You may look at my young, healthy-appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?”
What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to faux-cure-evangelists.
What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.
What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.
What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?
What you don’t see is my squirming in bed from the pulsing, unrelenting pain in my joints. You don’t see the contortions I’m capable of just to find a millisecond of relief from the pain that keeps me awake hours into the nascent morning.
What you don’t see is the self-doubt that has has skyrocketed after years of trivialization and stigmatization, as sickness plummets me deeper into depression and unhealth.
You don’t see me crying in bed, arm-in-mouth-trying-not-to-scream from the pain and anger at all the things I can no longer do and the agency I have lost as an individual.
You do not see the friends I have lost because I can no longer show up for activities that once defined me. You do not see the challenge in making new friends because I am largely home-bound.
You might look at me and wish you didn’t have to work, either, that maybe you’d like to “stay home all the time and play hooky.”
What you don’t hear when I am in a crowd is a constant replay in my mind of the things people have said to my face: “You’re too young to be sick.” “Young people don’t get arthritis.” “But…you look so good!” “I think of you when I get sick and count my blessings.” “You should exercise.” “You know, there are cures out there for people like you.” “You just want to be disabled.” “I hope you get better soon!” “You should try this new supplement.” “Use your willpower to get out of that wheelchair.”
What you don’t hear are the noises I make when I don’t think anyone will hear me, when it feels as if my body can’t handle it anymore.
You don’t witness the trips to the pharmacy where I learn my refill has been denied, again. You don’t know that then I become the liaison between doctors and pharmacists and insurance to work it out. It shouldn’t be my job, but it falls to me.
You don’t hear the exasperation in my voice when I call a friend asking if I should go to the emergency room because I can’t handle any more pain, even though I know the hospital will make me wait for hours and then treat me like a drug seeker.
You don’t count the multiple doctor visits I have each month, the time I spend in the waiting room, the routine labs with the multiple tubes of blood I fill.
You don’t witness the wrenching pain of lying still in the MRI machine for 10 minute segments repeated for an hour, how my body stiffens and goes into a flare for a week afterwards.
You don’t hear the specialist say, “Let’s try one last treatment,” when it really is the last treatment approved to treat my disease, and the anguish when I wonder what will happen if that one fails, too.
You don’t see the pills I count out each week, and their side effects I have to plan around.
You don’t see the pain. The depression. The struggle to be resilient. The money I worry over. The paperwork I have to complete with achy hands.
You don’t see the work of the professional patient when you say I need to suck it up and try harder, or that I haven’t tried enough treatments, or that it’s all in my head.
The medical establishment is my office, and my colleagues are the nurses, doctors, and pharmacists. Believe me, I’d trade you jobs in a heartbeat!
Perhaps you wonder why I don’t just tell you when I’m hurting. Maybe you think I don’t want your help?
And I can’t help but imagine that maybe if you really knew, you’d hate this for me. Maybe you’d pity me and you wouldn’t know what to say or suggest that could ever help or make anything at all better. Maybe you’d feel helpless. Maybe if you really knew, it would be as overwhelming for you as it is for me.
That’s scary. And I get it. I get all these things. I used to be healthy, too. I was a college athlete. I worked more than full time. I ran marathons. I admit that I used to think sick people should just try harder. I admit that I told people what I thought would help them. I wanted to FIX people’s bodies myself!
I thought I was doing something to make everything better, when in reality I was silencing their sickness with advice that made me feel better about myself. I was contributing to their feelings of being invisible. It kept me safe from having to really listen to what they were going through. It protected me from being overwhelmed myself.
And now that I’m living on the other side of healthy, I am trying to help people understand the toll it can take.
I know you want to help, but please, just know that you can’t take away my pain and disease with treatment advice. You can’t fix me. What you can do is listen and validate my experiences – and believe me, I understand that will take some vulnerability on your part.
I promise, I’ll be able to talk to you more openly about my disease if you listen rather than try to fix my brokenness with cures I’ve already tried, treatments I can’t afford, and advice that is insensitive.
I want to be seen for who I am, supported for what I’m fighting, and trusted with my own body.
