Tag Archives: mental illness

Life After SI

May 2016. A month I have a permanent reminder of as I live with the significant events of it day in day out. Marriage was of course the main event. I wear a ring and try not to throttle my husband day to day and do his laundry and all the nice housewifey stuff.

I do it all sometimes with a smile and a singsong, and always with an enormous scar/recurring wound on my arm. Usually bandaged, but occasionally not.

Self-harm. My one and only self-inflicted injury that has warranted an A&E visit. I won’t divulge how I caused the damage, as I am not writing this to encourage anyone to get to the same position I’m now in, 2 years down the bloody line. God, no. All anyone needs to know is that it was not worth it – and THAT is why I am writing this. It’s something I have largely kept to myself because it causes me deep humiliation. I know I was dumb. I know I was stupid. I know I could have caused so much more damage or even risked my life.

I know, I know, I KNOW!

I don’t need to be told it, or for people to glance at my arm then look at me reproachfully. I have to live with it and look at it 24/7 and the humiliation is quite enough for me without adding the shame others feel over it to the mix. I know you are ashamed, because I am overflowing with it myself.

In the moment I caused the injury, I loathed myself. I was not trying to kill myself: I will be very clear on that. I was dealing with a complex, difficult array of emotions over a situation I was not in that point equipped to handle, and that in that moment I could only see release in hurting myself. I wanted to keep it hidden. Unfortunately the damage was unprecedented, and as I said it ended in A&E. But coming back to “the  moment”, and the emotions I was dealing with. I was mortified and humiliated to be me – this was even before I did the deed! – and I was frustrated with my useless fucking body not being able to do the things I could do a few weeks prior. Lupus (and, as I now know, fibromyalgia) is a shitty hand to be dealt. One day you can do it all. Another day you can do fuck all. That alone is a beastly thing to get your noggin around. I was only just learning how to try to walk that path.

Not only that, I was angry. I was angry with my husband. Irrationally so. Christ, he’s lucky not to have to worry about his body failing him, I should be thrilled! But in that moment I was angry that I had been dealt this hand and that he had no idea what it was like to live with a body you cannot fully control or predict. And it was around that time that the tables turned. He came into his own and I totally lost my own. In fact, as I sat in the car hurting myself, he stormed into the final of his first official Ninja Warrior competition. He did his final run and won it after having bandaged me up temporarily, and I had dragged my humiliated face back in to the venue to support him and film his final winning run. Well, it was the least I could do given we would then be heading straight for Leicester A&E. The shame. The selfish, lame, piteousness of it.

The thing is, and it is very complicated for me to comprehend let alone to explain…I wasn’t angry with him or at him. I was angry at myself because I didn’t know how to let go of my own utter failure and embarrassment and hurt in order to support him fully. To this day I struggle because I have the same battles against failure, except they’re even bigger…and his successes are so much bigger too.

How does that cut at the end of May 2016 relate to May 2018? I still have the cut. In A&E they glued and butterfly (sticky) stitched it up and put a plaster on it. We felt back then it needed stitches but the nurse in A&E disagreed…it was late, we weren’t going to argue against him, it was dealt with as it was. Soon became evident I was highly allergic to all kinds of plasters, dressings and tape on my skin. Once the dressing came off it was a fairly neat(ish) line, but it itched – mostly from the allergic reactions from the dressing but also the healing process – and as we have established I have little self-control, and I still hated myself and figured if I opened it up and made the scar worse I truly deserved nothing less. I think with the addition of the 2-3x day baths I was taking the skin softened and dried out in equal measure, increasing the thinness and itchiness, and I essentially kept reopening the wound. It would heal over in time, but I noticed that the scar was changing. It wasn’t a flat line any more. It was a big, lumpy, swollen mess of pinky-purpleness.

In September 2017 I had had enough, I knew it was a health issue that was more important than a continual I-hate-myself-and-I-deserve-this battle, I called up the doctors surgery, booked in with a nurse, and henceforth began twice weekly appointments until the end of December. A tissue viability specialist prescribed a steroid cream in December which, along with the dressings the nurses used (special combinations to minimise the allergy problem), finally closed the wound up. They also confirmed in September and December that unfortunately I had developed keloid scarring; rather than having a nice flat line of a scar around 5 inches long down my arm, I had a miniature mountain range 5 inches along the length of my arm. It happens when the skin basically overgenerates the materials needed for healing. Instead of sending in minimal tools to tie the skin together, it literally piled them on, over and over and over again.

