I’m Here Too – Chronic Illness and Loneliness

12th May 2022 memyselfandchronicillness2 Comments

This week is mental health awareness week (9th -15th May), with this year’s theme focusing on loneliness, and it got me thinking.

Loneliness affects so many people of all ages and backgrounds, and since the start of the pandemic it is no doubt a really prevalent issue in a lot of people’s lives. But what about the loneliness felt by chronically ill/disabled people? For us this goes way back before Covid and is not just built on a physical entity.

Before I go any further and talk about my own experiences, I want to point out there is a big difference between feeling lonely and being alone. Being alone is celebrated by a lot of people (myself included) especially of the introvert type and is a tool used to refuel and recharge – there is nothing wrong with this whatsoever if it makes you happy. Being lonely however is, because this is what affects your mental health often bringing up feelings of isolation and seclusion, and it is this that I am focusing on today.

When I think back to my own experiences of isolation in relation to my chronic illnesses it tends to fall into three categories:

Physical i.e.. not seeing people due to being unwell
Mental i.e. people not understanding how I feel in regards to symptoms
Lifestyle i.e. being different to those around me – work, relationships

If we have said it once we have said it a million times lockdown was a time for ‘healthy’ people to see what it is like from our side of the coin. The results – people struggled with their mental health and needed to get back to ‘normality’ asap. Yet here we are two years later with people still refusing to see lockdown is what the majority of chronically ill disabled people live every single day. With next to no support may I add. Limited to no socialising and little to no opportunities and/or ability to work in the traditional sense. The majority of the days are spent housebound and in some cases bedbound, only being able to see the people we live with if indeed we live with anyone at all. This is the physical loneliness of chronic illness – but what about the mental?

One of the hardest things about living with any form of illness is knowing that most people in your life just don’t get it. They try to be nice, but most of the time it can come across patronising. ‘Can’t you just push on?’ or maybe ‘if you tried a bit harder’ or my personal favourite ‘your ill again? What’s wrong with you now?’ – Oh you know just exactly the same thing that has been wrong for the last eight years!!

It is hard knowing that people don’t get how you feel or understand the daily agony you face. It can make you feel different to those around you and therefore separate from the pack. Ever heard that saying, ‘feeling alone in a crowded room’ – or something along those lines – this is it feels like to be lonely with an illness/condition. You have all these people around you – family, friends, medical professionals and yet the only person living like you is you.

Because whilst people may sympathise with my symptoms, they are not the ones living with the limitations, I am. I am the one who has to see my family members and friends enjoy life and get houses, get married, have amazing careers and babies – all whilst I stay in the same spot. Not one person in my real life can relate and that is a very alienating feeling indeed. Quite frankly I feel left behind. Like I am living under some Harry Potter style invisibility cloak screaming ‘I’m Here Too’ only problem being people cannot only not see me, they cannot hear me either as I am on mute. This is no-one else’s fault of course these are the cards I have been dealt, but I often feel in the shadows whilst those around me are bathing in the sunshine.

Feeling alone in your thoughts can be an extremely dark place. It can cause havoc with your mental health and lead to feelings of anxiety, low mood and/or depression.

(Important Note – if you are struggling with mental health please contact your doctor or one of the amazing mental health charities available).

So, how can we combat these feelings?

One of the best ways of combating these feelings is to reach out to people who are in the same boat and do understand the rollercoaster you are on. This can be through social media, joining groups, reading blogs or contacting charities.

Whilst this may not be able to take away physical remoteness (unless of course you can go to in-person support groups or join zoom groups etc.) this will definitely help with the mental/emotional isolation.

Of course, not everyone thrives on social media and in fact it can make some people feel lonelier especially when you go under the radar and interactions are limited. I often have days like this – convincing myself there must be something wrong with my computer! Nevertheless, even without direct interaction I find reading other peoples thoughts and comments can still help as it makes me feel connected to others in some capacity who have similar experiences.

I guess the point I am trying to make today is you are not alone. I feel it too, as I am sure so many others do, and it is so important to recognise this.

