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Raising awareness of a chronic condition isn't going to cure it but it makes life a hell of a lot easier for those who are suffering with it.
To put it in clear terms, "Fibromyalgia" means that our central nervous system is shot to shit. Because there is a dysfunction within the CNS, it can cause up to 200 symptoms, many of them all at once. Imagine having a blind postman—it's like that, all the wrong letters getting delivered to the wrong houses. Wrong and random signals are being sent to random body parts and organs.
I started to have symptoms as young as 15 but was told it was just growing pains and I was just a lazy teenager. I knew it was something more, being so exhausted that I couldn't drag myself out of bed and out of the door to do horse riding, the thing I loved doing the most and it wasn't normal. Neither was not being able to get through half a school day without severe back pain that meant I couldn't concentrate or not being able to write half a page without excruciating pain.
It's not a life limiting condition but it is life changing. Many people have lost their jobs (disability is very difficult to claim for FM in a lot of countries and the ability to hold down a full time job is impossible for many), their families (partners not being able to cope, children resenting parents for a financially and physically limited childhood) and their independence (wheelchairs, dependence on drugs, no longer being able to drive etc).
So if you do come across someone with a chronic illness (FM, MS, CFS, EDS) or god forbid even fall in love with one of us, then here are a few things you should know...
- Don't make us feel like a burden, we already feel like one. If we can't do something or go somewhere it's because we can't, not because we don't want to. Being able to sack off plans you weren't keen on doing is all well and good when you can spend that time doing something you wanted to do, but having to spend it in bed or on the settee up to your eyeballs in pain killers just to alleviate some of the pain isn't what anyone wants to do.
- On the other side of that statement is the fact that when we do get out we make the most of it and are fully prepared to face the consequences because it will be worth it. Doing normal things reminds us we are normal.
- We're sorry when it starts affecting you too. We don't mean to be short tempered or not a lot of fun but being in pain every day knowing it's never going to go away isn't a lot of fun
Since the pain isn't going to go away we learn to live with it. It just takes time and patience to understand how to deal with it, especially after just being diagnosed.
- Sympathy is strange to us. As much as it is appreciated, a little bit of understanding and education is much more appreciated. Trying to explain our condition is complicated because everyone has different severity, triggers and chances are you'll not believe half the symptoms but if you want to help then do a bit of research. We're not asking a 200 page report about it but 5 minutes searching the internet will go a long way.
- There are other side effects apart from pain. Fatigue is a big one and many times I've been called lazy when I know all too well it's more than that. Balance and co-ordination can make you look like a right idiot in social situations; tripping over nothing, dropping things, tripping up stairs before you're drunk, walking into things etc. Sensitivity to light and sounds can cause over stimulation which in turn can cause panic attacks (not ideal when you're in the middle of a club) and even physical pain throughout the body.
- Most of the time going to the doctor's is like going to Jack the Ripper for a hysterectomy—unhelpful and the chances are you'll feel worse than you did before you went. Many doctors still believe chronic pain is all in your head (which is frustrating and upsetting) and the only thing they can do for you is give you slightly stronger tablets that make you look like a zombie. Any further investigation into your condition is avoided because "it's just part of your condition" is used as a get out of jail free card.
- Everyday things can be a challenge; taking a shower for many of us can mean having to sit on the side of the bath for 5 minutes until we get the energy to carry on. Even filling the kettle can make your arms feel like jelly on a bad day. Just because someone can function on a day to day basis it doesn't mean to say the pain has gone or subsided, it just means they've got more strength than yesterday.
- We get good at acting like we're fine. I'm not sure this can actually qualify me to join the RSC but I think I could give them a run for their money. If we complained every time we felt pain or a symptom then no-one would want to be around us for all the negativity, so if we do complain or tell you about the pain its because its more than usual or we need to get it off our chest; we don't want to be Debbie Downers.
- Symptoms aren't just physical, they're also mental. With an extremely sensitive nervous system comes anxiety. Depression comes as a downward spiral either from side-effects of tablets or environmental factors.
- Catching a cold feels like catching your death. We're not exaggerating but our nervous system is. Every ache and pain you feel when you have a cold or flu is amplified because of the sensitivity of the nerves. Telling us "it's just the flu" isn't going to make it go away and chances are if you say that we're going to wish that you would go away.
- My once praised skill of being able drink my father under the table has disappeared. Gone. Sneaked away when I wasn't looking. Alcohol is a stimulant therefore making the nerves work quicker, amplifying the pain and causing you to feel really hot or cold. If we get water or a soft drink don't question it or force alcohol on us. Some of us are on incredibly strong painkillers that could have a fatal reaction if mixed with too much alcohol.
- If over 18 then financially a chronic condition can cost a lot, having to pay out for numerous prescriptions per month (£8 something a pop), plus CBD oil which can cost around £20-40 depending on strength for a tiny bottle, paying to travel somewhere we could easily walk to on a good day, home delivery for shopping, etc. The list could go on but quite honestly my memory's not the greatest. So, if someone does happen to mention they get personal independence payment, please don't automatically think they don't work or depend on this. Many people feel ashamed at the thought of receiving help they actually deserve.