The thing is, the skin on top of keloid scarring is wafer thin. So thin you can see through it. So thin a simple scratch can peel off the entire top layer of skin on my entire scar with no effort. I also have nerve pain in the scar – no doubt a combination of the damage from the initial injury and then the healing complications.

Without protection of a bandage, the scar itched and hurt…and so re-opened…it’s been open again for about a month or so, so I went back to the surgery this afternoon to start again, but this time with a date already booked at the Plastics department in the hospital to hopefully have the keloid scarring removed, and the skin stitched up. And then we hope for no further keloid development.

Was the self-harm worth it? That moment of irrational anger worth a lifetime of a reminder, of humiliation? No, it wasn’t. But, it was all I had in the moment. Self-injury is sometimes a cry for attention. Not the – “hey, look at me!” kind of attention, but the loving kindness, non-judgemental, I’m-really-struggling-here kind of attention. So yes – it was that too for me back then. Self-injury is also a common coping technique when faced with complex or unwanted situations or emotions: sometimes the physical pain is needed to distract the brain, or to release pent up emotion that you don’t otherwise know how to release. It doesn’t “work” per se, of course I would never recommend it…but at the same time, there is a reason self-harmers find that the habit is ingrained deep in their brain and that it often crops up, even decades later, as an urge when the going gets tough.

Case in point: having returned home from my appointment to dress my arm, which in itself was delayed by far too long, I am doubly humiliated, ashamed, and devastated by my self-injurious behaviour. It not only impacts on me but on my loved ones and once again, I treated my beloved husband to a self-destructive wife. Not only did he have to share in the shame of me having to expose my arm and have me explain its history (in as few words as possible – I was almost beyond the ability to speak at this point) but in the half-hour wait in the waiting room, he had to put up with a wife who was pacing, shaking, taking very audible slow and deep sighing breaths, swigging Rescue Remedy more or less from the bottle, crunching an extra Diazepam tablet without water, biting and hitting at myself, and making my ears bleed. Not to mention lurking in the doorway of the surgery looking down at my feet, finger shoved in one ear to dull the sounds of the surgery which were overwhelming me, brain and body, as I couldn’t sit down any longer because I felt so strongly that I needed to leave, NOW.

For me self-harm has always been a culmination and a combination of difficulties.

That injury on my arm right now is a culmination and combination of those and more. The injury told the story of my shame, my embarrassment, my feelings of failure and humiliation and anger. The scar does not remind me of that. It forces me to acutely relive it every day. To hide it even from my husband, because to me, it is an abhorrent sign of my messed up psyche and it is, quite frankly, ugly to look at.

As a general rule, I don’t talk about my self-injury, let alone pick out one incident in particular. But, in order for people to understand something as searingly obvious as what I live with on my arm, sometimes it’s worth speaking up.

Living With Invisible Illness

 Every day there’s a new story showing up on our news feeds about how someone with chronic bowel disease was refused access to toilets while in town or how someone was left a note telling them off for parking in a disabled parking bay when they don’t have a wheelchair.

There is a huge amount of ignorance in society about what illnesses actually “disable” people enough to warrant them disabled access or emergency bathroom.

First of all, there are more illnesses that disable individuals that are hidden, or invisible, than there are visible disabilities. For everyone in a wheelchair, the odds are you could find 5 more people in the same car park who have an illness that disables them physically or mentally on a long-term basis.

Secondly, there is a poor understanding of the ways in which many illnesses affect the individual afflicted by them and how they are classified as a disability. Not only that, but illnesses fluctuate. What might be possible one day might be impossible the next. It is entirely possible that someone may be walking around town unaided on Monday yet needing to be pushed in a wheelchair on Wednesday.

Thirdly, it seems that society doesn’t fully see that what a disabled person shares online might be things they can do maybe only sixty, fifty or even as low as five or ten percent of the time. A day out at the zoo. Training and exercising. Life is as up-and-down for disabled persons as it is for healthy, able-bodied people.

