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Instead of ‘Get well soon!’

If you, too, squirm every time you hear ‘get well soon!’ Then this is for you, with love, from me 🥰

I just want to preface that there is nuance here! Of course the intentions of ‘get well soon’ are good and it’s a way to show you care. But for many of us with mental health conditions, chronic illnesses, disabilities, or many other ailments, hearing it over and over again can be really grating, passive, and is a reminder of something that might not, or in some cases will never, happen. In some cases, when said repeatedly even after being told by someone that these words are hurtful, they are an ableist microaggression. I am done with feeling ashamed about not liking these words. Why on earth wouldn’t we all want to use more inclusive language? Why wouldn’t we want to say something that is more helpful than just ‘feel better’? If this isn’t for you that’s fine, I hope another post of mine is more helpful! But I think language can be really important in helping us empathise with other people. In this case, people who are constantly ‘not well’ and may never be completely ‘better’ 🌸 

Obviously the relationship you have with the person dictates what you will say, but if in doubt, a funny meme or cute baby animal picture is usually guaranteed to make someone feel loved! 

ID: Title reads ‘what to say instead of get well soon’ with six cute illustrated mushrooms, each attached to a different phrase: 1 you’re coping really well!

2 would you like to talk about it?

3 I’m here for you

4 I’m happy to listen to you

5 that sounds so hard

6 let me know if I can do anything

to help?

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How to cope with Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

Endometriosis is an inflammatory chronic condition. Unfortunately there is no complete cure, and some things will work better for some people and not work at all for others. However, here are my own tried and tested coping techniques for this incredibly painful condition.

🍵 green tea has been found in some studies to have a positive impact on those with endometriosis 

❤️‍🔥 everyone knows how comforting a hot water bottle can be, and it is a reliable aid for any cramp

⚡️ I CANNOT begin to express how much of a life saver my tens machine has been! This post is not sponsored by @ovira but they are a wonderful company I use my ovira tens machine every day, it helps my chronic joint pain as well as my Endometriosis pain. Shop for your own here!

☀️ I am sure many of you are aware how beneficial Vitamin C, Magnesium, and Vitamin D are in general, but they are also wonderful for Endometriosis! Starflower oil is another supplement that many find helpful.

🍣 eating a diet of nuts, seeds, avocado, fatty fish and other anti-inflammatory food can lower inflammation and strengthen your immune system! 

💦 drink more water! A reminder we always need, or at least I do!

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

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Medical Sexism & Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men.

The Guardian, Marie Claire, Harvard

Pain in women is not taken seriously. Fatphobia, racism, classism, poverty, and more, all contribute to injustice in the healthcare system. But when it comes to the medical sphere, sexism is perhaps the most predominant form of discrimination. The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men. There is one thing that would save the lives of so many with Endometriosis: Listening to female patients. 

When I was diagnosed with endometriosis last year I was told it had been growing for up to 8 years. I had debilitating periods my whole life, to the point where I couldn’t attend school, couldn’t move from bed every month. I was told that Ehlers Danlos Syndrome makes period pain worse, so thought I just had to deal with it like every other symptom. Due to gaslighting from doctors and teachers, I did not take my pain seriously. Constant pain is my normal, so I couldn’t tell the difference when the pain was fatal! Please don’t make the same mistake I did. Endometriosis is extremely serious, and many people don’t realise they may have it.

If you have endometriosis or any other chronic condition I want you to know this. You are not overreacting. You are not weak. You are not lazy. You are coping incredibly well with something that makes it nearly impossible to get out of bed each day and choose to continue living. 

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

Image Description: The words ‘Part of being a woman and dealing with reproductive health is being treated like you’re not human. Is being treated like you’re a robot, and you’re supposed to wake up every day and get over it – Halsey’ next to a drawing of Halsey

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Feeling Ill?

Things that helped me survive Covid, and should help you cope with any illness:

💉 Vaccines!!!

🫁 Deep Breathing Exercises

🧊 Migraine Patches

🍯 Honey, lemon, ginger & apple cider vinegar in hot water (a dream for sore throats!) 

