My courage is visible. My invisible disabilities are not.
This is my sixth year writing for Invisible Disabilities Week. If you’re following me on social media (Facebook or Twitter) you’ll see these posts going up for awareness in honor of Invisible Disabilities Week which runs from October 17th to October 23 in 2021.
My entry for 2020 is called Invisible Disabilities: Did You Know? It’s a basic fact page and you should read it so you can learn more about the many different types of invisible disabilities!
When you see me, it’s unlikely you can tell I’m disabled. This is because when I do leave my home, which is quite rare these days, especially in the past four years, I’m having a day with low disease symptoms. This means I’m still in pain, but my symptoms are allowing me out of my house. You’ll never see me on high pain days because I can’t get out of bed, and it’s impossible to sit up or hold a conversation with someone.
I live with inflammatory arthritis (Axial Spondyloarthritis and Psoriatic Arthritis), fibromyalgia, and MECFS, which are my primary diagnoses. I have a lot of secondary diagnoses that are also invisible but disabling: migraine, IBS, insomnia, and never-ending chronic pain are some examples.
Arthritis makes life difficult for me in many ways. I snap, crackle and pop like a bowl of Rice Krispies. Despite being 46 years of age, I move like I’m 90 years old. I’m stiff and in pain with hot, swollen joints all the time.
And then there’s fibromyalgia, which causes widespread skeletal and muscle pain that makes me feel like I’ve been beaten to within an inch of my life every single day. MECFS and fibromyalgia are very similar in symptoms and they cause cognitive issues and chronic fatigue. I’m not talking about being exhausted from life.
I’m talking about autoimmune fatigue that sucks the life out of you. No amount of sleep and rest will ever allow me to recharge my body. I live with an energy deficit and, for me, that means that if I surpass my energy envelope, I will crash and suffer the payback, which is an increase of symptoms related to pain and fatigue.
What does it take to get through the day with invisible disabilities? It takes visible courage.
Each day I wake up in pain all over my body at 4:30am. I try my best to go back to sleep, but usually wake up again at 6:30am in a massive amount of pain. From then on, it’s a battle to get out of bed. It can take hours. After I get out of bed, I try to take a short five-minute walk because it’s important to move when you have arthritis. If you don’t, you get stiff and it becomes more painful and eventually you stop moving completely and end up in a wheelchair. But the strange thing is that fibromyalgia and MECFS hate movement, so if I do too much at one time, I get sick.
The crash that I experience from too much movement and activity – and this includes mental activity as well – is called a PEM crash. Post exhertional malaise occurs when I’ve done too much activity or if I’ve overdone things with mental work or experienced too much stress. In short, a PEM crash is exactly what it sounds like.
Post-exertional malaise (PEM) refers to a worsening of ME/CFS symptoms after minimal physical or mental exertion, which can be delayed 24-72 hours or more.Source: https://me-pedia.org/wiki/Post-exertional_malaise
My PEM crashes almost always happen 72 hours after activity. So I always get to the point where I think I’ve escaped it and then I get really sick. It feels like I have the flu, I get nauseous, I get a migraine or intense headache, I have extreme brain fog, photophobia and intense sound sensitivities that can be caused by something as small as spending too much time in the car or lifting some laundry that perhaps was heavier than I guessed.
My pain and fatigue get worse. I lose the ability to move, it gets harder to speak and think clearly. Basically I have to stop everything and let my body rest because it’s telling me no more. I can forget about trying to do anything for a few days. After the crash eases a bit, I can usually go back to having enough energy to wash my hair and get cleaned up. Sometimes I don’t.
Overall, I try to wash my hair twice a week and make it as easy as possible since it’s hard for me to keep my arms above my head for too long. (That’s arthritis for you.) Plus using my arms uses energy and that can also lead to a PEM crash, so you can see that the cycle is vicious and unavoidable.
My diseases impact every single aspect of my life, so when people tell me, ‘Oh, you talk so much about being sick‘, I hope you understand that this is my life.
While you might be sharing photos of your outings with your kids or going to music concerts or traveling or having fun eating out or going dancing, I’m always home resting so I can get an hour or two out of my home each week. Sometimes that happens, but most times it doesn’t. For years now, I’ve been able to leave my home once a week for a few hours at a time and the payback is fierce.
