diaryofadisabledperson

Womb of Woes: Part 2.

My second appointment was with a different, younger doctor. Once again I reeled off a list of my symptoms, fully expecting them to be ignored. Therefore, it was something of a surprise when he actually listened to me. When I explained that the inability to have sex, which can be attributed to an entirely separate condition called bilateral dyspareunia, was not what I considered to be a problem, he listened. The focus was shifted onto my other symptoms, & a discussion about diagnosis & treatment was quickly underway, which came to a drastic conclusion. For three months they would use hormones to medically induce the menopause at age 22. If my symptoms stopped, they would undertake a diagnostic laparoscopy, quite literally sticking a camera into my guts to identify the problem.

It took a few weeks to start the treatment as my ordinary doctors were adamant that I was making a fuss over nothing & didn’t need anything quite so invasive (read: expensive). However, I basically annoyed them into submission, & the following three months were the best I had felt since my periods began. The symptoms were eliminated overnight. It was bliss. Even with frequent hot flushes, I was far happier.

All good things must come to an end, & those three heavenly months were soon up. I returned the hospital & saw yet another doctor, this time the head of the department. He was openly disbelieving that anything was wrong, despite the hormones showing such drastic improvements, & tried to dissuade me from undergoing surgery. However, after almost 11 years of fighting to be heard I refused to back down, & my surgery was set to take place at the end of September.

As the surgery approached I became increasingly nervous. You’d have thought that my nerves stemmed from the fear that it would go wrong, or concern for what they would find, but I was actually most afraid of them finding nothing. The leaflets given me all stated, in nicer terms, that if they didn’t find anything via surgery that there was nothing wrong with me, & that I would be discharged. I knew that there was something wrong with me, & had suspected for years that it was endometriosis, but now a definitive answer approached I began to doubt what I knew.

Eventually the day of the surgery arrived. As I was in the ward preparing for the operation, the anaesthetist came to speak to me. With the very briefest of greetings out of the way he immediately asked why I used a wheelchair. I answered, & was immediately asked how I was diagnosed with M.E. I failed to see how this related to the procedure but answered anyway. I was then asked if I did any exercise, & when I answered in the negative I was grilled as to why. He refused to accept that exercising more wouldn’t cure me, & looked down his nose at me in disdain. He added that as a chronic pain patient I could expect to experience more pain than normal upon waking up, but that they would treat that as they saw fit. Clearly, I was just another hypochondriac making a fuss about nothing. Fortunately the head surgeon, who visited me a few minutes later, was much kinder & more sympathetic.

It was approaching 2 pm when I was asked to walk to the operating theatre. They were surprised when I couldn’t just manage the “tiny” stretch of corridor which was at least 150 metres, without any walking aids. However, one of the nurses took the initiative & pushed me there in my wheelchair, saving me from further embarrassment.

The pre-op room was chilly, & as I stood in the thin gown in front of five men & a woman, I suddenly felt very vulnerable. I lay down & was given oxygen via a mask clamped far too tightly onto my face, making it difficult to breath, & a trainee doctor put the cannula in my left hand. He was so nervous about hurting me that he didn’t push the needle in deep enough & it fell back out, so then they had to try again on my right hand. He was mortified but I assured him it was fine; no practice model will ever be able to replace the real thing. As the ceiling tiles started to spin & merge above me, the nurse squeezed my hand.

Womb of Woes: Part 1.

As it transpires, my metamorphosis into a loudmouthed social justice warrior began years prior to the meningitis, with little more blood than a small cut (although to me it felt more akin to the elevator scene in The Shining): my first period.

I was 12, & it was a few days before going on holiday with my parents, when I went to the bathroom & discovered blood in my under-crackers. Despite knowing full well what periods were, curtesy of an ever-important sex education, I totally freaked out…because the bleeding had stopped. My long-suffering mother consoled a crying pre-teen, still sat on the toilet, & explained to me that what I had just experienced was called spotting, & was actually fairly normal. It wasn’t until we were in a remote village in North Yorkshire that my period started properly, but fortunately my mum had packed sanitary towels & spare underwear just in case. That was the first & only period I have ever had that could be described as normal.