Loneliness in chronic illness is a very real issue – and it is an important topic to talk about not only this mental health awareness week, but beyond.

Do you struggle with the things discussed in this blog post? What helps you?

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · Gaslighting · Invisible Disability · ME/CFS · Tourette Syndrome

Invisible Disabilities – Why Won’t You Believe Me?

21st Oct 2021 memyselfandchronicillness3 Comments

This week is invisible disabilities week (17th -23rd October), so you guessed it – today I am talking about living with invisible disabilities.

Rather than talk about what constitutes as an invisible illness or disability, today I want to share with you a previous experience I had during my time living with invisible disabilities. This example is from many years ago when I was able to work and socialise – this is no longer the case as my conditions have developed since then, and I now have additional diagnoses and symptoms. Please note the disabilities I am referring to are Fibromyalgia, ME and Tourette Syndrome.

I check the clock again, oh crap it is 30 minutes later to the last time I checked – I must have fallen back to sleep – I am exhausted, my body feels like I am lugging another body around as well as my own, maybe another two bodies even. I am so late.

I get to the bus stop and can see there are no available seats in the bus shelter. They have all been taken. My body is struggling today already, I really could do with sitting down, but the seats are taken with people messing around, or on their mobile phones oblivious to the pain I am in. I hover around until I have no option, but to lean against a wall and silently deal with the pain.

Great, there are no seats on the bus apart from the side seats, the ones reserved for the elderly, those with mobility aids or with pushchairs. I hate sitting in them a) because the seats are too hard for my aches and pains and b) I can sense people judge. Today I sit there, I don’t have the energy to stand. I survive about 3 stops and then typical here comes a pushchair – a double buggy at that. I can sense people’s eyes on me and feel obligated to move. I find myself in the aisle of the bus along with other non-seat finders, a few who are noticeably older than me. People offer them seats and they accept. I am the only one left standing, no-body cares.

I’ve finally made it into work and to my desk. I feel relieved to be able to sit down without barriers. Today I have a lot of work to do and a lot of chattering workmates who don’t seem to know what volume control is. The sound is penetrating my ears making it difficult to concentrate, then a young woman in my team decides to spray some deodorant telling everyone she wants to smell nice. The smell invades my nose, eyes and throat, so I cannot breathe properly. When I mention it to my colleague it is brushed off under the carpet like I am exaggerating. The noise of the others is my team is getting louder, I ask my manager if I can move seats to a quieter spot and he looks at me like I am an alien from another planet. He declines instead telling me I need to learn to adapt to the noise levels around like I am making a fuss about nothing.

Photo by Katie Rainbow ud83cudff3ufe0fu200dud83cudf08 on Pexels.com

The day is extremely stressful with deadlines at every corner, I can feel the familiar build up in my chest telling me I need to tic. I am able to control it, but it puts enormous pressure on my body. I confide in my colleague who proceeds to tell me I don’t look like someone with Tourette’s and therefore why do I need to tic. The sad thing is I think she thinks she is giving me a compliment.

My fatigue and exhaustion are in full flow, but I arranged to meet my friend after work for some food. My whole being wants to cancel, but I have done this several times this month already because of my symptoms. She never buys it, she thinks I am lying to get out of seeing her. We meet up at her choice of restaurant – somewhere I have never been before – and notice there isn’t anything on the menu I can eat. She knows this I have told her before and I say it again now. She looks at me like I am lying – ‘what nothing at all? ‘Why don’t you try that or that?’ I tell her I can’t because of my stomach issues, she tells me she knew of somebody else who ‘claimed’ to be like me and actually they could eat these things, they had just convinced themselves they couldn’t. Needless to say, I left the restaurant extremely hungry.

My friend walks with me back to the bus stop, it is incredibly cold out and my circulation is struggling despite the layers and layers of clothing. I mention the pain I am in, and she tells me she has the same problem. What Raynaud’s I ask? No, she replies I just get a bit chilly. She also feels the need to mention I was way too quiet. I tell her my ME makes it hard to function let alone talk especially after being at work. She tells me gets tired, how is my ‘tiredness’ any different to hers.

