I, too, suffer from chronic, invisible illnesses.
I have fibromyalgia. I have a permanent back injury. I have depression and anxiety, and I work hard to keep those under control. I strive to take good care of myself, and to manage my conditions. I avoid aggravating them. I also make every possible effort to stay positive and to do the things in life that I enjoy doing.
The fact is, though, no matter what good care I take care of myself or how positive and proactive I am, I cannot heal or cast off my invisible disabilities.
The debilitation is real.
The exhaustion is real.
The misconceptions are real.
And the judgement? Many people would not be willing to believe how real, and how consistent, and how very, very toxic that is.
The critics are only right about one thing: I don’t look sick.
That’s because I’ve been faking being well for years.
This year Invisible Disability Awareness Week falls on October 18th to 24th.
According to the Invisible Disabilities Association, the term invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences, mental health disorders, as well as hearing and visual impairments. They are not always obvious to the onlooker, but can sometimes or always limit daily activities range from mild challenges to severe limitations and vary from person to person
Because Invisible Disabilities are not visible to the eye it can cause issues. Some of these issues are judgments when we use disabled parking or disabled bathroom stalls and others feel the need to make an issue out of it… because we do not Look disabled.
1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) have a severe disability, while only…
It’s been a rough week, both emotionally and physically. Sleep has been patchy, which isn’t unusual for me, and my back pain has been relentless.
Naturally, my fibromyalgia decided to join the pain party with some extra bass beats and neon flares of its own.
Yesterday I chose to work through it. I’m a teacher working from home and my students are depending on me. It’s not that easy for substitute teachers to step into a remote learning classroom and make things happen the way I want them to. And, you know, I didn’t have to drive to school, which helps when you wake up in crushing pain. My classes were great, and spending ninety minutes with Genghis Khan in my Year 8 History class was a good distraction.
When my classes finished, I had to go to town to pick up my much needed new glasses, I’ve been struggling with eye fatigue while doing so much remote teaching, and it’s fair to say that the curriculum planning and lesson preparation don’t stop just because we’re working off campus. It was a 45 minute drive, but I just went there, got my glasses, and came home. I am not interested in shopping or spending any more time around people than I need to right now.
When I got home, I rested. Dinner was easy – the soup was already made, and just waiting for us to enjoy it with a spinach and feta bread twist.
I really hoped the evening of rest would be enough to make the pain flare back off.
So, by necessity, this weekend has to be a quiet one.
My new glasses are great, but I’m not going to be spending much time on screen. I’d love to read a book, but my hands hurt too much to hold one for long.
So, I will do what needs doing, and that’s it. I have a couple of new podcasts to road test, and then I’m going to indulge in an audiobook. I’ve got my recliner, my quilt, my cat, and the sound of rain falling outside.
Choosing my content is important for my mental and emotional wellbeing. I’m taking care to exclude anything negative, so I’m avoiding the news and social media. Throughout the whole Covid-19 pandemic and working from home experience, I have found that to be a good strategy for keeping my mental and physical spaces positive and healthy.
I’ve also got my pain medications handy in the drawer just beside me, because those things are my friends. It’s all well and good to be idealistic about managing pain and not relying on drugs, but on flare-up days, there is absolutely zero chance of that happening. A girl has to do what a girl has to do.
The aim of this post is not to complain. My spirit is still quite positive, albeit a little weary after working hard to tick things off my “do or die” list this week. Instead, my purpose is to raise awareness of what it’s like to live with Fibromyalgia.
People cannot see my illness. It’s easy to feel sympathy for someone in a cast, a wheelchair or a hospital bed. I notice an immediate difference in people’s responses on the days I need to use my walking stick. Some are kinder, and most are more physically careful around me.
Of course, there are always some who couldn’t care less about someone with a cane, but there is no point losing time or sleep getting upset about them. Their attitude only highlights the good in others’.
My disease is invisible, although some of its effects are not. I may look tired, or upset, at times. My emotions sometimes get a bit messy, although I am a good actor so most people don’t know that.
After a busy and somewhat stressful week, my body is letting me know how unimpressed it is. My pain levels are in the “stupid” range. My legs don’t want to bend anymore. I have zero need to take my pulse because everything is throbbing. Even typing this is slow because my fingers hurt too.
