The Downside of Having a 'Mild' Version of My Disease


Chronic illness isn’t always something you can visibly see and detect just by looking at someone. There are many types of disorders/diseases that can be mental or physical and still show no outward signs. It is my hope that by sharing my story, others can find some comfort and know they are not alone. Perhaps even to use it as a way to explain to the people in our lives how we feel and help them understand. It can be hard to accept but seeing isn’t the only way to believing.

I was born with a rare genetic disease called osteogenesis imperfecta type 1. This is the most “mild” form of the disease, but my life has still been greatly affected by it. Though I would not say I am as affected as others with the more severe types, there is one thing that makes type 1 especially frustrating to live with.

My disease is invisible.

 

With OI type 1, I do not appear different from anyone else walking around. There is actually only one way you could possibly detect that something is different about me and most people never even notice it until I point it out. The whites of my eyes are pale grey/blue. Despite a “normal” appearance, many type 1s have had numerous broken bones and most will deal with the effects of those breaks their entire lives. Especially when those breaks are in critical areas such as the spine, as mine has been.

You see, in a more severe case, a person born with OI may not be able to walk due to curving/fragility of the limbs, requiring a wheelchair to get around. OI can cause a rather broad range of disabilities from deafness, very short stature and bodily differences to the most important symptom, brittle bones, and easy fracturing. Tragically, with the most severe form, most infants do not make it through birth or die shortly after.

Osteogenesis imperfecta is a genetic mutation that causes our bodies to produce less or almost none of the collagen needed to build our bodies. Collagen is a very important building block and the less your body produces the more severe your symptoms will be. This is why the whites of my eyes are blue. The skin covering my eye is not thick enough to conceal the blue blood filling them. Gross, right? (And people actually have their sclera tattooed blue – but I was born this way!)

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Let me put it in a bit of perspective.

If you saw someone coming towards you in a wheelchair, you would obviously be able to see that they have a disability. If someone with visible limb differences that affect their ability to walk or even grow taller than three or four feet, told you they had a disability or chronic disease causing brittle bones, you would certainly believe them. Why wouldn’t you?

But, what happens when you take that same disease and make it mild enough that the body can still grow in a way that it appears normal? What would you think if a seemingly healthy, normal looking, young woman standing at 5’4″, able to move and walk naturally, came up and told you they had a physical disability? Maybe you would believe her, but more often than not, people seem to be skeptical or confused. Dismissal is common.

That is part of my own struggle with an invisible disease. I am 29 years old and I have spondylolisthesis, spondylosis, scoliosis and sciatica. (Some kind of trend there…) I broke my tailbone twice from slipping down the stairs and the first time was when I was 17. That is when I broke the L5/S1 that is currently causing most of those issues including pinched nerves and arthritis. Up until then, I had been fairly active and athletic.

As the years went by, the chronic pain became more apparent until I was no longer able to maintain a job. I can’t even recall the number of times at work I was misunderstood when trying to explain that I struggle because I have chronic back pain. What person under 25 has severe chronic back pain? Well… I do.

Chronic illness does not have to look like anything at all. It exists if people can see it or not.

There have been many situations in my life where people have been very quick to dismiss my disorder/disease. I’ve been told that my disease is “not a big deal” or that I’m “too young” for back pain. I’ve also struggled with chronic depression and anxiety. When trying to talk to a friend about it, I’ve been told I need to “get over it and just be happy” and to “stop letting doctors tell me there is something wrong when I’m fine.” People tend to forget mental disorders can be just as debilitating.

Yes, even those people who I thought were my friends have acted as if my bone disease or my mental illness was not a big deal because they don’t see it or believe anything is wrong with me.

There is just one problem – it doesn’t matter if they believe I am suffering or not. I still am.

That is why I have had to learn to reframe my own mind when it comes to these sort of reactions. Yes, it may hurt when a loved one refuses to understand and believe you when you tell them you have a chronic illness and it affects you greatly. It may hurt when people treat you like a liar… but it is not our responsibility to make them understand. We can only be responsible for ourselves.

When you feel no one cares or that they are all unwilling to listen, it’s easy to begin isolating yourself from everything. After all, why bother if no one will understand anyway? That’s part of what makes depression a self-reinforcing illness. The more you try to conceal your pain, the more it hurts. Don’t fall into this trap! Don’t treat yourself the way they treat you. You deserve better than that and no one should have to struggle in silence.

Don’t let the ones who deny you keep you from sharing your struggles. Reach out if you need to, seek others with similar struggles and don’t be afraid to ask for help. Eventually, people will come around and if they don’t, you will find new ones who never doubted you to start with. We have enough on our plate as it is without worrying about what other people do or do not believe we are going through.

Love yourself and give yourself a break (not the painful kind!). Most of all, let your voice be heard! If you have a rare disease or invisible illness, raise awareness! Do what you can to educate people who don’t understand and be willing to let go of the ones who don’t care to understand.

If I could say anything to “un-believers” of chronic illnesses, it would be this:

Your belief does not make our disease/disorder/illness anymore or less real.

Want to know what invisible illness looks like? The answer is, it looks just like everyone else.

Instead of passing judgment or assuming anything based on looks or even age, why not ask us to tell you what is wrong and really listen. If you don’t understand, ask how it affects our lives. Most of us will be thrilled to know someone cares enough to ask and will gladly try to explain.

If you live with or know someone who has an invisible illness, you might be surprised to find just how much a little bit of validation and willingness to learn more can mean to them. Pity isn’t always what a person is seeking when they tell you about their problems. We don’t expect you to fix us. Most of the time we just don’t want to feel invisible. Most of the time, we just need to know we aren’t alone.

So for anyone living with chronic illness, visible or not, I leave you with this. You are a warrior, you are valid and you are not alone. I believe and understand your struggles, even if it may seem invisible to the rest of the world. Know you are worthy of love and keep your head held high. Namaste.

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Thinkstock photo via Ralwel.

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