Tag Archives: fibromyalgia

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.