🧼 Bubble Baths

🍋 Honey & Lemon flavour chloraseptic anaesthetic throat spray

🍊 Vitamin C & Probiotic

🤧 When you’re sick, do less than you feel able to, fatigue is hard to deal with so don’t go back to your ‘normal’ too soon! Take any exercise or movement gently.

😴 Make sure you rest as much as you can, put on a good TV show or your comfort movie, sleep lots, and keep drinking water and warm drinks. My chosen distraction was The Good Place, a show that I can confirm only gets better with rewatching!

😘 Your work and other responsibilities can wait. Nothing is more important than your own health so try to clear your plans and schedule time to just heal. (this is harder to do in practice, of course!)

Sickness on top of chronic illness or disability is hard for so many reasons, so if you, like me, have to deal with both, I hope you are really proud of yourself! Your strength is hardly ever recognised and even less frequently celebrated, but I see you. You’re doing great, sweet tea 🤪☕️

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100%

Something I like to think about is how my body has got me through 100% of the painful days so far. 

For all of the resentment I give my body for being broken, for not working properly, for hurting, for betraying me… it deserves credit for surviving. Survival is pretty much the only comfort there is when you’re chronically ill. I can’t tell myself I will recover. I can’t say I will feel better tomorrow, next week, or even next year. It’s another thing that is taken away, the comfort of recovery, the ability to imagine a future where I am ‘better’. In the midst of agony, I can tell myself it is temporary, but I won’t believe it. Because my pain is not temporary, it’s chronic. That means it doesn’t end, it just becomes different. Worse, maybe. Quieter, hopefully. Gone, never. But I have hope. 

I have hope that a painkiller that doesn’t give me side effects and does take away my pain is discovered. I have knowledge that new video games will be created that I can escape into briefly. And I have thoughts that tell me ‘You’ve survived before, and you can do it again. Your attendance record at life is 100%’

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I got Covid…


It’s been 2 years.

Of fearing for my life. Of being told by people I loved that if I died that was just ‘the way the cookie crumbled’. Of having ‘survival of the fittest’ and ‘natural selection’ shoved down my throat as if they are not eugenics.

In January, I tested positive for Covid-19. Thanks to the vaccines, I am alive. But the process of getting vaccinated is not safe/supportive enough for chronically ill people. This was preventable. This could have been avoided. But now this is the world we live in… a world where disabled people are made to feel unsafe. Where they know that, in the eyes of the government, and many members of the public, they are expendable. I am grateful to be alive and I am scared of living. 

Things that helped me survive Covid:

💉 Vaccines!!!

🫁 Deep Breathing Exercises

🧊 Migraine Patches

🍯 Honey, lemon, ginger & apple cider vinegar in hot water (a dream for sore throats!) 

🧼 Bubble Baths

🍋 Honey & Lemon flavour chloraseptic anaesthetic throat spray

🍊 Vitamin C & Probiotic

🤧 When you’re sick, do less than you feel able to, fatigue is hard to deal with so don’t go back to your ‘normal’ too soon! Take any exercise or movement gently.

😴 Make sure you rest as much as you can, put on a good TV show or your comfort movie, sleep lots, and keep drinking water and warm drinks. My chosen distraction was The Good Place, a show that I can confirm only gets better with rewatching!

😘 Your work and other responsibilities can wait. Nothing is more important than your own health so try to clear your plans and schedule time to just heal. (this is harder to do in practice, of course!)

Sickness on top of chronic illness or disability is hard for so many reasons, so if you, like me, have to deal with both, I hope you are really proud of yourself! Your strength is hardly ever recognised and even less frequently celebrated, but I see you. You’re doing great, sweet tea 🤪☕️

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Endometriosis

The NHS nearly killed me. The NHS saved my life.