Finally, there is a lack of awareness of the wide variety of reasons disability access is allowed and needed by some people and the situations in which such concessions need to be made.

I can’t address every problem, every illness, every possible situation. What I can do is try to explain life with an invisible illness and why society as a whole should never judge based on what they witness at any single point in time.

I will use myself as an example. I am on the lupus spectrum, meaning I have many of the symptoms of lupus but not all. Put simply, based on history, tests, scans and symptoms it’s more likely to be lupus than other rheumatic diseases. Inflammatory arthritis is involved. I also have fibromyalgia. My symptoms include extreme sensitivity to heat and cold, a sensitive digestive system, irritable bowels, chronic fatigue, exhaustion and lethargy, a fluctuating appetite, swollen joints, joint pain, muscle pain, nerve pain, constant headaches, fevers, brain fog (includes problems with focus, memory loss, concentration difficulties, forgetfulness, frustration, irritability) and severe physical pain – I’ve needed an ambulance on two occasions in the past year, needed to be lifted out of bed and dressed by my husband, and I’ve tried a dozen different medications which all come with a long list of potential additional problems in the form of side-effects.

On a really bad day, I can be seen visually as being disabled. I might need crutches or a wheelchair. I might need to stay with my husband or mother at all times. But for the most part my disease is under much better control now, so I’m able to drive myself, to walk around town, to do two hours of yoga, take days out…I can physically do much of what I want to do. But here’s the thing: if I don’t pace myself i.e. limit and take great care over the way I expend my energy, I’ll be so fatigued I’ll just sleep for the next 3 days, and I could be in enough pain to need morphine.

A huge number of illnesses act in very much the same way. They fluctuate. Sometimes the invisibly-ill will be on a really great run, doing very well, but what you on the street don’t see is that it’s as a result of many appointments with NHS specialists, a dozen medications, a therapist, weekly check-ins with our GP. All of this comes at a huge cost to the NHS. The more we aggravate our condition the more we need those services, the more time we will have to take up from our overworked and in-demand NHS staff and the more drugs we will need, using up time, resources and NHS funds.

Sometimes what aggravates an invisible illness is walking longer distances. Having to stand at crossings to get where we need to. Having to carry heavy shopping bags further back to our car. Sometimes even if we look and act okay it’s already been at a huge expense and the use of a disabled parking bay prevents us needing to use up still more of the NHS’ valuable time and money. Perhaps if we don’t use it, we will gradually or maybe suddenly get a lot worse and be completely unable to work, or to be the mother/father, wife/husband, friend and member of society we want to be.

Not all disabilities are physical, either. Mental illness is a disability. This is a difficult concept for anyone who hasn’t struggled with a runaway mind or a chemical-imbalance of the brain to understand. My experience has proven mental illness can not only be debilitating and life-limiting, but life-threatening. An illness of the mind isn’t something that can be shaken off; it can’t be taken away by popping a pill or saying to yourself “get a grip!”; there are no fast or instant fixes, and many symptoms manifest within the body in addition to the psychological aspect. I’m now 28 but have suffered severe anxiety, agoraphobia and emetophobia since the age of 7. In the twenty-one years I’ve suffered I’ve had three nervous breakdowns (now known as being “in crisis”), and I’ve also developed panic disorder, depression, mood disorder, suicidal ideation and turned to self-injury as a coping mechanism. I’ve had more private therapy than I have had therapy on the NHS, but I take medication, again prescribed by the NHS.

Mental illness fluctuates just like a physical disease. Mental illness can cause a vast array of physical symptoms: overwhelming fatigue, lethargy, apathy, brain fog, nausea, diarrhoea, trembling, weakness, sweating, hot flushes to name but a few. It might mean that we need to park our car closer to the shops to limit the amount of time we spend in town. It might mean we need to carry a disabled-access card so that we can use more toilets than the rest of the public because our anxiety has turned our bowels to liquid. It might mean we avoid certain things for certain reasons.

Most people think the only purpose of disabled parking and disabled toilets is to allow room for a wheelchair.

The reality is that there is a great deal more to disability than physical body impairment and missing limbs.

It is possible to be in too much pain to walk, but the next day be on the yoga mat in Downward-Facing Dog.

