Regardless of the illness you may individually have, it likely has many names, from Chronic, degenerative, disabling, terminal, auto-immune, neurological, benign, mental ... and invisible.
When I say I have a “chronic illness,” I am specifying the length of time this illness is likely going to stick around.
But when I say I have an “invisible illness” i am describing a condition that is hidden to those who are around us. Which shouldn’t really matter. It shouldn’t really matter whether people can see my bloating, or my stubborn confused cells, or my digestive issues, or chemical imbalances, the infections, Low Blood Pressure, The Hypothyroidism, PTSD, Anxiety .... The list is endless
Because it’s still there even if it can’t be seen.
But for some reason — it does matter.
If it is affecting, you - me - ANYONE - IT DOES MATTER !
The biggest adaptation I have had to make is: forgetting who and what i was before this blinkin illness struck, the person I was before. Hard Working - Social - Friendly - Outgoing - Competative -
Learning my identity again Has been a struggle. OK - a struggle that im not really yet finished with - I will always FIGHT !! I want to be who i was - OK - may NOT be possible - But - I can try !!
I now have to Micromanage every day with what needs to be done, and i do as much the night before - in OCD style fashion - Just in case the day after - I am unable to get out of bed - My energy level = Zilch , The severity of my symptoms during the day, with medication and without, timing of when i take individual meds - from, Thyroid tablets - without which i would go into a waking coma - Blood pressure tablets, Seritonin Substitute Tablets, headache tablets, Tablets to relieve pressure in my head and then to Diazepam, a Grade 4 - CONTROLLED drug = Im taking this as a neurotransmitter that moderates the activity of nerve signals in the brain. It does work - It calms my brain totally - It is intended for short-term use. I have been on it for nearly two years - They say short term - Because it may be habit-forming, it's not recommended that people take it for longer than four months. lol, I can take it for a few days and then am fine for a week - maybe two - and not need it at all - then - my symptoms start all over again ! And my reality - should i take one - two / ten / eleven ?? More ?? , and lots of preplanning, I OFTEN have dinner ready by 7am after i have showered and sorted the animals and gotton dressed - because - by 8am - I might be asleep - or crying uncontrollably or trying desperately to overdose on Paracetamol, Codene, and Ibruprofen .... .
Most people assume: A smile & positive outlook mean everything is okay. It does'nt - It just means it is the lesser of two evils - Give in - or smile - and GIVE IN IS ONE THING THAT IS NOT IN MY VOCABULARY !!
“Coming to terms” with a life-altering diagnosis is not an acceptance conclusion either … but a daily coping struggle.
The hardest part about my mornings are: Can i actually get up ? - But first - Tablets - Take tablets - kept beside my bed - and with EVERY EFFORT- GET UP - and get to the loo !! - Always wondering/waiting to see what kind of day it will be & waiting for medication to kick in, waiting to see what happens once i have had the endurance of showering / getting dressed - will i have to medicate again - or Will i make it downstairs - to get kids breakfast ready, and animals fed / let out ??
Regarding alternative treatments - I can't exercise due to extreme pain - or just that my brain shuts down, literally - i will walk up a flight of stairs - when i get to the top, i have to hold on as i am giddy - i can't breathe - ( NOT due to weight ) and i even lose speech - I can't think or remember or converse - it may take 1 to 30 minutes to 'sort my head out' = Should a VERY Short walk upstairs do that to someone ??
- Keep warm - I can't take a hot bath cause the water does not cover me - I can't wear lots of clothes because i am fat enough already and wearing more stops me moving even more - so I GO TO BED, the only way to keep warm !! -
The ONLY thing i can do relatively simply - is to STAY AT HOME - I enjoy peaceful home surroundings — Computer, making videos, writing blogs, scented candles, solitude, art, animals .. and I HATE BEING ALONE - No noise or light to set me off ... BUT I SO LOVE TO SING - But - Very often can't as music - i have to concentrate to listen to = and concentration makes my head shut down ...