To anyone else, I probably just look like someone in a recliner, covered with a quilt on a cold night, typing on her iPad. The truth is, I want to go to bed but I don’t want to move because I ache so badly.
I have medicated, but it’s not touching the pain. That’s always good.
In a further act of bodily insubordination, my very dodgy spine is giving me spasms— yet another an indication that I have probably (read: definitely) overdone it, yet again.
I don’t want sympathy. I don’t want medals or admiration, or people telling me I’m brave.
What I want is for people to understand that Fibromyalgia and other “invisible illnesses” are not imaginary. They are not something we adopt because they are “trendy”.
Fibromyalgia hurts. And it sucks. And it doesn’t go away.
And if you think I “don’t look sick”? Just remember, you can’t see my superhero cape, either.
I could have spent most of Fibromyalgia Awareness Month writing about my experience of this condition. I could spend a year writing what people don’t know or understand about it.
However, I plan for this to be my only post on that topic during this Fibromyalgia Awareness Month, because I don’t like to complain and I don’t want to sound like I am hiding behind my disease or making excuses.
Fibromyalgia is a diagnosed medical condition— now. It wasn’t always. It has a wide variety of symptoms, although they basically all contribute to chronic pain and overwhelming fatigue.
Because of Fibromyalgia, I have pain all the time. Think about that.
Pain. All. The. Time.
It doesn’t ever completely go away. The best I can hope for is that it will ease off a bit, and that I’ll have more good days than awful ones.
When people present to the Emergency Department or paramedics with pain, the standard procedure is to ask them to rank it between 1 and 10, assuming that 10 is the worst pain they have experienced. I wake up most days to a starting level of about 4 or 5 for me. With medication, I can generally keep it down to about a 3.
That’s why I have structured my working week so that I start a bit later in the mornings. It’s not because I don’t want to get out of bed: it’s because when I do, I am stiff and sore and it’s really hard to get moving. As the day wears on, my pain levels start to increase. My legs feel heavy and hard to lift when I walk. My feet begin to ache, and that often turns into a throbbing pain that starts to work its way up my legs. It can take hours for the aching to subside enough to let me sleep, especially if I have been on my feet a lot. A similar thing happens with my hands and arms if I am using them a lot, and especially if it involves holding or carrying anything with a bit of weight in it. It’s not unusual to end each day feeling like I’ve been either beaten up or body slammed by someone or something a lot larger than me.
Anytime I get stressed or anxious, or when my depression is messing with me, my pain levels flare. Overtiredness also increases my pain. Sometimes, I reach that level of tiredness by lunchtime and still have two classes to teach and a 40 minute drive home before I can rest. Add in a work deadline or two and things can get pretty horrid.
All of this is completely separate from my back pain, which is a different thing and a different type of pain altogether, and which I am able to manage fairly effective for the most part.
The problem with pain is that people can’t see it like they can if you have cuts and bruises or a cast. You can hide a lot behind makeup and a smile.
When they call this an invisible illness, they’re not kidding. If I had a dollar for every time someone said to me “But you don’t look sick,” I could quit work and live very nicely on the interest. It’s such a shame I can’t bill people for their insensitivity or ignorance.
I know it’s not a death sentence like some other diseases are. It is, however, a life sentence. As things stand, there’s no cure in sight. All I can do is keep up my painkillers and anti-inflammatories and hope for the best.
None of this makes me, or anyone else with Fibromyalgia, weak.
It takes strength and courage to get through each day, and sometimes that’s on a moment-by-moment basis. It takes resolve to blink away the tears and keep showing up for work or social or family occasions. It takes guts to say, “Actually, I’m not doing so well” when people ask, or to write a post like this one. In a world that prioritises health and beauty, brokenness is often an unpopular confession.
I have Fibromyalgia. I don’t want sympathy or pity. I don’t want people to tell me I am strong or brave. You bet I am!
What I really want is more awareness, better understanding, and more effective pain relief. And a cape. They can’t see my pain or my superpowers, but they’d be sure to know I have something if I were wearing a cape.