An Open Letter to the People Who Have Accused Me of Lying About My Illness

I want to put this blog out as an "open letter" to anyone who has ever accused someone of lying about having an illness. I myself have been judged, countless times, both online and in real life, and the thing is it's hard enough when people who don't understand what it's like accuse you and judge you but when other people who have chronic illness as their real
ity judge you, that's a whole different story. So here is my open letter.

To the people who accused me of lying about my chronic illnesses,
                                                                                                           You have no idea what you have done, you have no idea how you have made me feel. My chronic illnesses are something which make me feel horribly insecure and you have picked apart my insecurities and picked on my weaknesses.

Why must you do it?
What gives you the right to say I am faking what is wrong with me?

We're all different, every single person is different, our bodies function in different ways and our bodies work in different ways, even if you take 2 people with chronic illnesses, even 2 people with the exact same illness, those 2 people are not going to experience things exactly the same way, what we experience is unique to us and for you to say I am faking what is wrong with me because my story and/or symptoms don't correlate with someone else's or because my story doesn't "add up", what gives you the right?

What did you believe you were going to achieve by putting me down and embarrassing me in front of
everybody?
Did you think it made you the "bigger person"?
Did you think it would make you "more liked" by everyone else?
Did you think it would be fun to call me names and rip me apart?

You know what I did when I found out you believed that I was lying? I broke down, I burst into tears and I broke down because I am already insecure as it is and you went and insisted on making that a great deal more difficult to deal with.

My battle with chronic illness is not something I'm "ashamed" of and that is why I talk about it to the extent I do. I talk about my journey so that other people maybe don't feel as alone in fighting their own battle if they know someone else is going through similar/some of the same things as they are, I don't talk about it to gain

"negative attention and/or feedback" from other people, I don't talk about to gain sympathy from other people who hear of my journey. Everybody has different ways of coping with things and one of my ways is talking about things, that is what helps me get through difficult times so well, as the old saying goes "a problem shared is a problem halved". Yes I know I post a lot about my battle with chronic illnesses and yes I know I put my life out on the internet but that does not give you the right to pick at me, to call me names, and to make me feel tiny and small.

The thing is it wasn't even just one snarky remark I could have maybe have laughed away as someone not understanding you proceeded to pick apart every single piece of my story and continually let me know where things didn't "add up", you made me paranoid that horrific things had happened i.e. someone had spoken with my medical team or someone had even had access to my medical records, I believe this was just a personal vendetta against me in attempt to make me feel like I constantly had to look over my shoulder, I believe you wanted me to now spend my life living in fear, however, to this day, a the thought that you could be

speaking the truth niggles away at me and leaves me feeling scared and paranoid.

Even now, I do get scared, I feel fear posting things online that someone may start attacking me for no reason, I get scared when people send me any sort of questions now as I feel they're asking me things in an attempt to "catch me out", that someone is going to judge me, or someone's going to accuse me of lying, or just to get information about me to use against me.

I think one of the issues is most people that spend their time making such accusations against other people, they don't have any sort of idea what it feels like to have your own health conditions and journey used against you in such a harsh and horrific way. I think the only way you can come close to understanding what it's like to be accused of lying about something that you spend nearly every waking moment wishing was a lie.

I'd love to be healthy, I'd love to have not missed out on so many different things in life as a result of my health issues and I'd absolutely love to not have had to have given up countless things as a the result of my health. I hope by raising awareness of what it's like to go through being accused of lying about ill health can help bring to light how difficult such things can be for a person fighting a battle and also to show it's really not alright to go out and accuse people.

I have health problems but they are not me (a poem)

I always thought I’d be that girl,

The girl who grew up to achieve all wonders of the world, 

I planned my future in depth,

An engagement, a wedding, a great job and maybe even kids one day.

As I sat there at 15 years old, staring out at the hustle and bustle of A&E I began to doubt myself,

If I knew back then what I know now, I often wonder how much it could have changed things.

As time progressed things only turned from bad to worse.

My life became revolved around a monster eating away at my soul and my very being.

                                                                                         

First it was the brittle asthma, the asthma which left me struggling for breath with a complete fear and panic of the impending doom still to come.

