Today’s guest post is from eighteen-year-old Genevieve Davey. Genevieve is my youngest sister, although with the nineteen year age gap between us, we are mistaken for mother and daughter more and more often now (despite the fact that we look nothing alike).
The following piece is the result of a list of thirty prompts published to encourage awareness and discussion of invisible illnesses in society and decrease stigmatisation during Invisible Illness Awareness Week. Gen’s honesty is confronting but impressive and I think this piece also demonstrates that the talent for writing runs in our family.
The Illness I Live With
I suffer from rheumatoid arthritis, clinical depression, severe anxiety, chronic fatigue, gluten intolerance and eating disorders. Tests are also being underway to diagnose problems with my gut, so soon there will be another item to add to the list. As well as these ongoing issues, I was diagnosed with endometriosis last year and had an operation to remove the matter.
I Was Diagnosed In
The arthritis was diagnosed in 2013 by my rheumatologist after many doctors and specialists repeatedly announced that there was nothing wrong with me and that I was simply looking for attention. These announcements, in turn, triggered the symptoms of my mental health disorders. I was diagnosed with clinical depression and severe anxiety in 2012 by my psychiatrist, whom I adore and would not be where I am now without her.
But I Had Symptoms Since
I had always been a shy child to people outside of my comfort zone. However, the severe anxiety found a home in me before I could even talk. Last year, while my mama and I were having a girl’s night out, she told me a story. During the three years that I attended kindergarten (from 2½ to 4 years old), I did not say one word to my fellow peers or my carers and there was controversy as to whether I would be allowed to go to school the next year. I spoke at home; in fact, I never shut up at home, I just could not speak at kinder. On one ordinary day, my mama received a phone call from the crèche saying that they were throwing me a party to celebrate my first words to them, as they hadn’t believed I could talk until then. Naturally, after that day, I spoke so much that they probably regretted making a big deal over my accomplishment.
As for the clinical depression, I first started feeling more agitated and down for no particular reason around the time my sister moved out of the house. I grew up with her and was scared of what would happen without her at home to mediate arguments, talk to in the mornings while she would butter her semi-cooked bread and sip on her cup of tea, or simply to play the Super Nintendo with. After she left, I found it odd that I missed being yelled at for leaving toast crumbs in the margarine. I moved into her old room immediately and sometimes would lay on my bed and try to remember memories of past years, hoping to hear her annoying voice yell out to me, “Butthead!” In no way am I saying that her moving on with her life was the cause of my clinical depression, far from it, but this is the first memory I have of being sad for a prolonged period of time.
The depression sustaining its grasp on my life is a different story entirely, but too complex to state here. I first had symptoms of rheumatoid arthritis in 2009-2010 and I eventually had to have a surgical operation to break both of my legs. Throughout my life, my joints hurt immensely, but my mama put it all down to growing pains until the swelling appeared and, as a sufferer of rheumatoid arthritis herself, she knew all too well what my life would soon bring.
I have suffered from chronic fatigue through all of my high school life, which has not been easy, and it makes my autoimmune diseases at least ten times harder to live with. It is agony sleeping for ten to eleven hours a night and waking up still tired. I developed anorexia and binge eating when the clinical depression was uncontrollable, as they helped me to feel in control of at least one thing. They lasted for about a year, and even now I still have days when I will starve myself in an attempt to take control of my body, with failing leading to bingeing and rampant emotions.
The Biggest Adjustment I’ve Had to Make
Taking a handful of pills every morning, as before I got sick I couldn’t swallow one pill – I am proud of myself for that! Having to do blood tests every month to monitor my progress (yeah, I’m a regular now). This year, I have had to learn how to inject myself with Humira, an anti-crippling drug for the rheumatoid arthritis, every 14 days (look at photos on the web of what this disease can do and then say, “It’s just arthritis!”).
I also have to be wary about going out at night or on exhausting adventures, as I literally drop at a certain time every night. If I am having a flare up, I have had to learn to ask for help for tasks that I would normally do myself, which creates a dent in my pride. Learning ways to take control of my mind and body has been the hardest skill, and still there are days when my mind is in charge and I push everyone away, crying in the corner of my room whilst fantasizing over Tumblr and Pinterest pictures about cutting and pro-ana “thinspiration”.
