covid but I am still an active and productive member of society with many years left to live. I thought it was very ageist and ableist.’

What now for ‘high-risk’ people?

The government now advises that vulnerable people no longer have to shield.  However, as we know, a worrying spike in Coronavirus cases at the beginning of September led to the government banning social gatherings above 6 in England from September 14th. 

Lottie says that she feels very lucky to have an understanding employer who has eased her worries about returning to work. ‘I’ve had a very rigorous risk assessment and told them my expectations if I were to return to the office. A very robust plan is in place… I’m actually looking forward to it.’

Artie says that they feel comfortable going into shops if they have plenty of space and look uncrowded, but that it will be some time before they feel comfortable going to restaurants. Lottie says that she has visited restaurants, but only ones that she was confident had properly distanced tables, disposable menus, and staff wearing masks.

Nina explained that she is not confident that her workplace is entirely ‘Covid-safe’. Nina says that she does not have a choice about going back to work as her employer will not continue to pay her if she continues to shield as it is not part of the government advice going forward. Nina feels that her employer should have undertaken a better risk-assessment, and that the government advice to end shielding has been used as leverage to manipulate her into coming back to work, despite her not feeling fully confident to do so.

The people I talked to (as well as myself) have begun to make their minds up about what they deem safe to do. Still, essentially this does mean that vulnerable people have been left to decide for themselves what level of risk they consider acceptable. The government advice has not been incredibly specific beyond telling us that we do not have to shield, but that we should ‘remain cautious’. I have found that connecting with other vulnerable people and discussing how to go about our daily lives safely has been more useful than any advice the government has given!

Special thanks to Artie Carden (instagram.com/artiecarden) for sharing their experiences and being a willing interviewee for this piece! Artie also has a blog which you can check out here: https://artiecarden.com, and a YouTube channel youtube.com/c/artiecarden. I love Artie’s posts about the books they have been reading in lockdown, there are so many great recommendations!

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

False Starts. New Beginnings.

~ hannahleighibd ~ 2 Comments

Hello, and thanks for taking the time out of your day to read my blog about living with inflammatory bowel disease! You may have Crohn’s or Ulcerative Colitis, know someone with one of these conditions, or are just curious to learn, but for whatever reason you are here I appreciate you and I hope that you can learn something or feel solidarity with my experiences of having Ulcerative Colitis.

I umm-ed and ahh-ed about deleting my very first blog post from just over a year ago, but I decided against it for a couple of reasons. Reason number 1: having a year’s break from one blog post to the next is a rather good reflection of the unpredictable nature of living with a chronic illness such as inflammatory bowel disease. Reason 2: the nature of the post in question was about learning to code. Last year, after being let go from my job in the probationary period, I was under the impression that I could learn how to code and that would be the answer to all my employment-based issues; basically I was scrambling for ideas for work that I could do flexibly around my health issues. I was tired of one false start after another career-wise, and was seeking out something that I could do on my own terms. Please leave a comment below this post if you’d like to hear more about my employment woes as a person with a chronic condition!

So, I’ve had a rough year and a half on the Colitis front, with three hospital admissions since May 2019. In September 2019, I began taking azathioprine, which is an immunosuppressant. For those unfamiliar with them, immunosuppressants do what they say on the tin; they suppress the immune system to stop the body attacking itself as if it were a pathogen. UC and Crohn’s disease are auto-immune diseases; this means that the body has an abnormal immune response, mistakenly attacking healthy cells as it should attack against bacteria or viruses.

If I am going to write a blog about Ulcerative Colitis and chronic illness, I should probably explain exactly what it is. Ulcerative Colitis (UC for short) is a condition that affects around 146,000 people in the UK according to the official NHS website. Despite the moderately high number of people with the disease, I often encounter people that have never heard of it or its ‘sister’ Crohn’s disease; another form of IBD (Inflammatory bowel disease). My symptoms when flaring include painful cramping in my bowels and stomach, blood and mucus in my stools (glamorous!), going to the toilet five times or more in a day (often much more), and a feeling of urgency when needing to go to the toilet. Even when I am not in a flare, I experience fatigue and loose bowel movements; along with general inflammation of other parts of my body (my eyes often have some swelling first thing in the morning). On top of the UC itself, I have to deal with the side effects of some of the medication that I take as well, I could dedicate a whole blog post to my experiences with the steroid prednisolone, and I probably will at some point.

IBD is a chronic condition, chronic in this instance means that the condition is long-term in its effects (over three months). Frequently chronic conditions do not have a cure, but they are able to be treated and managed.