It is possible to be carrying a toilet-access card but to go on a walking holiday.

It is possible to take a flight, a train and a coach, but to not be able to drive yourself.

It is possible to walk up and down a mountain one day, but be unable to step outside our very own front door twenty-four hours later.

It’s possible to be able to eat a three course meal at home, but to be unable to eat anything out, even if it means going the entire day without food, making us very weak.

We might look fine. Some days we might feel pretty good. But our “pretty good” is your “pretty rough” day. We don’t have the “feeling perfect” days many of you do. The best we can hope for is to manage our conditions. Sometimes all we want is to be free from pain, to have some energy, or to just act normal for one damn day. If that means that using a disabled bay, having access to disabled toilets, or if other concessions need to be made – then so be it. We shouldn’t have to feel guilty about that. We shouldn’t be made to feel guilty for a disease we didn’t ask for. We shouldn’t be made to feel that we can’t share our achievements just because we need to make some things in life a little easier on us. We have every bit as much right to shop without being in pain, to walk around town without being afraid we can’t reach a toilet, to hit the zoo with our family without being too petrified to go because the only parking space might be a five minute walk away!

I have multiple disabilities. But I do yoga. I do advanced yoga as I’ve practiced it for 5 years now and it helps my mind and body. I do whatever my body is capable of doing in the moment without causing it any extra pain. It usually relieves pain, if anything. And yet the sad thing is that my old employer, who I thought understood my different conditions, blamed my yoga for my lupus and my wheelchair for my arthritis. She suggested that doing the splits is what causes my joints to seize and why I’m in so much pain and she got fed up of the reasons I would come back to her with for why I didn’t work at a certain time (even though I always more than made up for anything, and we never – not once – missed a deadline). Needless to say, I no longer work for her, and it is this kind of ignorance that makes it so difficult for so many others with hidden illnesses to cope with day to day life. My old employer had intimate accounts about all my illnesses yet I was still treated with deep ignorance and disrespect.

Put yourself in someone else’s shoes:

Imagine how hard it is for you, as someone suffering in silence, dealing with chronic pain or mental illness or any other invisible disease, to go out in public, to go to work, to run a family and a home.

Imagine if you could do all of that but you are given a few tiny miracles; things were made just a little easier for you as you are granted special access to toilets or able to park in a disabled bay so you don’t have to walk as far to your doctor or to the shops.

Then imagine being handed a note when you come out of the toilet saying you’re a disgusting human being for blocking a disabled toilet when you should just wait in line like everyone else, or you arrive back at your car to a note on your windscreen saying you’re a piece of scum, that you are blocking a space that is needed by someone who actually has a disability. Or you’re approached in the park while you’re doing yoga to be told, “Oh I saw you! You’re not disabled, look at you! Get your car out of the disabled bay because you clearly don’t need it.”

Life is hard enough with invisible illness. It actually helps us to still feel needed, to still feel that we have a place in our community and a job to do and a family who needs us. Sometimes we need help to do those things though. Whether it’s easier access between our car and our destination, ready access to toilets, special requests on where to be sat in a meeting…whatever makes us able to function and serve just like everyone else. We don’t like to bring our illnesses to attention. We’d rather hide them away and pretend we don’t have them because we know we’ll be treated differently, usually in a negative way…but because of such attitudes, people like me (who have years of advocacy, media work and blogging about illness to raise awareness) have to lay ourselves out and sacrifice our own energy to try to get the world to understand. The thing is, the world so often doesn’t want to understand. It’s easier for people to judge and not question their judgement.

When society makes things harder for us by passing judgement on something or someone they know absolutely nothing about, they make it so much more likely that those people who secretly fight so hard to serve and work and simply survive, will just want to give up.

By accusing the invisibly ill of faking it and of being a waste of space or pathetic and lazy excuse of a human being, you might just lose one of the key members of your community. All over an assumption that because someone has all their limbs and can move them, they are in perfect health.

If you really have to say something and you can’t hold your tongue, my advice is this: offer to help. Don’t ask. Don’t judge. Don’t assume. A little compassion goes a long way. The odds are you’ll learn something about the true nature of disability that you wouldn’t have known before.