If I had to choose between an invisible illness or visible I would choose: Visible. Though greatly misunderstood with “presumed normalcy”, I am different - and i embrace that - wholeheartedly - and in fact - it has made me into the person i am today - I am totally fed up of people thinking everything is fine - and i put on all my symptoms , often so they can avoid not-in-the-mood explanations of how i am feeling really - as i always just say whats happening - i have no worries there - im not shy ! Then there is the social discomfort directed toward me, which really just winds me up ! People should just say what they think - it makes life so much easier !!
Regarding working and career: Before I became ill - i worked from the age 11 - ( I used to come home from school - do homework - and go straight round to the local veterinary centre - where i would do everything from Cleaning / to animal care / to developing x-rays / steralise instruments / Man reception to administer anaesthetic / helping with operations, Then Nannying to the Veterinarians 4 small children - I then became a Motorcycle Instructor - Worked in a Hospital, Nothing would get in my way, I LOVED to work - hahahahah - Then it did - it got in my bloody way !! ....
Making a life with physical limitations, and HUGE Hormone problems & challenges is work. Enjoying life is a career.
People would be surprised to know: Even though I have had this illness for at least 9 years - Ever changing illness i should add - coping does not get easier with time. Life remains tough; I still grieve for the life i have lost - and the things i wanted to do ( Simple things like take the kids walking in the woods - or take them horse riding as i used to do as a kid - and LOVED - I cannot do any of that - LMAO - CAN YOU IMAGINE THE SIZE OF HORSE ID NEED ! and I can't take them as i now have no car - THATS been taken from me due to being very aggressive and then anxious within the space of seconds ) & alone, I cry. = Sometimes...
The hardest thing to accept about my new reality has been: the impact on those I love, Because - Take it from me - when i explode in a rage - I EXPLODE - and telling your thirteen year old son that you hate the f**** sight of him - and he has to leave and watching tears well in his eyes is THE WORST FEELING EVER, and then have him come back at you - saying that i do actually mean it - and if i didnt mean it - i would stop - WHY CAN'T I STOP - WHY WHY WHY WHY - and then he is trying to have the last word - because he is 13 - WHICH I NEED TO HAVE, I need to have my say. - this then turns me aggressive and almost - ALMOST violent - so far i have been able to control to violence - apart from throwing things - but - one day - i even scare myself...
Then knowing there isn’t a cure, & the grim reality of possible future progression. Treatment & coping are daily and for life. Also - The constant reminder that people think - IT CAN BE OVER COME - JUST BE STRONG = MIND OVER MATTER !! = Thats tough...
My illness has taught me: Everyone is Beautiful - Disability is NOT disability - Is is Uniqability !!
I don't have much Patience, faith, or hope,
BUT - I have the value of humor. and i love helping people and making them laugh when times are tough, and Thankfully I have a Positive and Confident Motivational Sense of being ! -
I WILL NOT LET THIS BEAT ME ! I am Discovering hidden resources of myself. The beauty of a moment. The miracle of simple. The stark reality of everyone’s mortality.
Life is fragile & beautiful.
Want to know a secret? One thing people say that gets under my skin is: In a condescending manner, you look good; you look healthy; ARE YOU BETTER NOW ??
You must be having a good day … undermining the severity of what I live by how I look. Or… “It’s just…” - Or - " wait to you see the consultant " - as tho - miraculasly - they are going to have had a Brain wave and KNOW how to cure me, when in fact the blinking SPECIALISTS KNOW LES THAN I DO ABOUT MY CONDITION and one has even suggested i try YOGA - at this point the lady was nearly headbutted ! - again minimizing the enormity of my reality.
But I love it when people tell me I inspire them. Helps give me reason & keeps me focused. - I love this more than anything - I love being Inspirational ! - and yeah - I BLOODY KNOW I AM !
When someone is diagnosed, I get a fair few comments and or messages over my internet pages, I try to tell them: I do actually 'get you'. I do however - make it lesser worry - by laughing and showing them how to live forward… in spite of everything, how to make symptoms a 'norm' rather than a worry - Laugh at the daft things you do - rather than worry about what people think - If people think lesser of you because of actions commited while you are having a hormone storm - Then - These 'people' are NOT ones I wish to know .. I do Video my 'Storms' and this is to actually SHOW people the differance between when i am ok - and when i am not - and - the difference is immence = I have - so far - not been able to show an anger - rage storm - as i usually am to busy swearing and going bonkers - but - i have twice now - SOMEHOW - taped the episode on an audio file - I will have to see if i can download it - It shows somewhat - the severity of the symptoms - and how - in any case - the huge amount of pressure in my brain and how - at any minute - amongst other things - i could have a stroke - Ohhhhhhh The fun things i deal with !
