We can speak louder than ignorance…

We are living in a, frankly, terrifying world. The march to the political right, climate chaos, human rights violations, erosion of reproductive rights are just the tip of the nightmare. It is easy to feel powerless in the face of such monumental issues.

I feel especially frustrated when my health limits my participation in protest. Signing petitions, sending emails & sharing information doesn’t feel like enough. In an effort to feel like I am trying to facilitate change I put my money where my mouth is.

For a few years now I have tried to pick a different charity or organisation each month to donate to. It’s not always a huge donation, but I think every little helps. It also really helps me deal with life to feel that I am supporting action that betters the world.

It occurred to me that I often discover people doing amazing work via social media, friends raising money and the content I consume. Thus I have decided to share the groups I am supporting each month in the hope that others might also feel moved to donate.

Immigration policy on both sides of the Atlantic are alarming. The American situation is beyond compression. Facist dehumanising techniques are in full force & repugnant acts are being committed. Raices are on the ground in Texas fighting for asylum at the border. They support those who have been detained, try to reunite separated families & advocate for unaccompanied minors. This work is vital. We can do nothing whilst sickening acts are waged against desperate people seeking safety. If you can, please consider making a donation.

Mental Health Platitude Week…

It’s National Mental Health Awareness Week again. Regular readers will probably have spotted how I feel about this sham, but for the avoidance of doubt I’m going to go at it once more. I ask you to forgive my lack of finesse. I’m riddled with infections, haven’t slept & more than a little frustrated with the subject matter.

Some of you may be thinking, wait, raising awareness about mental health is great. You are of course correct, but this week (& most mainstream MH campaigns) is just lip service. At best it’s platitudes & at worst it’s dangerous. If you check the hashtag on social media you’re going to see a lot of posts extolling the virtue of talking about your troubles. Talk will apparently cure all that ailes you. Ask for help & you shall receive. Pro Tip, It won’t & you won’t. 

On the help front you’ll be up against the limitations of the NHS. Cuts to mental health services have been particularly brutal. Even if you have the good luck to access a Gp who takes you seriously & correctly refers you in a prompt manner, your wait will be long. What’s worse is that the correct help is unlikely to be at the end of your wait. A shocking lack in resources of every kind results in most people being offered short courses of cheap therapies like CBT. It will come as no surprise that with mental illness one size does not fit all.

 Even in acute circumstances there are no psychiatric beds available. Many people have to travel long distances to access inpatient psychiatric care. Meaning they are far from family, friends & comforts in their darkest moments. If you’re a child or adolescent those resources only get scarcer. So, that’s frightened children waiting in misery to access services that may be of no use to them anyway. All of which is a far cry from just talk & salvation awaits. 

As depressing as all that is I haven’t even broached the fact some people never get as far as a waiting list. For many there is no sympathetic ear. Their gigantic leap of faith is met with ignorance. Employers do still discriminate against the disabled. There are still Dr’s who will tell a person to pull themselves together. The worst stigma I ever faced was from medical professionals. All of which means awareness is great, but money is better. Proper funding is the answer to our mental health crisis & it is that is what we should be talking about. 


The money problem doesn’t end with NHS funding. Our government is trying to eradicate disability benefits for mental illness entirely. The process of applying for PIP or ESA is exhaustive. The categories for qualifying are constantly shrinking. Our benefits system currently subjects vulnerable & very sick individuals to the most humiliating process in order to survive. That mental illnesses are purposely targeted for exclusion is government sanctioned stigma. Ah, I hear you cry, we do need awareness.  Well here’s the thing, we don’t need the bullshit being touted by the mainstream orgs. All those articles about exercise & healthy eating & a hot baths & nice cups of tea are just shoring up that stigma. The idea that mental illness can be cured by any of those things minimises it’s very nature. It encourages the notion that people with long term mental health problems just aren’t trying hard enough. That in turn legitimises the governments disgusting witch hunt. 

And we’re right back to my original point. Awareness is fine, but real change is the key. If you truly want to make a difference you need to tell your elected representatives that mental illness is a key issue for you. Sign petitions, attend marches, get informed. Read the difficult articles. By all means challenge stigma when it crosses your path & listen to anyone who chooses you as a confident. Do all of those of things, but I want to be clear, there is one crucial thing that will hand more impact than anything else, DO NOT VOTE TORY. 

Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world.