Soon multiple allergies and anaphylaxis were thrown into the mix where I was once again faced with the real reality I could die,

Intensive care stay after Intensive care stay occurred,

I began feeling terrorised by the various conditions which plagued me.

School was hard, I wanted to do well, really I did,

I knuckled down as best as I could whilst fighting a series of life-changing chronic illnesses and continued to strive high.

My overall ambition was to get to University, I faced setback after setback, I faced negative comments essentially instructing me to just give up.

My life had changed dramatically within the flip of a coin,

No longer was I the care free teenager with only homework to worry about,

Instead of learning valuable life lessons I was learning what things like “arterial blood gases” and “tachycardia” are,

My life began to revolve around a place I should have never been able to define as “my second home” the various wards of the hospital where I fought constant battles to stay as okay as can be.

By 2012 I was hit by a blow back,

I made the decision to re-do my final year at school, 

After school passed by I went to summer school,

On receiving my exam results I felt horrendously sick,

This one envelope is about to dictate my entire future,

1 B and 2 C’s, not meeting my conditional offer of 4 B’s,

However, I then learned I’d been accepted based on my summer school report,

Ecstatic didn’t even come close to describing that day.

On starting University things seemed to be looking up,

Sadly, the course of chronic illness never does run smooth,

I began suffering seizure after seizure, baffling doctors as to why it was occurring,

Within a few years I had my diagnoses,

Non-Epileptic seizures/Functional Neurological Disorder,

My seizures stole my ability to start taking driving lessons again,

They chased away my independence,

They lost me experiences and relationships

In all honestly, I felt like I’d lost it all.

I went on to repeat my 1^st year at University,

My hopes remained high this was fixable,

I still wanted to do well,

My body however, caused me a series of problems.

By March 2015 I’d began to fight a new issue,

Inability to keep any sort of food or fluids down,

Doctor after doctor said:

“It’s just a bug”

“It’s something you’ve eaten”,

These assumptions were far from the reality,

My first feeding tube in April 2015 displayed just how hard things were going.

May 2015 was the month I medically withdrew from University,

Breaking my heart in the process,

So many unknowns began circulating my mind involving:

“What now?”

“Why me?”

So much I couldn’t understand or comprehend.

I came across The Open University,

A flexible, distance-learning University which offers part-time courses,

Maybe this meant my dreams and hopes for the future did not have to disappear,

I jumped at the chance and enrolled onto a course I’ve learned to love and appreciate,

I’m thankful for my second chance.

I continued to live with a feeding tube, 

My doctors remained optimistic this would pass,

They believed that as it started out of nowhere it would stop out of nowhere,

2 trial periods of 10 weeks each without a feeding tube brought about no improvement or answers, only worsening symptoms,

3 years passed and still all felt hopeless,

Feeding tube after feeding tube,

I cannot begin to describe the mental and physical pain that comes alongside it all.

A diagnosis I was finally given,

“You’ve got functional/psychosomatic vomiting” they said,

I was clueless and the internet held no clues,

I feel deep into struggling mentally uncertain of what my future would hold,

My condition is where my body registers food and drink I consume orally as harmful,

Almost like if you ate something incorrectly cooked and end up ill,

However, the difference between that and my new reality is,

My body is not under any “threat” as my mind attempts to protect myself from what it sees as something that shouldn’t be here.

It’s now August 2018,

So much has happened in the space of nearly 10 years,

I’ve faced countless terrifying situations, dealt with great deals of uncertainty,

I’ve struggled with demons, both mental and physical, I wouldn’t wish upon anyone.

What keeps me strong through all of this is my support network,

My fantastic boyfriend who never walks away even during hard periods,

My best friends who see me for more than the illnesses I live with,

My family who visit me in the hospital in an attempt to make me smile.

I find it difficult to comprehend almost all of the time, 

I live a life with so many unknowns, feeling so unsure about most situations,

I struggle to plan ahead, unsure what will happen tomorrow let alone next month,

However, I keep going, I keep fighting, I never give up no matter how difficult I feel things are,

I will not let chronic illnesses and mental health problems destroy the person I am,

I am much more than a series of symptoms, a list of conditions,

I love Harry Potter, stars and butterflies make me smile, I feel intrigued by medicine, it’s been a lifelong passion for me.

