Why I Talk About My Illness

This is actually a post made over on my Tumblr blog a week or so ago, but it had such a popular response I thought I'd put it in here too. It sums up what the message of this blog truly is and how I feel about the problems facing those who are ill. I hope it strikes the same chord here as it appears to have done over on Tumblr:

There’s a community online that a lot of people are unaware of, or willfully distance themselves from. We have a myriad of different problems but all identify together regardless. We’re the Spoonies – or for those unaware of The Spoon Theory and all it represents, we’re the chronically ill.

Chronic illness comes in all different shapes and sizes as with all aspects of life. You’ll no doubt have heard of some and possibly not others. The list to many of the spoonies is as familiar as the back of our own heat-therapied hands: Crohn’s Disease, Ulcerative Colitis, Fibromyalgia, Lupus (SLE), Ehlers Danlos Syndrome, Eczema and associated skin problems, Chronic Fatigue Syndrome, Interstitial Cystitis, ME..... All are different and yet they remain united by one crucial thing – the profound effect they have on the sufferer’s life.

I’m not writing this to talk about how much chronic conditions suck and I’m not here to moan.  I’m here to offer a perspective on why we talk about our problems as openly as we do, as it inevitably rubs plenty of people up the wrong way. I’m British, and we’re culturally supposed to maintain a stiff upper lip and not discuss anything problematic.

No matter how elegantly constructed and well-meaning the words, we always face the possibility of being accused of attention seeking, of begging for sympathy, of complaining too much. I would take an educated guess that not one person in the wider circles of those I interact with has yet to have this levelled at them. It’s usually thrown about by those who don’t suffer themselves, or possibly by those who know a sufferer who deals with their condition differently.

Of course everyone has a right to their own opinion, and good luck to them. However, that doesn’t bestow the right to try to police how others deal with what is a very personal and individual problem. The key here is in that individuality: some people deal with a problem by bottling everything up and never speaking out; others have to have a good moan to vent their frustrations. Neither approach is right or wrong on general scale: as long as it works for the person and they’re not hurting anyone else, that should be good enough.

One thing I have noticed however is that these individuals who are affronted by openness never ask the opinion of the ill person. They never ask them to explain their approach or why they feel it is the right one for them – they merely assume their own feelings to be of paramount importance and no alternative view to be of consequence.

So I’m writing today to give the other side of the coin.

Firstly, I have Fibromyalgia and Interstitial Cystitis. Interstitial Cystitis constitutes permanent inflammation of the bladder wall (I’d compare it to having the permanent feeling of having a water infection). I’m very lucky in that my IC is quite mild and controlled easily by medication. Aside from the odd painful and inconvenient flare up, I get by pretty much without incident. My main problem is the Fibromyalgia.

Fibromyalgia is a bit of a mystery to doctors. They don’t know why it happens or what causes it – they’re not even entirely sure how to categorise it. The prevailing thinking at present is that it has some elements of an autoimmune condition (tests confirm most suffers have abnormalities in their levels of substance P, a component of the immune system) and is also characterised by a profound effect on the nervous system and the way it and the brain interpret pain signals. This leads to the phenomenon of central sensitisation – an effective re-wiring of the nervous system so that even the slightest touch can cause pain and tenderness. Most sufferers find themselves to always be in a certain level of pain, with muscles and joints (or the fibrous tissue surrounding them) feeling constantly overworked even when they have done very little. Fibromyalgia also effects tiredness levels (sufferers lack enough REM sleep in their sleep pattern) and causess sensitivities to every day foods, sounds and smells, affects the function of the bowel and bladder and can also cause cognitive dysfunction and memory loss often known as “Fibro Fog”.

I say this only to illustrate that I am a person who understands – how can you not, when you go through the same thing 24/7?

We don’t talk on blogs about our conditions because we’re seeking attention. We do it to share experiences with the wider online Spoony community, who are one of the most tangible sources of support and guidance available to us. It is sadly true that in a lot of cases sufferers know more than the doctors who treat them about their bodies and what they need. Suggestions and tips come nine times out of ten from other Spoonies as a result. We also offer our own experiences so that other sufferers know they are not alone, and that a person is listening and understands. When you can’t leave the house and have the social life you had when you were healthy, the internet can be an important source of comfort. Loneliness and feelings of guilt and lack of worth are frighteningly common amongst those with incurable conditons – would you want to feel alone and ignored if that was how you felt day after day? It sounds like nothing, but a reply on a blog stating “I understand” can mean the world to another person.

We don’t update Facebook because we’re begging for sympathy. We do it to keep friends and family in the loop, to have the occasional ten second vent and to raise awareness. A lot of the conditions mentioned are "invisible illnesses". This does not mean as some people assume that they are made up and are actually non-existent because they cannot be seen - that's why they're called invisible, after all. One of the biggest problems faced by those who are ill in the wider population is the lack of understanding and the wealth of misconception perpetuated by those who do a quick Google search or skim read a Wikipedia article and assume there is no more to know than what they find there.

Eczema isn’t always just itchy skin when you’re a child. Fibromyalgia isn’t being a bit sleepy. Crohn’s Disease and other inflammatory bowel diseases aren’t just bouts of diarrhoea. Depression and anxiety aren’t just new “trendy” conditions to mask being a bit low.  Lupus isn’t just a joke on House.

A friend of mine is running 1000km in 2013 to raise awareness about eczema and to raise money for the National Eczema Society. He’s doing this because his partner suffers horribly with it and associated  skin conditions which have a profound effect on her life, and yet the standard response to a mere mention of this is either dismissal or “try E45.” (For the record, I don’t recommend E45 to anyone – it’s full of lanolin and that’s not a good idea for a lot of people with sensitive or irritable skin.)

For anyone who may be interested, his link is here: http://1000kmchallenge.tumblr.com/

And lastly, we don’t post merely to complain. Sure, we all complain occasionally which I don’t think is unrealistic or indeed unexpected – but why is it that when someone who suffers with a chronic illness posts, the instant go-to is “shut up attention seeking”? I’m sure we all have friends or acquaintances who post repeatedly about headaches and colds – why then is this different?

Personally I try to poke fun and laugh at my conditions – it’s part of my coping mechanism and often it makes other people laugh too, which is always nice. My own personal inner demon has a silly name granted by a friend which has stuck. The existence and popularity of blogs like ChronicIllnessCat prove that this is the method of choice for others too. Laughter sometimes is one of the best forms of medicine.

And remember that lastly if you don’t want to read someone’s posts about their illness, all websites have a hide or block function which you are free to utilise at your own discretion. However, if you took ten seconds to just re-read and think about what the person is going through and think about the varying reasons they could be making those posts, possibly you’ll find that you don’t really need it after all.