Due to the severe anxiety, I found it excruciating to talk on the phone, and only in the past couple of years have I been able to – the first barrier I jumped over for this, of course, was calling up and ordering a pizza on my own (and damn, that made it all the more tasty).
I’ve had to cut out most of the gluten in my diet, due to my intolerance for it – this was a really hard task to do, as my love for carbohydrates overrules my stomach’s agony, for the most part. Cleaning up my diet, after growing up on chicken nuggets was a shock for me and served to be emotional, but the rewards I felt, psychologically and physiologically, were shocking. I have also found talking about my feelings to be a huge adjustment. I had never spoken to anyone too deeply about my thoughts and now, as I write this, I couldn’t be happier in the direction I am heading!
Most People Assume
I see strangers stare at me a lot in the street and at school and I still don’t know whether I want to be able to read their minds. I cannot answer this accurately, as no one has told me their first impressions of me, health-wise (feel free to though). But if I saw myself in the street and didn’t know my backstories, I wouldn’t assume very much about that girl as a person. However, her appearance would be judged: “Wow, that girl with those small boobs and chubby thighs has no sense of style – she is wearing tracky pants… in public! Look at her face; she has scars and scabs everywhere – gross! She is limping, huh; someone put her in a nursing home already! Why is she looking around at everyone else in fear? Weirdo!”
The Hardest Part About Mornings Is
Still being tired, after so many hours of sleep. Taking my tablets is a slow process and usually results in nausea and half an hour in the bathroom. The hardest part about the morning is eating breakfast. Mama usually makes me toast (I always leave one slice for my dog, too), otherwise I don’t eat – consuming food in the morning has always been a challenge for me. Although having a shower makes my muscles and joints relax, turning on the taps is a daily struggle. It is the little things that hurt the most.
My Favourite Medical TV Show Is
Grey’s Anatomy, Embarrassing Bodies, Call the Midwife, RPA, etc. I love hearing stories of others and knowing I am not alone in this battle called life.
A Gadget I Couldn’t Live Without Is
Most of these aren’t gadgets; however, they greatly assist me in living with my diseases. A heat pack to press against my muscles and joints, my laptop to look up hilarious cat videos when I am feeling overwhelmed, my pill box to organise the masses of tablets I take, the spa bath to relax in and escape after a long day, the food delivery system for the days when I have no spoons left (look up spoon theory) to cook for myself, and probably many more things that I have forgotten to include. My phone is something that helps me day to day, yet leads to my hands becoming swollen and painful – there are many of these sorts of gadgets that I am yet to decide if they’re a necessity in my life.
The Hardest Part About Nights Is
The oncoming feelings of loneliness and isolation, cramping muscles and oedema in my joints, regrets of eating as much as I had, the thoughts of guilt that control my mind as so many others have it worse than I do. The hardest part is staying awake to enjoy the night.
Each Day I Take
Eight pills, two of which are antidepressants.
Regarding Alternative Treatments
I disagree with most aspects of the health care system; however, when I am in this much pain I need control and closure straight away. My medication is effective, for now, but in the long term I hope to try homeopathy and naturopathy again, with their slow rates of benefit. I am severely allergic to most of the previous medications I have taken, including chemotherapy; however, giving up is not an option while I have so much to give. I used to get acupuncture and cupping done every week, but it got too expensive. I try to get them done at least once every six months now.
If I Had to Choose Between an Invisible Illness or Visible I Would Choose
I suppose this question simulates the “grass is greener on the other side” response. I honestly don’t know and I don’t think I ever will. With an invisible illness, there comes assumptions, judgements, speculations, “but you don’t look sick”, stigmatisation, justifications, and with a visible illness, I can assume, there would be looks of pity from strangers, questions raised by strangers, “help” from people, more knowledge in the community about the types of illnesses, etc.
Regarding Working and Career
No one knows what the future will bring (unless they’re psychic). Frightful prospects regarding work include being able to lift objects, abilities to write and/or type all day, using flights of stairs, being in crowds for extended periods of time, long hours and honestly, so much more. I will not let these diseases take control of how I live my life (for the majority).