According to my sex education, periods were supposed to last 3 – 7 days, occurring in regular 28 – 30 day cycles. I could expect to feel some moderate cramping pains & headaches during menstruation, but over-the-counter painkillers & a hot water bottle should make them manageable. I would feel frail & sensitive, & I might get acne.

My periods lasted nearer 10 days, & could be anywhere between 2 weeks & 2 months apart. The bleeding was heavy enough to overflow a large night-time sanitary towel in a couple of hours. I cannot count the number of times I woke up quite literally in a pool of my own blood, it having overflown my towel & bled through my clothes & the bedding. The pain felt like my uterus was trying to eject itself out from between my legs, & didn’t limit itself to during menstruation either. I would get mid-cycle pain which seemed to coincide with ovulation, pre-period, during-period, & after-period pain. It was easier to count the days when I wasn’t in pain than when I was, & with each cycle it got worse & worse & worse.

Eventually, & by eventually I mean after 4 years, I told my doctor. Apparently, what I was experiencing was just puberty, & by the time I was an adult it would have settled down. He did, however, have the decency to prescribe some additional painkillers which I turned out to be allergic to. I went back & no alternative was offered, but I was offered the contraceptive pill as a means of controlling my cycles, which should improve my symptoms as a knock-on effect.

Even on the pill my uterus stubbornly refused to follow the rules. I must have used just about every single iteration of the pill in existence trying to find one that worked, at one point experiencing 2 three-week-long periods in close succession, leaving me with iron deficiency anaemia as a university student. My problems were, however, still an effect of puberty despite being 20 years old, according to the doctor.

After almost 8 years of this, I was beginning to get frustrated. There was a family history of endometriosis, a disease that appears to have some genetic links, & my development & symptoms matched those typical of endometriosis almost exactly. I had mentioned this to multiple doctors but this was always either ignored or was brushed off as the silly anxieties of a young adult.

However, I did have one new symptom that caught the doctor’s attention; now that I was in a long-term relationship, I was trying to have sex & couldn’t, because it felt like I was ripped apart & burnt at the same time. To me this wasn’t much of an issue – there’s more than one way to skin a cat, if you catch my meaning. However, this was the symptom that medics latched onto. The doctor tried to do a physical examination & couldn’t; it was agony. She told me that I absolutely didn’t have endometriosis, but that my inability to have sex, which didn’t particularly bother me, was enough to warrant a referral to gynaecology. A few months later I attended the gynaecology clinic at the hospital.

I went through my list of symptoms with the consultant, who again disregarded all of the ones causing me trouble in favour of the one that wasn’t. She tried to perform a physical examination &, much like my local doctor, couldn’t. However, for the first time ever my symptom wasn’t attributed to puberty; it was all in my head instead. She prescribed something that can loosely be described as a treatment plan, which unsurprisingly didn’t work, & requested I return to clinic in six months. This being the NHS, it was almost a year before I went back.

Inktober.

According to my CV I’m an educated, experienced woman with an aptitude for the medical sciences & a passion for activism. People have described me as talented, motivated, & determined. Those who know me better would probably say I’m a stubborn workaholic, but that’s beside the point. I have, however, made a choice that clearly negates all my potential attributes; I chose to let someone decorate me with gems & pictures.

I have 4 piercings & 2 tattoos. I have at least 3 more tattoos lined up that will be added to my body over the next few years, & am seriously considering getting another piercing too. Apparently, this makes me ugly, vain, irresponsible, unintelligent, obnoxious, unapproachable, & the spawn of Satan herself. Quite seriously, if people could use a crucifix to banish me, they probably would.

The black & white skull & rose, with 5 red ladybirds crawling over it, on my right shoulder.

The tattoo running from my elbow to my wrist on my right arm that reads Disability Doesn’t Mean I Can’t in neat, black calligraphy.

