This article is dedicated to my incredible partner who inspired me to be more honest about how I’m doing regardless of others opinions or problems. It was 5 years on 07/10/16, and you continue to be my rock. Kocham Cie.
I get told a lot that I focus too much or I define myself too much with my illnesses.
Despite my gallows humour and frequent attempts at comedy, apparently I am too negative about how literally my entire life has been affected by illness.
I should say, I have borderline personality disorder (BPD), hypermobility syndrome, irritable bowel syndrome (IBS), extreme allergies to dust, pollen, fur, hair, my own sweat and most body products, hyperhydrosis (I’m a sweaty mess 99% of the time) dermatillomania, severe eczema, tendencies towards obsessive compulsive personality disorder (OCPD), anaemia and a pretty much nonexistent immune system.
It’s like a laundry list, it takes me 10 minutes at the doctors just to list them thanks to the helpful symptom of memory loss.
Don’t get me wrong, there will always be someone who has it much worse than I do. I’m incredibly lucky to have an amazing support network of friends and family, as well as a long term relationship with an incredibly caring and patient partner.
I don’t have severe money concerns, I’m privileged to be able to travel frequently and I’ve gone almost a year without self-harming or attempting suicide. My recovery is going well and I have a lot going for me, regardless of my habit to sound egotistical due to my blunt nature.
However, I still have a lot of negativity. My hypermobility has caused my mobility to decline, I had to bite the proverbial bullet and buy a wheelchair so I could actually leave the house more than once a week.
At the rate I’m going and as it’s early onset, my prospects for future mobility are pretty grim.
Having to accept that means I’m experiencing a mild (for me) depressive period and I’m more emotional and irrational because of the insane amount of pain I’m in despite painkillers, and I can’t even explain the pain and frustration when my medication gets messed up.
Then, more of the BPD comes in. Alongside the depression, I tend to get a bit lax in my personal hygiene. Combine that with hyperhydrosis and eczema, and I basically become a stinky human scab. The nature of being a scab also makes my dermatillomania flare up and then I evolve to become a stinky, bloody human scab.
This then affects my self esteem and I refuse to be seen by anyone other than my partner, and I cry on him. A lot. So I won’t go and get real food or eat because I feel physically sick with myself, so I eat comfort food and then make myself literally sick because something irritated my bowels.
I could moan all day about all the crappy things I go through just to live, but I don’t very often. When I do, more often than not it’s tinged with sarcasm and my blunt humour because that’s my coping mechanism because I’m completely obsessed with every thing Robin Williams has ever done or said.
I use the BPD symptoms of discomfort with intimacy and social interaction to fuel my humour that my friends love me for. I’m extremely empathetic because of BPD and I use that to be a better partner, daughter, sister, auntie, friend, etc.
BPD sufferers get a bad reputation as manipulators, and I can’t deny there aren’t people with BPD who are emotionally, sometimes physically, abusive. I’ve met them, and I wore myself out trying to help ‘fix’ them to no success.
I have a saviour complex and a protective nature, and it was a hard lesson to learn that my well-being is important too.
Their symptoms and life experiences affected them in a destructive way, I refuse to condone that behaviour but I can’t help but sympathise because that could have been me. My symptoms caused problems and I became a huge tool, but my life experiences (my mum was also an influence, she takes no crap from me) influenced me to reflect on my horrid behaviour and effect a positive change and take responsibility for my actions regardless of illness.
My host of problems have affected me in more ways than I can even count, I can count the days I’ve felt healthy and normal on one hand. Helpful because I have zero concentration when it comes to maths. I was bullied for being odd from the day I started school to the day I quit university. I had to give up athletics and cross country because my joints kept dislocating and I was in agony, as well as perpetually exhausted. I look at my gold medals, cross country trophies, my house captain and sports captain pins and I feel such loss for my once loved hobby. I feel loss when I look at childhood pictures and barely recognise the confident and happy child who, whilst dramatic, never let illness hold her back.
Nobody warned me that I would grieve for a life path I could not take. In all honesty, I don’t know who I am without illness. I’ve been ill since the day I was born, and I’ll be ill for the remainder of my life. Unless they suddenly invent miracles cures for my book of problems like that chamber in Avengers.
It’s been the bane of my life, but at the same time I wouldn’t change it for the world. I was able to raise over £200 for Cancer Research and completed the Pretty Muddy 5k in under an hour, thanks to one of my best friends who stayed with me the whole way. I’m also a better person because of my health problems, I have a compassionate and caring nature because I know how it feels to have your world crash around you and to be in so much pain you think you’re dying.
I know how important it is to just be heard and have your feelings validated. There’s things I don’t know, things I can’t imagine because they haven’t happened to me. I listen and I learn as much as I can so I know how to effectively help someone.
My illnesses define me, I am who I am because of the path my life has gone. I’m all the positives of my life, but I’m also the negatives. I advocate and I work hard for recovery, but I also do nothing and complain dramatically on a bad day. I am my illnesses. And that’s not a bad thing.
Words by Rachael Elizabeth