Finally, I am back on the bus on the way home. I cannot wait to get home and to be able to eat and wrap up and call it a day. My head is banging, my stomach is griping, my pain is at an all time high partly from the cold, partly from the Fibro. My exhaustion is making me dizzy and nauseous, so I sit on the front seat. Other people get on, some are elderly and obviously feel I have stolen their space. I am asked to move, those seats are for the elderly or disabled I am told. I tell them I am disabled, but still move. I am told I am wrong because I don’t look disabled or sick, and that I should think myself lucky I look and am as healthy as I am. I feel embarrassed and fix my gaze outside the window, there’s no point arguing they don’t see it therefore they’re never going to believe it.

I collapse into bed, weak and defeated by the day. The saddest thing is I know it will only all start again tomorrow. The unconscious bias against invisible disability/illnesses. The problem being when people cannot see what is wrong with you or the symptoms you are harbouring, they tend to believe your symptoms are not as bad as you say they are, that you are exaggerating and is some cases may believe you are lying. They may think you are convincing yourself you are worse than you are, or in some scenarios believe it is attention seeking behaviour – all because they can’t see it and if they can’t see it, it can’t be real right?….

I hope this post helps in sharing the reality of invisible conditions, and the constant battle it is. What are your experiences? Are they similar to the ones I have described?

Sarah xx

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Awareness · Mental Health · Tourette Syndrome

The Mental Health Impact of Living With Tourette’s

11th Jun 2021 memyselfandchronicillness3 Comments

Another month and another awareness event – this time we are talking Tourette Syndrome – TS (15th May – 15th June).

For anyone reading this thinking ‘ahh this has no relevance to me, I’ll just skip this post,’ I encourage you to think again. I say this because isn’t this what awareness is all about, learning about conditions which you may not have known about before? I am aware that my Tourette’s posts are the least viewed content on my blog and this makes me sad, because as far as conditions go my Tourette’s is just as relevant as all my other conditions and therefore it is important for me to write about this as much as anything else.

If you are still here then thank you, I appreciate you sticking around and wanting to learn more about my ticking world. Today I wanted to talk to you not about my life with tics (you can read more on this here), but the mental health impact of living with such a condition.

Like with any condition we all deal with it in various ways and TS is no different. Some sufferers use humour, others shy away and some people really find it difficult to accept it into their lives. I am someone who accepts my tics and embrace them as a part of who I am, I can even laugh about it from time to time (with close family), nevertheless I suppress my tics in public due to the negative feedback I have received from others. I have had people laugh, stare, point and be disgusted simply by me mentioning the fact I tic.

Examples of times I have had someone ridicule my TS include:

A former work colleague telling me she was glad I suppressed my tics to save the embarrassment and distraction for everyone else.

A new job revoking my position once they found out I had TS. One minute I was filling out the paperwork being told my hours, the next I was being told the job was no longer available (after he read the ‘any health conditions’ section).

Another example of indirect taunting was after a dating show on television featuring someone with tics had aired. This person showed so much bravery going onto a programme to find love with their tics and yet I had colleagues sat on another desk laughing about it. They didn’t know I was a fellow sufferer, but that wasn’t the point. These people were supposedly educated, clever individuals and yet they were mocking someone from my community for being different.

I would like to say these were the only occasions, but sadly the list goes on…

Looking back I wish I’d had the strength to stand-up in these times of discrimination, but instead I concealed my TS more, bowing down to ableist views on the world. Saying that though should I have had to stand up, or should others be more aware of their behaviour towards people who are not the same as them?

Having a condition that people would prefer you kept to myself because of others discomfort, or that people laugh about has a huge impact on mental health. Not only because it makes you want to change yourself to please others, but because by mocking sufferers the message being sent out in the world is that TS is not a serious condition. Tourette’s is a neurological condition which can be painful, tiring and in some cases life-altering – would people laugh at other neurological conditions in the same vein? Do people openly make fun of other people in pain and fatigue, by making them the punch-line in an insensitive gag? Some of you may think yes, but as someone with a multitude of conditions with these type of symptoms it really isn’t in the same ballpark.