Admittedly these procedures are expensive & have serious risks, both in terms of how they look afterwards & in relation to health, but there are ways to counteract this. I work & save hard, using my own earnt money to pay for the procedures. I often have a design in mind for months, if not years, & if I still like it after all that time chances are I’ll continue to like it going forwards. I also only use experienced, hygienic artists who have excellent credentials, & I strictly follow the after-care procedures. However, the fact that I will take the chance at all stands against me.

In getting tattoos & piercings I am supporting a local, independent business, something which I have struggled to do due to inaccessibility. I have been called horrendous names for using corporate businesses & chains when steps prevent me entering small businesses, but apparently a tattoo parlour doesn’t count. Yet no one has ever been able to give me an adequate answer when I query why.

The truth of the matter is that, frankly, I get tattoos & piercings to benefit myself. I have long had issues with body confidence as a result of relentless school bullying. Prior to getting my right shoulder tattooed I would feel self-conscious every time I wore a vest, & only had one or two in my wardrobe, because I didn’t like the way they looked. Now that I have a tattoo to detract from any flaws, the only time I stop wearing vests is when it is too cold. Everyone deserves to feel comfortable in their own skin, & for me that meant getting decorated like a humanoid Christmas tree.

For me, getting tattoos is about taking back control (not in the Brexit way) of my own body; for too long it has been at the mercy of chronic illnesses & doctors & will always be that way to some extent, but this means I can have some control over my body again. That’s worth more than a few hundred pounds to me.

At the end of the day, people who have tattoos should be stereotyped as patient – it takes hours even for simple jobs. They are also decisive, creative, & can follow instructions. It takes something special for someone to sit still for hours on end while someone stabs them repeatedly with seven needles.

Tattoos & piercings are not for everyone, & no one should ever feel like they have to get one. However, assigning negative traits to someone just because they have tattoos is equally ridiculous & is as daft as discriminating against someone because they use a wheelchair…oh… There are some amazing people on this planet who you might be ignoring purely based on their looks. Don’t judge a book by it’s cover, & don’t judge a human by their skin (FYI, also applies to racism).

If You’re Happy & You Know It.

No one, not even Twilight-era Kristen Stewart, is completely void of emotion. With mental health & well-being never far from the lime-light, we are encouraged to become comfortable with our emotions, or the positive ones at least. There-in lies one of the biggest problems in healthcare right now; we’re so focussed on being positive that we don’t know how to handle anything negative, & some people take this so far as to condemn any & every negative emotion. When something bad happens, we don’t know how to react.

Take, for example, contracting viral meningitis & through a combination of medical failings & sheer bad luck, becoming disabled. Purely hypothetical, of course. No one, not matter how brave or stoic, is going to feel good about their entire world being turned upside-down, & everything they’ve ever known disintegrating like Thanos snapped it away (come on, it’s been well over a year, I think Infinity War spoilers are the least of our worries). Despite this, I was constantly being told to “think positive”, “look at the bigger picture”, or relish in the fact that I no longer took the simple things for granted.

More recently, I’ve been highly critical of accessibility features that prioritise aesthetics over function, & as a result simply don’t work. There have been a couple of ramps merged into staircases, zig-zagging back & forth across the staircase in tight hairpin bends. There were no railings, the corners were tight, it wasn’t wide enough to allow multiple wheelchairs to use it at the same time, it was miles longer than it needed to be, it was a nightmare for those with visual impairments, & no able-bodied pedestrian is going to stop to let someone disabled past. There was also a sign to display in car windows warning emergency responders that someone disabled was in the vehicle. The characteristics it displayed were so generic & vague as to be thoroughly unhelpful, there was no way of linking it to the disabled individual, & it made cars a target for hate crime. Then there was the stair-climbing wheelchair which was so bad I wrote an entire blog post about it.

In each case it was quite clear that no disabled person had been involved in the design process, which when your target audience is disabled people is kind of a bad business model, & I was backed up by hundreds of other disabled people, & many able-bodied too.