So this IS my life and I will talk about it as much as I want.
Because my diseases impact my daily life, I experience pain everywhere and crushing fatigue; I have idiopathic insomnia; I experience cognitive difficulties and digestive issues. I have depression and terrible anxiety. When daily habits that we take for granted like taking a shower, making food, driving somewhere, doing groceries, cleaning the house – when these types of things become harder to do or impossible to do – that’s a disability. I can no longer function like healthy, able-bodied people do.
It takes courage to get through this and I think my loved ones get it. They know I haven’t given up despite the overwhelming presence of illness. They know I am resilient and will try to keep going. They know I have a lot of downs, but that illness has allowed me to focus more on finding small moments of joy in each day.
I am a goddamned warrior for continuing to battle through these illnesses after 13 years of being very ill, hundreds of hospital and ER visits, dozens of different kinds of medications, weight loss and weight gain, hair and nails falling out, pushing through trying to get food into myself – all while trying to continue to bring money in to pay for my treatments since I am not eligible for disability in Taiwan because I’m not Taiwanese.
No one can ever call me cowardly or weak. I’m tougher than most people I know.
I have limitations and I try to respect my limits with invisible disabilities, but sometimes I fail and get moody and emotional.
Most days I am simply not well enough to participate in activities or go to special events. I still commit to going to something special, but always with the caveat that I know I might have to cancel last minute. Believe me! I want to be there. But chronic illness is unpredictable and my health can go from ok to very bad in under an hour. That means I’m a no-show for many things.
I pace myself by sticking to strict limitations so I can manage my pain. For example, I never go past 3,000 steps per day because if I do, I’m going past my energy envelope and that will definitely result in a PEM crash. I try to achieve my 3,000 steps per day by going for short walks. I do a thousand steps three times per day if I can. Some days I don’t move at all.
Sometimes I fail with my limitations and this can be easy for others to spot when I become distressed from doing too much. For example, it’s not uncommon for me to get really emotional and start to cry over nothing when I’ve hit the end of my energy reserve. I was with friends the other day and got very emotional and it was clear to me that I was done. I was at the end of my energy limit. I knew it was time to go home and my body was making sure everyone else knew too.
So if you see me out and I’ve been there for an hour or so, but you see me getting cranky or I’m in distress, it’s time for me to leave and I hope you can understand that.
Mood swings and depression go hand in hand with chronic pain. Plus pain puts us on edge all the time.
You should encourage me to get out of my house when I feel that I’m able to
My husband is getting very good at this! Lately he has been reminding me that I need to seize those good moments when I can and leave my home. He knows the price I pay when I do this, but he also says my mood is improved when I’ve gone out to see some of my favorite people. So he encourages me to try and go for an hour or so and he’ll support me by driving me there or picking me up so I don’t have to navigate Taipei’s inaccessible streets.
My mom also encourages me to make an effort to see people when I can. And, of course, my friends offer to visit often.
Stop the stigma and support people with invisible disabilities
What I Want People To Know About My Invisible Disabilities: Inevitably, I get comments that 'I don't look sick' or 'they'd never know if I didn't tell them'. And that is why I'm so vocal about living with invisible illness. Click To Tweet
I’ve had people that showed disbelief when I told them I was disabled.
I’ve had people judge me at the airport for using flight assistance.
I’ve received threats from people who thought I was faking it when I asked for assistance.
I can’t express how frustrating it is to live in a world where these types of things happen to people who are already fighting so hard to live their lives. It’s important that you believe us and support us.
I’m lucky to have people in my life that understand what life is like with invisible disabilities, but inevitably, I always get comments when I’m out that ‘I don’t look sick’ or ‘they’d never know if I didn’t tell them’. And that is why I’m so vocal about living with invisible illness.
When we share our stories, it helps to normalize what we’re going through and reinforces that fact that there are millions of us everywhere living lives that are quite different to what yours might be.
We need you to help us make an able-bodied world more accessible so all the burdens of living with invisible illness, whether you are deaf, blind, in a wheelchair or using a mobility aid, have epilepsy or psychiatric invisible disabilities, it’s important that we ALL have access to living our lives with as much freedom as possible.
We need patience, compassion, and understanding.
We need you.