Something that has surprised me about living with an illness is: Experiencing the how 'ill' people FIND other Ill people !! - It is amazing - we kinda home in on others . We Discover a quirky creativity & sense of humor in a tragic diagnosis. Meeting some of the most amazing people living with adversity … inspirations, friends. The number of people who live with a rare/invisible illness & social stigmas is astounding.. You really have no idea by looking ....
“It makes you feel like a liar. Nothing worse than feeling like you have to prove to people that you’re sick. So I just don’t bother trying to explain anymore.” — Susan MacNaughten
"Friends and Family - People that knew you before disaster struck are the worst = ' oh you will be ok ' People that say - 'oh im not very good with illness' - But - want help and support when they are ill" - Annie Flagurty
“I don’t want to sound like I’m whining about my illness, but because I look fine sometimes I wish I had a sign on my forehead letting everyone know I’m not.” — Paige Burgess
“Having an invisible illness is like being an actor in a movie everyone hears about but no one watches. They all have an opinion but their knowledge is lacking.” — Anna A. Legault
For an invisible illness such as depression, you feel like you’re constantly making up excuses as to why you can’t or don’t feel like doing something, for the excuse of ‘I’m depressed’ just isn’t justifiable [to others].” — Katie Stiehl Frauenfelder
“To have an invisible illness and feel invisible is having to explain to everyone what my illnesses are, having to repeatedly spell it for them and correct their spelling because they never spell it right or bother to look it up, being told ‘You look fine,’ ‘You don’t look sick’ and ‘You don’t look disabled’ and feeling invalidated just because they can’t see my illnesses.” — Grace Shockey
“It’s like sitting down to dinner and you’re the only one without a plate. You sit and watch everyone else eat and you are not offered anything.” — Patricia Colbert
"Everybody sees my forced smile and hears my fake ‘I’m OK’ or ‘I’m fine.’ For once, I’d like somebody to say, ‘No, you’re not. What’s going on?’ and genuinely listen.” — Kym Ann
“It feels like you have to justify yourself every time you experience pain or difficulty. I feel like I am not legitimate, that my needs will be viewed through a lens of my ‘label.'” — Kelly Hartigan-Dunn
“People stare right through me, because they’re not sure if I really am sick, like I’m just a dull piece of artwork hanging on the wall.” — Laura Vago
For some, yes. Your illness may be extremely private to you. Or it may be an inconvenience, but not disabling. Maybe you have more good days then bad days or the idea of sharing that you are too tired to go to the store is breaking etiquette rules.
For others, no. We cannot move or breath or have a life without our illness showing its control over our body and brain. It puts us in the position of fighting for everything. I do actually have to fight to survive .....
We fight to have fun, we fight to recover afterwards, we fight to be a parent and then we fight to raise the children, then we fight with the kids - we fight to get up and we fight to go to sleep... we fight to matter - fight to be heard - fight to be listened too — to be something other than a person who is ill.
I hope by you reading - and maybe taking in a bit of this list - will open your eyes to others situations - I am in NO WAY trying to get the sympathy vote - LMAO - I DON'T WANT SYMPATHY !! - I want Understanding and Acknowledgment and ACCEPTANCE that things are different for EVERYONE - What one person takes for granted - another rejects - what one person laughs at - somebody else sneers -
EVERYBODY IS DIFFERENT IN THEIR OWN UNIQUE WAY = I'D LIKE TO THINK THERE IS NO SUCH THING AS DISABILITY - ONLY UNIQUENESS = UNIQABILITY .....
THATS MY NEW WORD - I make alot of those !! ;)
BELIEVE IN THE UNEXPECTED ........... IT GIVES YOU HOPE ......
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