It’s (Almost) Monday ! ~ Fighting Invisible Battles
Hello, my name is Ylthin and I suffer what is called invisible illness. It means that while I usually look fine on the outside, smiling, joking as every other person, I suffer several chronic illnesses that causes me to be on constant pain and to deal with several side effects requiring me to live each day as they come.
This is why my Monday topic happens only today, I didn’t have enough spoons yesterday to write and the heat managed to kill my last “focus” brain cell, making me look at the white page for fifteen minutes without a proper sentence coming out.
Frustrating I tell you. But this is what being me is since four years now and while it’s still hard for me to fully accept it, I came to learn how to adapt to it.
What is an invisible illness, or an invisible handicap.
People view on handicap is generally always the same, someone who has something showing on their outside that they lack of the ability to do what a healthy human being can do. The most classic example is someone using a wheel chair, it’s clear at this point that this person has a handicap and nobody will question it.
Unfortunately, most of people suffer of invisible handicap, would it be mental, physical or both, and while those affect those people’s life, someone unaware of their test result may doubt or question said handicap. Especially when you request a privilege such as being first on the line or having a sit on the bus.
Here is a personal example
I didn’t always needed a cane to assure my balance, but I do benefit of the seats reserved to handicapped people. Once, on a very bad day for me, I stepped in the tram which was crowded, the handicapped seats being taken by four adults around forty-five years old to whom I asked if I could sit. None of them reacted while clearly having heard me and a pregnant woman gave me her seat, which I refused, causing another person to give me their own seat.
The four people I asked a seat to then proceeded to speak rather loudly to how young people were such entitled assholes, forcing those older than them to move and such thing, until I gave them my priority card which finally got them to shut their mouth (even though none of them apologized).
This is one of the problem you face when you suffer from an illness which cannot be noticed on the outside. I can stand up, I have the right amount of limbs and no prosthesis anywhere to be seen which is the case of the large majority of people suffering of a handicap. This is why we’re often saying that we are fighting invisible battles, especially for those, like me, who suffer from a still rather unknown chronic illness called Fibromyalgia.
Me and my Bro.
This was the title of a personal blog I had in the past where I was attempting to explain the struggle to suffer from Fibromyalgia and to be recognized for it. As well as to explain how lucky I have been to have had friends who were suffering from it, so I didn’t spend between 5 and 10 years to know what I have.
In France, we only begin now to consider the idea that Fibromyalgia is a thing and those who suffer from it aren’t simply trying to find an excuse to do as little as they can. Last year, when I filled my handicap help request, they wouldn’t take it in account at all, at least now they do and it’s a big progress.
Fibromyalgia is affecting each person differently and there are so many possible symptoms that it makes it complicated to diagnose it, for now, the best way to do so is to test the Fibro points and if at least 11 of those are painful, it’s necessary to look for the other symptoms that can be related to it.. Or not. Here is a nice list which sum up most of symptoms, even though you can easily find lists with way more of those, there is even a 150 symptoms checklist available for whoever wanna panic instantly as most of those are pretty common.
Here comes the really fun part of the Fibro. There is no treatment. We know that some medication such as the Duloxetine has some effect on the pain induced by Fibromyalgia, but doctors and searchers have absolutely no idea why. The idea behind the treatment is to manage as best as possible the pain and the other symptoms, whichever they are, and to encourage the person to see a therapist as it may help to recover from it. But maybe not. Nothing is certain after all.
Living with your Bro
The complicated part of living with such invasive chronic illness is you never know what will happen tomorrow or even in an hour. The only thing you can be sure is you have limited energy, you are easily tired physically and mentally and some tasks which were easy to do a few years ago are now complicated.
- I couldn’t write this text as yesterday demanded too many spoons and I simply didn’t have any left to write.
- I usually need two hours in the morning before being able to do anything efficiently, during those two hours, I’m in pain, my body doesn’t react smoothly and by mental functions aren’t at their best.
- I generally need to nap after taking a shower because showering takes a lot of spoons. Some people need a break after dressing up as well, I’m not at this point but it may happen.
- If I’m in need to travel, to see my therapist for example, I need to prepare a snack, something to drink and take my cane even if it’s a good day because I know that the return will be hard and painful (and I’ll sleep for at least 3 hours right as I get home).
- I can’t have a fixed schedule, my life is dictated by my chronic illnesses (fibromyalgia, chronic migraine, lumbar disk decease or PTSD symptoms) and they don’t care if I have an important appointment or if it’s Monday and I intended to write a text about invisible illnesses.
I didn’t write that loooong text to complain about my situation. I have the chance to have been diagnosed rather easily and to have a doctor who is willing to learn more about the illness so we can progress together. I’m also followed by several specialists and medicated properly even though they also come with their lot of undesirable side effects (for example, being under Morphine to handle the pain augments the frequency and the length of my Migraines while at the same time lowers the effect of the medication to stop them).
I wrote it because I had the chance to be part of a community where two people were suffering from Fibromyalgia and told me to have it checked. Since then, I try to educate people about it as they may feel all this familiar or remember of a friend who doesn’t manage to know what happens to them and their symptoms are pretty coherent with the diagnosis.
If I have an advice to give, if you are taking an appointment with a general doctor, take with you some documentation about the tender points and a list of the symptoms where you will already have checked those you suffer from. Not every doctor knows how to handle Fibromyalgia and sometimes the best is to ask to be sent to an algologist if you have the opportunity to do so.