Oh, and there are two other ways you can help: chocolate cake and money. Those fix everything.
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16 thoughts on “What I Wish You Knew About Living with an Invisible Disease”
i know its difficult to live in such kind of diseases.
Reading this has helped me understand what my husband is going through daily. It is hard from this side seeing his deterioration. Some days are good. Waiting to hear if he will be granted temporary medical disability .
So frustrating and annoying when people tell us to try this vitamin or supplement or cut out a particular food, watch your diet etc. They truly just don’t understand.
Take care all you AS warriors. God bless
Hi Theresa, thanks so much for your comment and for trying to understand what your husband is going through. I know I wouldn’t want to see anyone go through my symptoms, so I can only imagine how difficult it is for you.
Your comment helps me know I’m making a difference.
I’m ashamed right now. Because when reading this I actually felt a bit happier,knowing that there’s more people out there who has the same problem as I do. But in reality I wish that no-one had, that’s why I’m a ashamed of myself.
I’ve just had one of those days… I have a really dear friend. She’s been beside me through the harsh time of being diagnosed and finding a treatment, and then going through some nasty side effects. All of sudden she’s changed, if feel that it’s my fault, I wore her out, she couldn’t take it anymore. She told me I shouldn’t read so much about the disease, reading and getting information would get me sick. I tried to explain, I herd to know what this disease is doing to my body, I want to be prepared, I want to know what to say to a dr at the ER if she/he hasn’t heard of it. I have to be in charge of this. But she said no, I shouldn’t read about what might happen because maybe I could be that lucky one that get cured. I heart dropped, I felt like hadn’t realized what this disease is all about after all. Next she sold me I should go to a spa. I could get some rest there, I could get some help with my mental issues and find some alternative treatments.
I’ve been heartbroken. I feel like I’ve lost a friend. I know that she’s still there but she doesn’t understand, she thinks I’m faking it, that it’s all in my head.
Oh my, how horrible! I’m so sorry. It sounds like your friend hasn’t accepted this yet – I do hope she comes around before it’s too late.
And how horrible for you to have to rely on her help knowing she is judging you. I hope you are finding support somewhere in addition to her.
Have you asked her to read a blog post from someone else going through what you are going through? Sometimes it’s easier to believe when they hear it from a stranger.
So. Much. This. *gently holds your hand*
I’m holding your hand right back!
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I know that I am a little late on commenting on this. However, I have recently been diagnosed with AS. I have been fighting it for years though, always being given the brush off, always its this that or the other, take 2 Tylenol and let me know if you don’t feel better. After a while, I stopped saying I don’t feel better, then would question myself, am I really feeling this, maybe it is all in my head? So I would try to power through all of it and pretend I was fine.
Long Story short, I had a flare that no one could ignore, my fingers looked like sausages and my feet were so swollen I couldn’t put shoes on, let alone walk. Ironic how happy you feel when your so sick, that you cant be brushed off anymore.
I just wanted to take a minute of your time to tell you that you are appreciated!!! Your blog is spot on as far as how hard it is to live with an invisible disease. It is so helpful to know that I am not alone in this! That someone else knows my pain, not just the physical but the mental anguish as well. The mind games we play on ourselves, just to get through a day.
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Someone, thanks for your comment. I’m glad you have found something that helps you feel less alone. Take care.
I lived thru it with my father. Now its my turn. I am a patient advocate. Won’t be able to travel much longer.
I’m so sorry, Kay. Thank you for being a patient advocate.
So spot on. Thank you for sharing! It is so difficult to explain to those that care and those that don’t. All we can do is be as open about our disease as possible.
I hope this helps some people who have no idea!
Fantastic capture of what goes unseen to the world. All I ever hoped for when it came to others as I walked this path was….”Believe me” …please, it would be so very helpful you could just believe me… believe the effort is total and believe the pain is brutal…one can never understand this pain other than to walk it….but perhaps you can believe me…. well, that would be so very helpful…
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Such a beautiful way to put it, Jim. Thanks
I know your pain trust in God