What It’s Really Like Living With an Invisible Illness

Many thanks to our guest writer Pamela Jessen for sharing her powerful testimony below on what it’s like living with an invisible illness.

When you’re living with an invisible illness, you can look perfectly fine on the outside. The inside though is often a dramatically different story. Those of us who face this battle day in and day out live with burdensome conditions such as fibromyalgia, arthritis, migraines, Ehlers-Danlos syndrome, autoimmune disorders, Sjogren’s syndrome, bipolar disorder and depression. The list doesn’t end there.

Facing the invisible illness experience 

I’m 56 years old, and I’ve been living with fibromyalgia and osteoarthritis for over half my life. I have over 14 distinctly separate health issues, all of them invisible except for my brachydactyly, which is a shortening of my ring fingers and toes. To look at me, you would see a petite, vibrant woman with a radiant smile and an outgoing personality. But inside, I am in constant pain with joints that feel like they are trapped in a vise and muscles that are filled with concrete.

I can’t stand for longer than 10 minutes without being agony over my lumbar spine. My thoracic spine is covered in bone spurs that look like melted candle wax. I’ve had a right total hip replacement and my left hip will need to be done soon. My right knee collapses at will with a shooting bolt of pain, and I’ve somehow suffered injuries in both my Achilles tendon on my left side and my rotator cuff on the right side. All of this plus arthritis in every major joint in my body and the fibromyalgia to boot and my body is a mess. Oh, and I have Type 2 diabetes, gastroparesis, hypothyroidism and bipolar disorder. And those are just the major things.

Confronted with misconceptions 

Living with an invisible illness can seem like you have to constantly fight to have your illness be seen as legitimate compared to someone who uses a mobility aid like a wheelchair or a cane. Resources and tools that show the public someone has a physical incapacity makes it easier for them to practice acceptance and tolerance of limitations and abilities.

It’s when you look fine on the outside though that there’s another layer of battle to face. Heaven forbid you park in a disability parking space; even when you have the appropriate placard, the looks and the confrontations for not looking/being disabled enough can be frightening. I found that having a strong backbone to put up with the comments and confrontations thrown your way is imperative (but not easy when your backbone is covered in bone spurs!). I remember being almost relieved when I started using a cane: I knew then that I looked legitimate in others’ eyes and that I was less likely to endure confrontations or anyone questioning my use of the disability parking spaces.

Planning and managing everyday life 

Does anyone remember The Picture Of Dorian Gray? It’s a Gothic novel by Oscar Wilde about a man who stayed perpetually young while his painting grew older and older. I see invisible illness in a similar way: A Picture of Dorian Pain where everything on the outside stays the same, but your insides deteriorate. It’s not pretty, but it’s the reality many of us face.

Living with an invisible illness creates countless challenges. We have to explain to people why we’re able to do certain things one day and not the next day – or do much of anything the next day. It takes so much energy to push through chronic pain, fatigue, depression, or whatever else your illness decides you need to face on a given day. A simple task today may render you too exhausted to do anything tomorrow except for move from bed to recliner. That’s certainly the current pattern of my life. Everything has to be planned out carefully to make sure I’ll have the energy to do what needs to be done. Dealing with chores and household tasks are aggravating enough, let alone wanting to do something fun.

What I want others to understand 

What I want those are not living with an invisible illness to know is that those of us who are feel completely and thoroughly peeved a lot of the time. Our lives feel as if they are slowly being stripped of anything fun. What we do – or can plan to do – is based on not just how we feel at that moment but how we might feel in the few minutes or hours.

We don’t want to cancel plans. We’re often angry and jealous that everyone else can drop what they’re doing to go have fun whenever and wherever they want. Personally, I’m resentful that even when I have my hip replacement surgery it’s likely that it will only fix a small portion of my health issues. I’m exhausted from working so hard to stay positive; if pain were a person right now, I’d kick its sorry ass from here to Hell.

rant over

The power of pacing and speaking out

One of the things we invisibles often have to do is ration our energy to make sure we have enough to do everything we want to do in the course of the day. We pace ourselves. We want to do so many things: we want to be like we were before, have fun with our family and friends, enjoy spur of the moment activities – all just because we are able to do so. We may look like we’re capable on the outside, but unfortunately living with an invisible illness makes actually feeling capable terribly arduous.

This might sound like a big bunch of complaining, but really it’s an attempt to speak out for those of us living with an invisible illness. Our day-to-day experiences are steeped in burden. Speaking out on our behalf is a chance for me to educate others who are quick to judge when they think we look fine on the outside and to help them understand what we are forced to experience on the inside.

We want to belong. We want to do things like before. We want to feel healthy and well and normal and good. But that is often not our reality. Please look beyond what you see. We’re still the same fabulous people we’ve always been; we just have a new reality now.

And for those of us living with an invisible illness, please remember one thing: there is always hope.