In a more positive approach, I have decided that I want to become an ambassador (or some important person) for awareness of these diseases. I hope to raise conversation in communities and talk to fellow sufferers; I hope to change people’s perspectives and attitudes; I hope to make friends with people I would have otherwise never encountered; I hope to change the world!
People Would Be Surprised to Know
I attempted suicide – someone that I adore very much helped me through that tough period. Also, I love singing, dancing and performing (really just being the centre of attention) but the anxiety stopped any chances of that happening, growing up.
The Hardest Thing to Accept About My Reality Has Been
In recovery, putting on weight has been hard for me to deal with – it feels like any minute I will go back to starving myself in order to fall below my goal weight again. It is also hard watching my dog run around, wanting me to take her for walks and go on adventures, and knowing that I cannot and that I don’t know when I will be able to. This parallels with making plans with family and friends. I can make all the plans I want, but I don’t know whether I will actually be able to get out of bed on any given day.
Something I Never Thought I Could Do with My Illness That I Did Was
Pass year twelve – that’s right, I did it! I missed a lot of classes and I yelled at teachers weekly, but I put in the hard work and it paid off accordingly. Am I proud or what? Hell, yes!
Another thing that I thought was an impossible task was, simply, living. I hadn’t dreamt of a future for myself due to not wanting to live in this world, and so when the suicidal thoughts slowly dimmed, I didn’t know what to do with myself. The world was at my feet and I could be anything I wanted! I also never imagined I could be happy. The feelings of depression which engulfed my existence had redesigned my thought patterns and eaten away at any hope of happiness that had previously sparkled through my head. Now the little things make me happy; Nikola’s cheeky smile, Callum’s musical voice, Nikayla’s giggles, the sound of trees in the wind, homemade vegetable pie, romance and passion, mind-changing philosophy, the innocence of children and babies, and cuddles. Don’t ever forget the cuddles.
The Commercials about My Illness
There is not much media attention on arthritis at all. However, mental health and its importance is finally being shown the respect it deserves. Previously, if you were deemed to be mental (that is, mentally ill) it meant you were crazy, with your future likely consisting of a padded cell or a crack house. Today’s understanding of the human body tells us that no blame is to be made, as many aspects of life including genetics, physical environment and random chemical imbalances in the brain impact on the way the body functions.
Something I Really Miss Doing Since I Was Diagnosed Is
I miss dancing. I took formal dance lessons for a couple of months after I was diagnosed in order to show my diagnoses that I was in control. Fat shit that did – I had to quit before the term was up due to the immense pain it caused my joints. Mentally, however, it challenged my overbearing mind and gave it a focal point. I also miss the fitness component of dance, which satisfied my mind in regards to my weight. I am lucky if I even walk anywhere nowadays – a lovely stroll in the park with my boyfriend cost me half a morning of drowsiness and cramps – and that is just walking! As well as that, I miss being independent. I miss not needing to rely on others to help me with stairs or to massage my joints as they flare. I miss being able to stand up for myself without bursting into tears and having the ability to speak in words that others understand when I am not feeling okay. I miss health.
It Was Really Hard to Have to Give Up
I gave up my pride on this journey – I am still unsure as to whether that has heightened or sensitised me as a whole. I felt that my pride was lost as I uncontrollably bled into my boyfriend as he bandaged up my cuts and wounds from my self-harming behaviour. I felt I had lost my pride as I watched a surgeon stick his gloved hands inside me after awakening from an operation and not being able to urinate. I felt that I lost my pride post lying to my mama about my eating – or lack of. I feel that my pride is currently elsewhere as I stare at the zombie-like girl in the mirror, crying at her ugly face and body when others are dying and in need of the basic rights that I acknowledge none of.
A New Hobby I Have Taken Up Since My Diagnosis Is
Movie watching. Before I was seriously ill, the last thing on my mind was watching a movie. I soon learnt that sitting on the couch and doing nothing would become a regular pastime and that I could do little about it, so my boyfriend and I started sharing our favourite movies with each other to fill in the time that we couldn’t be active (some of his being Pulp Fiction, Moulin Rouge, Monty Python and most of Disney and mine including Love Actually, Chocolat and I Am Sam). We usually watch a movie every week now and have created an archive of our ultimate bestest ones.