Many people ask, “well how do you do it?”,

Many people question how one can remain so strong through such adversity,

The truth is you just have to keep going,

You wake up some days and just never want to get out of bed,

You struggle to sleep at nights, leaving you mentally and physically even more exhausted,

Yet you never give up, you never let this win,

I am a fighter, I am a warrior, however, I’ve spent much of the past 10 years, nearly, living in the shadows of my adversity,

I’d get down, I’d think too much and I’d constantly just want it to be over,

Now I see things in a different light,

I see a future, I hold out hope for improvements,

Most importantly though,

I treat each day as a new beginning,

Today may be awful, maybe it feels like the worst day of your life thus far,

However, the “awful” today does not have to dictate how your tomorrow may be.

When living with illness one may concentrate on “I CAN’T do that” “My body and/or mind prohibits me from doing that”,

I used to think that way too, concentrate on the negatives of the situation, never understanding how there could be any ray of light in such a horrible situation, 

Now I would say I view things in a different sense,

I concentrate on the things I CAN do,

I make adjustments and find ways to explore things I’d love to do,

Sometimes illness stands in the way,

Sometimes you may not be able to achieve all you want,

However, that’s okay,

Life is a challenge, not just for those ill but for those seemingly “un-phased” and “normal” people you are often exposed to in your day to day living,

We all face demons of some sort,

We all face challenges,

We all feel fear and terror,

However, it’s about how you deal with all of these emotions and experiences that shows the type of person you really are.

My experience of getting an NG (Nasogastric) feeding tube for the first time

* Please note, I am not a qualified medical professional so I'd advise following the advice of your medical team.*

I've lived with a feeding tube since April 2015 due to functional/psychosomatic vomiting, this is where when I ingest things normally (via mouth) my body becomes on high-alert and sends the wrong signals to my stomach in the form of oral-intake being harmful to my body and in turn these wrong signals result in my inability to keep food down. When I first got an NG tube the idea was really daunting, I had no idea what to expect. I was in hospital for weeks and had started drastically losing weight (I'd lost 2 stone/28lbs/13kg in a very short space of time). I wasn't tolerating anything orally. I was told if trying just Ensure supplement drinks didn't work then we'd have to trial an NG tube. I remember feeling really scared so I did what people naturally do, Google search. For me it was a bad idea! It sounded absolutely terrifying and I pleaded with my body to tolerate supplement drinks, unfortunately it didn't so we had to place an NG tube. 

I had my boyfriend beside me the whole time which helped, it might help anyone who's having to get a feeding tube to have someone sit with them and help put them at ease. A nurse placed my feeding tube, it may however be a doctor who places your tube. The nurse explained the procedure and showed me the NG tube. I never realised a thin tube could be so daunting! Lubricant was placed on the end of the feeding tube that would be going into my nose. I was also handed a sick bowl and a cup of water with a straw. The tube is placed into your nose which can feel uncomfortable and can tickle the inside of your nose. It's then pushed gently to the back of your nose, following your nasal canal at a curve down to the back of your throat where your gag reflex is. You're effectively trying to swallow the tube down as it helps it bypass your gag reflex. I'd say this is the most difficult part and can be a little distressing. It can cause you to gag as if you are going to be sick. The biggest thing to remember is to breathe. It can cause your eyes to water from gagging. The person doing the procedure can stop and pull out the tube but if possible getting it done in a one is the best way and least distressing. Once it's past the back of your throat I'd personally say that's the worst part out the way. It's pushed gently down your esophogus into your stomach. Every hospital differs in how they check the tube is in place. Some take a syringe with a little air in it and push it into the tube whilst listening to your stomach with a stethoscope. Some send you for an x-ray of your chest to confirm it's not in your airway. Some places take a syringe and aspirate the NG tube, this is where you pull back with gentle pressure to produce some stomach contents and then a special strip called a PH strip is used to check the PH of the stomach contents. Some hospitals, including my own, may do a combination of 2 or all 3 of them. Once placement is confirmed as being in your stomach they flush the tube with some water. This isn't painful (for most people), it can feel a little strange, I describe it as drinking a glass of water but I'm not drinking. They then start feeds at a slow rate. NG tubes feel really weird at first, it's odd swallowing and having a tube in your throat but I found after a short while I forgot it was there. They can hurt your throat after a while, my advice for that would be: having a cold drink if you can tolerate it; gargling with salt water; throat lozenges; ice cubes; ice cream/ice lollies. I personally wouldn't say placement of a tube hurts, it can be uncomfortable but I wouldn't describe it as sore but everyone's experience is different. Something I would advise when the idea of an NG tube is suggested is to ask any questions you have about it, even if they seem silly, it can really help put your mind at ease and can make it seem less scary.

