Over the past couple weeks I have consistently come up against walls put up by the biggest challenge of my young life: my illness. It comes and goes in waves, as many of life’s struggles do. One week I might wake up earlier than usual. I won’t get exhausted from showering and dressing and getting generally ready for my day. I’ll be productive, and best of all I’ll be optimistic.
The next week: sleep becomes a struggle, but waking up is like pulling myself from a tar pit. I’ll collapse onto my bed after getting ready and I won’t have the energy to move for another hour. I might have to stop making breakfast halfway through and lie down on the kitchen floor, the world dim and muffled. This, unfortunately, has been the entirety of March for me so far.
Chronic fatigue is balls.
Because it’s an invisible illness, you only see what I let you see. I could feel that I’m about to faint, but the instant a friend is nearby I’ll squash that down with an easy, “I’m okay.” Am I seeing stars? Probably, but you’d never know that. On one hand, that’s useful. On the other, it ends up with people vastly overestimating what I can do.
“The life of an invisible illness sufferer is riddled with what may feel like a barrage of insensitive encounters and whisperings …The invisible illness sufferer is often labeled as lazy while disease wreaks havoc inside their body.”
When my mum died nearly 8 years back I was often praised for being so brave and so strong because I never cried, always acting like it didn’t bother me. Nobody ever said I coped with trauma in healthy ways, but it’s because of the approval of me acting as if nothing was wrong that I fall into that same habit again and again.
I struggle to reach out and tell people how I really feel, and so I lack support, but I worry that being honest will also lose me support. Nobody wants to deal with a person who is sick 24/7.
So no, I won’t let that facade drop anytime soon. No, that doesn’t mean I’m better. No, that doesn’t mean I’m not terrified I’ll be stuck with this illness forever–because the truth is nobody knows if I will get better or not. No, that doesn’t mean I won’t need help some days. It just means that I am using the invisibility of my illness to avoid looking (and feeling) weak.
A person with an invisible illness–me, for example–may go to great lengths to avoid appearing sick. How many people have you met who have depression? Trust me, the number is higher than you think. Many people who suffer from depression are excellent actors.
As with many invisible illnesses, both friends and family will start to treat you different when they find out the truth. People will give you unsolicited advice, and often you’ll find yourself not invited to things you normally would have been. Friends will tell you, “You’re always too tired to do anything,” as if you didn’t already notice how much you miss yourself. It’s harder for us than it is for you.
I often don’t want sympathy (or pity), nor do I want advice. I get told, “it will be okay,” or, “it will get better.” 1, I’m already okay, and 2, you don’t know it will get better. Apparently surprisingly to some, I don’t hate myself. I have a lot of faith in myself, actually. I may not be overly fond of my childhood or of the limitations my body has, but I’ll be damned if that’ll stop me from being positive towards myself.
In the end, it’s just easier to act like I’m healthy.
“While individuals with visible illnesses do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others … for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all.”
Of course, I’m not healthy. By this point in time–well over two years since my first fatigue crash, and around a year and a half since my diagnosis–I know my current limitations (I say, after completely over-exerting myself over the weekend).
Thus, I am stuck in the uncaring and unfair welfare system. More than anything, I would love to get a job and get out of a system that has often not given us enough to afford food. There’s pressure on me from more than one place to stop being sick and become a real adult, as if that’s a choice I can just make. As if I’m living stress-free just because I can’t handle a full-on job. Often times it’s almost too much just keeping up with my minuscule writing responsibilities.
I know from experience that pushing myself now would drop-kick me straight back to where I was at the end of 2013: half dead and depressed. Where I am now is where I was in the middle of that year; I’m balanced on a knife edge. On one side: stability and a potential recovery. On the other: relapse.
“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.”
However, even though I try to not act sick, mostly everyone around me knows about my illness. This is for two reasons:
- So that others who struggle with similar problems know they have a person to talk to;
- So that if I do crash, people near me can understand why.
I refuse to act as if my fatigue is something to be ashamed of, because I don’t think any illness is something to be ashamed of–even if I often doubt how sick I am. Which I do.
Along with unsolicited advice (“Have you tried exercise?” “Why don’t you think positive?” “I was tired, and then I tried sleeping more!”), people with invisible illnesses often get called lazy, get told they’re making excuses, and on and on. It’s hard to not internalize those thoughts and start asking yourself, “Am I really sick? Is this all in my head?”
I have very clear memories of collapsing in the university doctors’ toilet, exhausted and sobbing because of my diagnosis. I remember barely being able to make the five minute walk home before passing out. I think of last week, when I couldn’t even make the few steps between my desk and my bed before falling to the ground. To doubt my illness seems ridiculous, right? (Imagine sarcastic laughter)
Because of this, it’s reassuring to see new studies and news about CFS popping up, such as a panel at the Institute of Medicine suggesting changing the name to systemic exertion intolerance disease, as well as setting more defined diagnosis criteria. To see real medical professionals take us seriously means that it isn’t just our imagination, despite what many of us have been told by others.
“The committee agrees that this term does not serve ME/CFS patients well. Furthermore, the committee concludes that the term “myalgic encephalomyelitis” is inappropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in ME/CFS patients, and myalgia (muscle pain) is not a core symptom of the disease.”
To have CFS/ME labelled as a disease could be a huge step in the way a sufferer is perceived when opening up to others and naming their illness. The invisibility, while useful at times, needs to not mean that our struggles are ignored.
Whether it’s called CFS, ME, or SEID, it’s something I have to deal with for the foreseeable future. I’ll still keep writing and cosplaying and taking photos. I still plan to travel and do things I love. I need others to accept that for now there are some things I can’t do.
I’m not going to give up on life, but I also need others to not give up on me.