On each occasion I was lambasted for being too negative; I was accused of complaining for the sake of it, & not providing constructive advice. I was told I should be more positive if I wanted to make progress. When I pointed out that stopping harm is as progressive as implementing something good, this was disregarded entirely as an excuse. When I caved in & made suggestions on how to improve them (i.e. scrap the entire thing & start again), I was still too negative.

One particularly bad instance came with a long lecture about how she had terminally ill & disabled relatives, & thus she knew that only a positive attitude could get them through the days. As horrible as it sounds, I would bet good money that when her back was turned, those relatives breathed a sigh of negativity relief.

Being positive all the time is not positive. It actually hinders progress, as without criticism you would never improve something that needs improving. It also causes a lot of mental health issues; one of the biggest triggers for my depression when I first fell ill was the idea that I couldn’t find anything positive in my situation. It made me think that my emotional response of “oh sh*t” was completely wrong.

In particular, mental health is one of the few areas where men are worse off than women. Women are encouraged to be in touch with their emotions, but men are told to “man up”. They’re never taught the appropriate way express emotion because they’re just told to suppress it, & they’re also taught not to seek out help when they need it. Women despair when a simple rejection is taken as the biggest insult, & at least part of the reaction some men have to rejection has to be attributed to this.

Quite simply, the “positivity brigade” does more harm than good. They hinder progress, worsen mental health, & stop people developing appropriate ways to express emotion. The reality of the matter is they simply cannot handle criticism & negativity because they themselves have been victims of the same positivity brigade they now endorse.

Let Me In.

Nothing makes me feel quite as degraded as waiting outside to be let in like a dog. Cats get better treatment than disabled people in this regard, given that wheelchair-flaps aren’t really a thing. If separate entrances for different genders & ethnicities is considered archaic & discriminatory, why does this not apply to disabled people?

I would love to know just how long I have spent outside, often in the cold & wet, waiting while whoever I’m with goes inside to attract the attention of a member of staff, to be directed to the right member of staff, who will then leisurely collect the keys & meander over to the accessible door to let me in. There is never a sense of urgency; other customers who had the luxury of being able to enter the premises of their own accord taking priority, & when the door is finally opened to let me in, I am expected to be beyond grateful for their unwarranted kindness. I’ve even heard members of staff complaining about having to let someone in because it’s such an inconvenience for them. Given the hardship it brings them you’d think someone would have tried to come up with a solution such as making the accessible door the main door, or making the main door accessible. Alas, it is always me to blame for wanting to leave the house every once in a while.

On a few occasions I have challenged the system of making a wheelchair user wait to be let in. Every single time it comes as quite a surprise to the staff that the system is anything less than perfect. To be fair the staff usually report the issue to management, but invariably I get an excuse about budgets, the building being listed, or even something to do with my personal safety. Yes, apparently waiting outside in a dark, dingy alley in the cold, on my own, was for my own safety. Had I not already been, I would have had to sit down in surprise.

By far the most infuriating defences though, are the most the insulting. I am often informed that it actually isn’t ableist to make the disabled person wait outside while everyone who isn’t disabled can go about their business unimpeded, & clearly I, as a disabled person, don’t understand the meaning of ableism.

Similarly, “Well, at least we’re accessible (¯\_(ツ)_/¯)” is commonly encountered. Much like myself, this excuse doesn’t stand up when scrutinised. Chances are, for those living near cities at least, there is a more accessible competitor nearby, & the companies who elect the policy of “disabled people = dogs” are losing out to their competitors.

A system that denies someone the right to their independence purely because they have a protected characteristic, such as disability, is discrimination. A system that forces people to wait outside to be let in when everyone else can go in & out freely, is discrimination. Yet this system is often regarded as a reasonable adjustment, an accessibility feature, & the proprietors have never had any complaints. The only reason they haven’t had any complaints, of course, is because we got bored of waiting & went to someone who will treat us as the human beings we are.

Surgery.

Chances are if you follow me on social media, you already know that I’ve had surgery today. If not, I’ve had surgery today!