My DM's are always open ☺️ I'm happy to answer any questions about placement of a tube or about having a tube longer term. I've had an NG tube for the most part of the past 3 years. I was taught to self-insert them as for me they come out relatively frequently so it saves on trips to the hospital and I actually find it easier inserting them myself. The biggest thing to remember is an NG tube isn't the worst thing to happen and it's helping you out when you're struggling 

<3

I remember...

I remember we sat together and watched the sun set, 

Your beaming brown eyes gazed into mine that I'll never forget. 

Your voice as though music echoed in my ears, 

Your velvet soft fingers wiped away my tears. 

I remember your smile brightening up my life, 

As you kissed me on the forehead and whispered "goodnight". 

We continued to watch the sun, 

Our hearts beat as one, 

The birds sat silently in their nests, 

As you continued to hold me to your chest. 

I remember daylight fading fast, 

I know that soon, everything would become the past. 

I remember how it felt to live a lie, 

Sometimes I just sit and wonder why? 

A lot of the time I don't understand, 

Why can't I just leave the past behind and forget? 

The kiss of your lips or the touch of your hands, 

There are moments I wish we'd never met. 

I wish that all of it wasn't real, 

I truly thought that this was my time to heal. 

It was just our time to separate and part, 

If only you didn't own my heart.

30 things about my chronic illnesses

1. The illnesses I live with are:

• Brittle asthma
• Multiple allergies
• Anaphylaxis
• Essential tremor 
• Non-epileptic seizures 
• Dissociative attacks (hallucinations, disorientation and confusion)
• Acute urinary retention 
• Secondary adrenal insufficiency 
• Functional vomiting 

2. I was diagnosed with them in the year:

• Brittle asthma (aged 15)
• Multiple allergies (aged 15)
• Anaphylaxis (aged 16)
• Essential tremor (aged 14)
• Non-epileptic seizures (aged 23)
• Dissociative attacks (aged 23) 
• Acute urinary retention (aged 19)
• Secondary adrenal insufficiency (aged 21)
• Functional vomiting (aged 22)
• Hypoglycemia (aged 23)

3. But I have had symptoms since:

• Brittle asthma (aged 14)
• Multiple allergies (aged 5)
• Anaphylaxis (aged 16)
• Essential tremor (aged 8)
• Non-epileptic seizures (aged 19)
• Dissociative attacks (aged 22)
• Acute urinary retention (aged 18)
• Secondary adrenal insufficiency (aged 18)
• Functional vomiting (aged 20)
• Hypoglycemia (aged 23)

4. The biggest adjustment I’ve had to make is:

• Being aware of my asthma triggers 
• Reading the labels on every item of food to check it doesn't contain my allergens 
• Using a feeding tube 
• Taking daily medications 
• Carrying emergency medications around with me 

5. Most people assume:

• All asthma is, is taking a blue inhaler and then you'll be okay. However, for me and so many others it is so much more than that. 
• People assume that anaphylaxis is just a food allergy and taking a tablet will make things better. The reality is anaphylaxis can kill if not treated properly. It is never just avoiding foods as it is not just foods that may contain your allergen. Many cosmetic products can also contain it. People assume depression is like having a bad day, things always get better in the morning. Sometimes it can be that way but other times you feel so low that you feel like there is no point anymore. 
• As I use a feeding tube I don't eat or drink things normally. I still have to attempt to eat and drink normally as how will I know if I'm better if I don't try? 
• People tend to think I'm either drunk or under the influence of drugs if I have a seizure or dissociative episode, this can sometimes deter people away from attempting to help me if this happens in public.