If I Could Have One Day of Feeling Normal Again I Would
Ah, by now you know I am a lover of the little things in life. I would go for a run, climb a mountain, get impregnated by the love of my life, give my dog a bath, jump on the trampoline, dance, get a job, clean my bathroom, play with my nephews and nieces, get dolled up and feel beautiful, paint like I used to, burn my medical scripts. I honestly don’t know if I would do these; none of us know. I only hope it involves my loved ones and my happiness; those things I have missed the most.
My Illness Has Taught Me
Friendship lasts a lifetime. As depression took over, I pushed my friends away until we didn’t speak for a year. I hurt my best friend greatly and made her feel as though what had happened was her own fault. The illness turned me into an insensitive bitch and only this year did I find out just how my actions, along with other personal matters, had affected her. As I recovered, I realised what I had done and worked overtime to repair our six year friendship – made easier by her incredibly caring nature and unselfish personality. We are, today, back to harassing boys, scoffing down chocolate and making strangers feel uncomfortable. I love you, Nikayla.
Want to Know a Secret?
One thing people say that gets under my skin is, “You can control how you act.” Well, actually, you cannot! When you are depressed, anxious or having a psychotic episode (I have experienced all three) there is no getting through to the host. I remember running to my boyfriend’s house in the middle of the night once, bare feet and in pyjamas, on a mission to take him and run away together – I was having a psychotic attack and was screaming in the street. My mum dragged me home with a tight grasp and we cried for a couple of hours on my bed together. That night was a turning point for her and the first time that I felt she understood what I was going through, mentally.
“It’s just arthritis” is another one – have you looked up the crippled pictures yet? Oh and what about “You’re just doing it for the attention”? There are many more but I am getting angry just typing these, so let’s move on.
But I Love It When People
Hug me! I love snuggles and a listening ear, I love when people ask about the disease instead of assuming from what they have heard about it, when people offer a helping hand and when they know I am having a bad day and they stay with me through hell, lightening the load.
My Favourite Motto, Scripture, Quote That Gets Me Through Tough Times Is
“REMEMBER – I will always be here to kick you in the bum and get you moving in the right direction! Nikola :)” This message is written on a star-shaped sticky note and stuck on the wall above my desk. I read it daily to remind myself of the love and support I am blessed with, and to remember to show my Nuffy just how much I appreciate what he has helped me accomplish through these past three years.
When Someone Is Diagnosed, I’d Like to Tell Them
It is hell, but that’s okay. Simply getting out of bed is a daily accomplishment, but once out of bed and stable enough to keep moving, the day goes on and so do I! It is okay if you want to crawl up in a ball and cry your lungs out; it is okay to cancel plans with your friends because a date with the shower is what you make of the day; it is okay to choose razor blades over boys at this time – I understand your pain and I am here for you.
Something That Has Surprised Me About Living with an Illness Is
Spirituality has shined through me – my mind is more pure than it has ever been before. I can think and philosophise, when I am not in a trance, so deeply and clearly that I feel I can transform the world. My writing is my way of exploring this, for now anyway. I also never knew I could love so passionately.
The Nicest Thing Someone Did for Me When I Wasn’t Feeling Well Was
The nicest thing anyone can do when with a friend that isn’t feeling up to living that day is simply being there. On the numerous times when I haven’t felt okay, my boyfriend and my best friend have been there by my side, sometimes silent and sometimes rowdy and ready to cheer me up, and I couldn’t ask for anything more from them. Just don’t try to fix my problems, Nuffy, and we’re all good!
I’m Involved with Invisible Illness Week Because
Invisible illnesses are going to be a part of my life forever, and like they say, “If you can’t beat ’em, join ’em!”
The Fact That You Read This List Makes Me Feel
Cared for and respected. It is three and a half thousand words of feelings and sop, but I hope it was a worthwhile read and that something was learnt about me, the diseases I endure on a daily basis, or this issue/topic as a whole. Because these illnesses are not invisible, our society is simply blinded.
Invisible Illness Awareness Week 2015 runs from 28 September to 4 October.