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.