To my fellow invisible sufferers of ME/CFS and Fibromyalgia, there is always pain but there is also always hope.
I wish I could say everything was fine but you know that is a lie. We all have our own stories, some far sadder than others, but all with that common bond – we constantly suffer excruciating pain and exhaustion but we look healthy.
Now I am not saying I would rather look ill, I’m not that good looking to start with! Perhaps something simple that others could see and recognise, and no I do not want that sign to be my wheelchair.
A sign, yes that might work! Maybe something small and tasteful, a neon sign above my head with a pain meter flashing brightly. I think red would be a nice colour. Oh, and in bold…and maybe underlined as well.
Seriously though, how do we get through this incredibly debilitating illness that can last anything from five to fifty years, when everyone we meet tells us we look fine and wonders what we are on about. Sick? Hey you didn’t see me last week, I had the flu so badly!
Every one of us would gladly swap our condition for the flu any day! Even if we were told that the flu would last a year I am certain we would all sign up!
There is a serious disconnect between how we look and how we feel, and it is wider than the Grand Canyon. It is also impossible to explain to people in a dozen words or less, which is the average attention span these days after they have said; “Hi. How are you?”.
It would make our lives so much easier if we could tell people what we are going through in a nice, short, simple sentence. A sentence that would achieve complete and immediate understanding.
“I have ME/CFS and Fibromyalgia. Never heard of it? Well I feel exhausted all the time..” That is about as far we get sometimes before they jump in and say something like; “Tired? Mate I’m tired all the time! I work fifty hours a week, have to look after the kids and I don’t get to sleep in on weekends because I have to take my oldest to their footy game.” And the attention is now on them, not you, and you feel like you now have to justify how you feel, convince him your illness is real and terrible and awful and some days you feel like you are dying and your partner left you because they couldn’t cope and didn’t believe you were actually ill because you look so well….
Take a breath. Breeeeeathe.
Now ask yourself a simple question. Apart from doctors and Centrelink, do you actually have to justify how you feel to anyone? Is it critical that people know exactly what you are going through? It would certainly make your life more bearable but since it is so crappy now, will it make that much difference if he/she knew the intimate details of your chronic illness?
Obviously with close family and friends the answer is a resounding yes, but they will (should!) give you time to explain exactly what you are going through. It also lets you know who really cares, because the ones that care actually listen, ask questions and try to understand. The ones that don’t you are better off without, as excruciatingly painful it might be at the time.
Time might not heal all wounds, but it does dull the pain. So hang in there, it does get better!
So what do we tell people, to make it easier for them to understand? Yes they should allow you the courtesy of listening and trying to comprehend it all, but we also have a duty to make it as easy for them to understand as we can.
To put it flippantly, and to improve the mood of this article by giving us all hope for a more sympathetic tomorrow – we need a catchphrase.
“I have………?” What can we say that covers a dozen symptoms (or more) for an illness that many people (including the medical profession and, of course, good old Centrelink) do not believe exists?
Correction. We need a label, not a catchphrase. People love labels. It makes everything easy, fast and quickly understood. They have busy lives you know (as they will tell you at the first opportunity, alluding to what you said about spending 90% of your life in bed). The most important aspect is that it needs to be quickly understood so we do not spend unnecessary energy trying to explain everything.
Now if you think that I am about to tell you what that wonderful, easy, stress-reducing label is, I apologise because I have no idea.
But maybe, together, we can achieve this? Think of all the times you have tried to explain to someone how you are feeling, then think about how wonderfully easy it would be to tell them in eight words. They sympathise or grunt and you move on. No more asking yourself; “Where do I start? Do I say I’m bedbound for almost my entire life, will they believe me or laugh and say they wished they could just lie in bed all day? Do I have the energy to try to explain everything to this person? Is it worth it because it will be exhausting and I need every drop of energy just to exist? Do I just say that I’m fine and move on? Do I owe it to fellow sufferers to make the effort and explain it all so one more person understands? Do I push on and try to spread the message about this largely unknown illness? If they don’t believe me will it crush me and take a week or two to recover?
In my case I ask myself if I have the energy to answer with – “Actually I had to stop working in April last year due to my chronic illness. We lost our dream home which was devastating and incredibly stressful, but we were lucky to find a beautiful home we downsized into a bit further out from the city. I can’t plan my days because I don’t know when my next crash will be, so you’ve caught me at a good time. I’m actually out of the house! I’m bedbound for about 90% of my life so these outings are very special to me. I take incredibly strong painkillers that I have to be careful to not get addicted to, but if I don’t take them I’m quickly in as much pain as a cancer patient in the last three months of their lives. It is documented, studies have been done. I regularly have a blood test to keep an eye on my liver and other stuff, and see my GP every month. Last week I had a migraine for three days and I really don’t know how I got through it, hardly slept. Just two mornings ago I woke up in horrific pain all over my body, I have no idea why but I changed my medications a bit and the pain has reduced, touch wood. Now I go to bed at night really scared that I’ll wake up in that same pain, the worst pain I have ever experienced. The dizziness is crazy. I walk around at home – when I’m out of bed that is, I can only do 500 steps per day or I have several bad days afterwards – and even with my walking stick I keep crashing into things. My skin is incredibly sensitive and sometimes when I put clothes on or just turn over in bed it feels like someone is peeling my skin off with a very sharp knife. I really cannot do more than one outing a week, or two very short ones, as I crash badly. It is nice to get out and feel human, but I have to be careful because my senses are so fragile that if there is noise and people talking loudly around me it also triggers a crash. I’m trying to keep positive, luckily my partner is very supportive, you wouldn’t believe what some incredibly thoughtless and horrible things some other partners do. Some leave their spouse because they don’t believe we’re ill or just can’t cope with having to do everything around the house. I feel so sorry for them because the illness itself is horrible enough without your personal life imploding as well. Anyway as I said I’m trying to stay positive, so I’m writing a blog to support other people with the same chronic illness, by letting them know they are not alone. I write some other stuff as well, mostly at night because I often can’t get to sleep even though I am completely exhausted. Have you seen a marathon runner at the finish line? I feel like that if I just walk down my street. I’m also reading a bit, in between the dizziness, to try to keep my brain going. I never thought I’d say this but I really miss working, you’re very lucky, so next time you have a bad day think of me because I’d trade with you in a microsecond! They haven’t found a cause or cure yet. I’m still waiting for Centrelink to approve my application for the Disability Support Pension, it has been in their system for over a year and it’s an incredibly stressful process, exactly what I don’t need. It’s the Federal Government trying to save money and most people with my illness get refused and have to appeal. For some stupid reason the assessors at Centrelink believe they know better than four doctors! Absolute disgrace especially in our country, no compassion for people like me at all. And how are you?”
Yes, I think we need a label.