We now live in a world where mental health is finally being given the recognition it deserves, so isn’t it time we start considering how our own behaviour can have an impact on how someone else feels.

Taking inspiration from the Tourette’s Association’s shareable stories I wanted to say Tourette’s isn’t a punchline, a quip, an excuse or a slur it is a mark of determination, bravery and courage. The determination of a teenage sitting their exams whilst battling to concentrate, the bravery of a man opening up to his date for the first time, the courage of a young woman telling her potential employer about her condition then getting overlooked anyway.

With all this said, I wanted to finish off this post by asking anyone reading this to take the Tourette’s pledge. A pledge to stop using Tourette’s as a slur or a punchline. A pledge to see Tourette’s as a condition that is as important as any other. A pledge to help us break free of the stigma. A pledge to show others they are accepted for who they are and not what their tics do.

Thank you for your support 💕

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · Tips

The Month of May – Awareness Days/Weeks

14th May 20218th May 2022 memyselfandchronicillness6 Comments

Wow the month of May really is a busy one when it comes to awareness events. Especially when three of your conditions have their awareness days all in the same week, the same day even!

We have Fibromyalgia awareness day on 12th and depending on where you are in the world for the whole of May. M.E awareness day again on 12th and awareness week 9th -15th (Updated for 2022) . Finally, Mental Health week from 9th-15th May. (Updated for 2022).

For more information on living with each condition – check out my previous blogs posts here: Fibromyalgia, ME/CFS and Mental Health.

Why are awareness days significant?

Many people would argue that technically awareness of conditions should be something that is happening all year round and not just at a particular time of year, and I would agree. However, awareness days are great for a number of reasons too.

Firstly, they help you to engage with others with the same conditions as you come together to get the word out.

Secondly, when there is an influx of information on social media things are more likely to be seen and read rather than be dismissed, with the hope to educate others.

Thirdly, it can help to reach people who may be struggling and give a sense of community.

Finally, they can hopefully help to raise some much needed money for the charities that help us the most.

The downsides to awareness days

As someone with a chronic illness you can often feel an overwhelming pressure to fly the flag for your particular condition, like it’s your duty. When you blog about chronic illness, you can feel an obligation to do something to show support.

This year I started out with vigour, researching what different charities were doing for the day/week (online of course), and made a conscious decision that I would show my support with various ones in order to represent all three of my conditions. All it would take was sharing a few social media posts each day, and completing a few ways to wellness activities (mental health related).

Day 1 was great, I felt positive and productive and by day 2 I crashed. A mere two days in!! To begin with I couldn’t understand this overwhelming fatigue – sure I am used to it happening, but usually I have an idea why. Then it hit me – it was the awareness planning. Not necessarily the tweets themselves, but the planning of what to write, accessing templates, when to send them, and the fact I was trying to do it for three separate conditions.

Photo by Andrea Piacquadio on Pexels.com

It was this moment I decided I had no choice, but to scale back. Still show my support yes, (luckily I had scheduled several tweets to go out later in the week), but to stop and put my needs first, and if able to pick it up a few days later.

In hindsight, I think maybe I should have picked one condition to focus on , or maybe one day. Nevertheless I did my best and that is enough. Wow wee, with comments like this I think my mental health has definitely improved!!!

What I am trying to say is you should never feel guilty for putting your health first. As I mentioned at the start of this post technically awareness is all year round, not just for one day or one week.

What you can do to raise awareness.

Equally if you do feel like you would like to do something, don’t be confined to a date and make it an action that is doable for you. You could:

Re-tweet or share a post
Start a conversation with a loved one
Direct people to your favourite charity
Make a piece of art
Donate or purchase an item from an online charity shop
Share your story with others

Being chronically ill you are raising awareness all the time through the people you meet and your family and friends. In turn these people will also raise awareness when talking about your situation with others, and hopefully the domino effect begins. This is what awareness is all about – changing perception, teaching others and getting the word out there.

Sarah xx