A selfie. I'm propped up on pillows in a hospital bed, still in my gown, doing my best to smile at the camera while making the horns symbol. You can see my cannula in the back of my right hand.

The surgery was a diagnostic laparoscopy to uncover the cause of my gynecological symptoms, & after 11 years, I finally know the truth. As I’ve suspected for a long time, I have endometriosis.

In short, this is when the endometrium (what lines the womb in preparation for pregnancy, & falls out during a period) has decided not to be limited by the conventional standards of a uterus, & has gone exploring my abdomen. While normally I would applaud anyone who defies convention, this results in pain & a myriad of other symptoms.

As well as the diagnosis, the surgeons have also removed what they can, so I have 3 new scars to add to the collection.

I’m tired & in a lot of pain, but I’m OK. I’m staying in hospital overnight as M.E. & general anaesthesia do not mix well. Thank you for all the well-wishes & support.

There will absolutely be several blog posts & a vlog documenting all of this, but for now I need to rest. The nurse has just brought me a cup of tea, & then I think I’ll go to sleep, but it takes more than a little surgery to break my spirit.

To Be Or Not To Be (Disabled).

At the time of writing I’m reading the sci-fi dystopia novel Altered Carbon by Richard Morgan. Originally I saw the Netflix adaptation, & enjoyed it so much I couldn’t help picking up the book it was based on. I certainly haven’t been disappointed.

For those unfamiliar with the story, it is set in a future where people can be downloaded onto a USB-drive called a stack, which can be inserted into a new body. This essentially makes people immortal unless the stack is damaged, but unsurprisingly due to the high cost of the procedure, only the higher classes have the privilege of being able to jump from body-to-body multiple times, never having to worry about the Grim Reaper.

While the story is an action-packed thriller involving the “murder” of a rich man who is revived in a clone of his old body, it also raises many unanswerable, philosophical questions about identity, gender, sexuality, crime, & morality. The relationship between the protagonist & one of his associates is somewhat complicated after he inherits the body of her old boyfriend, all the while fighting for his own girlfriend to be revived in a new body too.

One thing that isn’t touched upon in the story, however, is how this system would affect disability. It is understandable that many people would not choose to be revived in a disabled body, but does that mean disabled bodies would simply be tossed aside like trash? If the body you were born in becomes disabled, would you choose to have your stack moved to a functional body?

Quite frankly if I had the option to have myself uploaded into a non-disabled body, I wouldn’t even need to think about it; I would do it in a heartbeat. While using a wheelchair is often complicated & inconvenient, it isn’t this that makes me wish I wasn’t disabled. The sickness itself is the problem for me. There isn’t much I wouldn’t give not to be constantly exhausted, constantly in pain, & often having to fight nausea, dizziness, itching skin & eyes, & the inability to concentrate. Even as I sit writing this my eyelids are sinking & my head feels heavy.

I can’t help but wonder how I would feel if for some reason I couldn’t walk, but was otherwise perfectly healthy. Would I still want to swap bodies? Disability is an integral part of my identity & has given me as much as it has taken, but I still think I’d want to change bodies. If nothing else, fending off the constant questions as to why I hadn’t chosen to change bodies would be reason enough. Besides, given that many businesses manage to make excuses for their inaccessibility now, in a world where disability could be fixed by switching bodies, there wouldn’t be a hope in hell of equality.

Then it boils down to the really tricky question; is it ableist to cast aside disabled bodies like trash? If ableism is defined by prejudice against the disabled, then logically it would seem that this is ableist. Yet I believe that I’m not the only disabled person who would choose to do exactly that, which would make us ableist against ourselves.

At the end of the day this future is highly unlikely to happen, as the number of problems caused by body-switching immortality would probably lead most governments to ban it outright if it ever became a possibility in the first place. It is somewhat useless to debate these questions when they will never arise, especially when we could be putting our time & energy into solving current issues. Still, it is undeniably interesting to think about these questions & how we would choose to answer them