I don’t know how to talk about this.
Unexplained period and bowel pain for my entire life. An 8 cm ovarian cyst. A test with a result. Relief spiralled into Gaslighting. A private blessing. A hidden complication. And me.
Waking up from a major complex surgery without painkillers, intolerant to every medication they tried, throwing up for hours with stitches, unable to move…

I can’t comprehend the glass window I look through. Memories shatter and visit me in fractured pieces puncturing my heart. How could I treat myself like that? How did I manage to cope, and not only cope but edit podcasts, live and love and function with this incredible pain?! I even became a freaking politician during all of this! (Hi, I am a town councillor now, vote for me when I apply to be an MP won’t you?)

A list of things that kept me sane: Lin Manuel Miranda, Taylor Swift, My mother, the person who taught me strength.

How could I be such a hypocrite and forgive myself for it… Will I ever forgive myself? Another diagnosis. How many does that make now? The doctor said I had been dealing with Endometriosis for years. The doctor said it was shocking my local hospital had tried to make me wait until the end of September for a consultation, not even the operation. The doctor said they should have operated when the first found it 6 weeks ago. What a wild thing, to be believed by a doctor.

And the heart breaking dichotomy that always strikes? The NHS nearly killed me. The NHS saved my life.

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Pain & Joy

This is the face of someone who has just been discharged from hospital and narrowly avoided an operation. This is the face of someone who is loved and cared for by a lot of incredible friends. This is also the face of someone dealing with incurable excruciating pain without painkillers, it is the face of someone who misses their mum, it is the face of someone who is so close to being done.

Pain exists at the same time as joy. There is never one without the other. They sit side by side and sometimes they coincide and on difficult days they collide.

This is my face, and I find it remarkable how many marks it is missing, considering all those collisions.

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The Gap Between Two Healthcare Worlds

Dominique Viel, founder of InvisiYouth, shares her story with us today!

‘When people find out I launched InvisiYouth Charity five years ago when I was 22, the follow-up questions tend to all fall into the categories of “How did you come up with a nonprofit supporting young adult chronic illness lifestyle?” or “You’re so young to run a nonprofit, how do you manage it?” or even “What makes young adult healthcare so different from pediatrics and adults?” If you look at it, the main theme stemming through all the questions around my philanthropy is a lack of understanding the young adult experience and what makes it one of the most vital times for an individual to be supported. 

I was a teenage competitive tennis player with a laser focus on the life I wanted to live, but one injury resulted into years without proper diagnosis and complicated treatments as my chronic illnesses began to take center stage. I’m lucky I have a supportive family that stood by my side through all the horribly challenging times, like my mom being at every doctor’s appointment. “This is your health and your body, Dominique,” my mom would say. “No matter how old you are, you have to remember you are the patient and deserve to be as active of a participant in your healthcare as you can.” 

It was her encouragement to always ask those “why” questions to our doctors when I didn’t understand or didn’t agree with a treatment plan that mattered the most as I began transitioning from pediatric to adult healthcare. When you’re in that 13-35 age demographic dealing with health struggles, you fall into the gap between these two healthcare worlds. You’re not dependent on others to make choices for yourself, but you shouldn’t be thrown into the deep-end of your treatment programs. You’re in the most critical time of your life, cultivating what matters to you, establishing your voice, and building your future life…but there’s no healthcare to specifically support you.  

That fear of being invisible in my own healthcare journey fueled my passion to build InvisiYouth Charity, a global nonprofit helping teens and young adults with chronic illness or disability (physical AND mental) to have the right lifestyle tools, virtual resources, leadership programs and empowerment to thrive with any health struggles. You’re never ‘invisible’ with InvisiYouth, but rather ‘invincible’ because this population has the best skills to adapt, conquer, and excel. It is my goal that every young adult has tools to know they are represented, validated and supported on their unique health journey.

My chronic illnesses have become my life’s teammates and no longer the enemy taking value away. I will always crave gaining knowledge and sparks of joy from my life and work. I wake up and go to sleep as a person with a purpose that happens to also have chronic illnesses. Each day I work to pursue my goals, make InvisiYouth better, and always give back so others can feel just as knowledgeable to thrive in their daily lives like I do.’

You can find more about this charity on their website or @InvisiYouth on Instagram.