6. The hardest part about mornings are:

Waking up early. If I have been taking steroids to counteract inflammation then sometimes it causes steroid related insomnia which causes me to be awake for hours on end at night without being able to sleep even if I am tired. Some of my normal daily medications carry the side effect of drowsiness and it can be difficult to wake up if you are extremely drowsy.

7. My favorite medical TV show is:

Casualty! I cannot go without my weekly fix of Casualty. February 2013 I was granted a wish from the charity Dreams Come True. I chose to visit the set of Casualty (ironic that is haha).

8. A gadget I couldn’t live without is:

My mobile phone! Need I say anymore?

9. The hardest part about nights are:

Trying hard not to over think and get myself really stressed and worked up about nothing. 

10. Each day I take __ pills & vitamins. 

Morning: 6 medications (2 tablets and 4 liquids) and 2 inhalers 
Middle of the day: 4 medications (2 tablets and 2 liquids) 
Night time: 5 medications (2 tablets and 2 liquids) and 1 inhaler 


11. Regarding alternative treatments I:

Believe some work while others are just either people trying to make money out of people. I have personally tried something called The Salt Caves. I find it really helps to open up my airways, keep me out of hospital and stop any bacteria from causing me problems. It's been a complete life changer for me and has drastically improved my asthma symptoms as well as allowed me to decrease the amount of medication I am using.

12. If I had to choose between an invisible illness or visible I would choose:

On my bad days I would chose to have a visible illness because even on bad days people still have something judgemental to say. I've been accused of over-exaggerating, had people tell me to "just get over it" as well as people trying to claim that I'm making things up. I think if people can see an illness they treat you differently to if they cannot see one. 

13. Regarding working and career:

Education and work have been really difficult for me with chronic illnesses. I had to take a lot of time out of education due to being ill. However, it has not affected me dreams. It makes me a lot more determined to achieve the things I desire. The biggest example of this is when I strived to get to University and through a lot of hard-work and determination, I got there. 

14. People would be surprised to know:

I do not constantly put everything about my illness over social media. I don't always let people know when I have been admitted to hospital.

15. The hardest thing to accept about my new reality has been:

Giving up some of the things I used to love, taking medications daily to keep me alive and as okay as possible, the horrible side-effects of steroid medication and having to stop eating foods I once enjoyed. 

16. Something I never thought I could do with my illness that I did was:

Get to University. Despite struggling, I got there in the end.

17. The commercials about my illness:

Help raise awareness of my reality and everything I go through on a daily basis.

18. Something I really miss doing since I was diagnosed is:

Going on holiday, I haven't been abroad in a number of years (8 years), it's something I'd love to do again.

19. It was really hard to have to give up:

Nuts and peanuts.

20. A new hobby I have taken up since my diagnosis is:

Writing.

21. If I could have one day of feeling normal again I would:

Enjoy eating whatever I like without having to worry about what the food contains and whether or not it's safe for me.
22. My illness has taught me:

Who truly matters in life. The people who never judge you no matter what and have been there the whole way through without walking away or treating you differently are the ones who deserve to be in your life. 

23. Want to know a secret? One thing people say that gets under my skin is:

"It's just a cold"...to someone with a normal immune system a cold is a slight sniffle, maybe at worse you need to take a day or two off work to stay in bed...however to someone with severe asthma a cold is not just that. A cold is like the flu 100 times over. It's a potential chest infection, a large chance of ending up staying in hospital and maybe even a stay in intensive care or high dependency. 

24. But I love it when people:

Treat me the same as any other person my age. 

25. My favorite motto, scripture, quote that gets me through tough times is:

"You were given this life because you are strong enough to live it"

26. When someone is diagnosed I’d like to tell them:

Even though it is going to be hard things do get easier.

27. Something that has surprised me about living with an illness is:

You value the little things (such as: getting dressed, going to University, managing a week healthy) so much. Even though to others they are not big things, for you and others with chronic health issues...they are everything. 

28. The nicest thing someone did for me when I wasn't feeling well was: 

Held my hand, hugged me, told me everything would be okay in the end. 

29. I’m involved with Invisible Illness Week because:

96% of chronic illnesses are invisible...more awareness needs to be raised. 

30. The fact that you read this list makes me feel:

Maybe you finally understand somewhat of what I go through.