As a side note, often people are very familiar with IBS (irritable bowel syndrome), a more common condition that shares many of the same symptoms as IBD, but which requires vastly different treatment, and can frequently be eased by changes in diet. Diet is often a contentious issue in the IBD research arena, and I won’t delve in to that too much here (I’m not a doctor or researcher), but diet and IBD from my perspective could be a potential future blog post (please comment if you’d like me to tackle that at some point). Essentially, as far as I am aware, there is no silver bullet diet-wise to ease the symptoms of Ulcerative Colitis at least, but there has been some promising research into diet and Crohn’s disease, but nothing concrete.

My aim for this blog is to share with you my life and my experiences with inflammatory bowel disease. I hope to create a dialogue with my readers, so comments are encouraged, and I would love to hear about your experiences with IBD and chronic illness in general. I’d also love to hear what you’d like me to write about next, or any direct questions that you’d like me to answer.

All my love, Hannah xx

Console me, I’m learning JavaScript

~ hannahleighibd ~ 2 Comments

Today was my first day learning JavaScript. Right now I am ‘teaching myself’ using the introduction to JavaScript course on codecademy.com. This website gives you free 7 day access to their courses, after that time you can choose to go ‘pro’ if you like it. I will see how I go for a few days before I choose to commit. Please leave a comment if you have had good (or bad) experiences with Codecademy, and also if you know of any good online JavaScript courses or tutorials that are cheap or free.

I have no background in coding and have an okay-ish knowledge of computers, you know, The Web, using a mouse, mices, clicking, double clicking, the computer screen of course, the keyboard, the bit that goes on the floor down there (Thanks Jen ;-)). In all seriousness though, if I can do this then I feel like any person of average intelligence could give it a shot. I will try and explain myself in layman’s terms as much as possible, and will answer any comments or questions if I am able to.

So far, I am finding the Codecademy course fairly straightforward. It is very user-friendly, with text to the left hand side of the screen to read and take in, and questions to answer after each topic. Each question requires you to input some code into the box in the middle, you then click ‘run’ and your answer will be checked to see if the code worked correctly. If you are correct the question will now have a tick at the side, if you are wrong then some writing will pop up in the middle section asking something along the lines of ‘did you remember to include…?’. Also, you can choose to uncover a hint after each question too, this hint essentially paraphrases the information above it, reminding you of the correct way to input some code. Each time I have attempted to answer the question posed without using the hint unless I absolutely need it, but to be honest if you have read and understood the previous information correctly then you shouldn’t really need the hint (unless you have completely zoned out, in which case I would suggest taking a break!). I like the little questions that give you an opportunity to input code yourself, I am definitely a ‘do-er’ when it comes to learning in the sense that I like to just get stuck in and give things a go in order to learn through trial and error. I can read or listen to instructions for a while, but for me things don’t really sink in until I have actually given it a go, so I’d recommend this course if you are also that way inclined.

I will see how I go with this and check back in towards the end of the week to let you know how I am doing, and if I have decided to take the plunge with the ‘pro’ version.

A bit about me…

~ hannahleighibd ~ Leave a comment

So I’ve finally done it. It’s only taken years but I finally started a blog. I suppose it’s taken me this long to realise that some people might be interested in what I have to say (or maybe not?!).

So why have I started to write? Well for one, I feel like writing a blog may be somewhat theraputic. Having a chronic illness for 10 years takes its toll and having somewhere that I can openly vent about it seems like a good idea. I hope that this blog can comfort others, I’m not going to say ‘inspire’ because that is too much pressure and also I don’t feel very inspiring at the moment, I’m just trying to get through life in the most sensible and stress-free way possible.

This was supposed to be an introduction to me but now I have realised that a good blog post would be talking about stress and chronic illness, but let’s put a pin in that for now and wait until my next post for that one.

Ok so, about me. I am 29 years old, and I work in admin part time due to my health condition. I have Ulcerative colitis which was diagnosed 10 years ago. I have periods of being in remission, this was something that I enjoyed for a good few years until around 6-9 months ago when I began to flare again. I have had to re-think my career plans (I graduated with a masters degree in social work last year), and take stock of healthy/unhealthy relationships in my life.

Today I decided that I would learn to code Javascript. I think this will be a good skill to have and is something I could turn to when I need extra income, or need to go freelance full-time as a result of my chronic condition. I am looking forward to sharing my experiences, and hopefully have some fun along the way!