Chronic Pain- 3 Difficult Realities of Living with an Invisible Disability

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I am an individual with two medical conditions: Cerebral Palsy and Hydrocephalus. Each of them comes with their own sets of challenges, however, I have noticed that people around me are more forgiving of one than the other. The reason behind that, I believe, is that one is more visible than the other. When the symptoms of a disability or illness are visible, it is easier for people to be understanding; Invisible illnesses, not so much.

According to The Invisible Disability Project, invisible illnesses are defined as “An ‘invisible’ ‘non-visible,’ ‘hidden’ ‘non-apparent,’ or ‘unseen’ disability is any physical, mental, or emotional impairment that goes largely unnoticed. An invisible disability can include, but is not limited to: cognitive impairment and brain injury; the autism spectrum; chronic illnesses like multiple sclerosis, chronic fatigue, chronic pain, and fibromyalgia; d/Deaf and/or hard of hearing; blindness and/or low vision; anxiety, depression, PTSD, and many more.”

The invisible illness that most impacts my life is chronic pain.

Chronic pain is a constant companion that I never asked for. It is the cloud that is always following me around, threatening to rain on my parade, so to speak. Ironically enough though, the pain itself is not the most difficult aspect of this reality. This post is dedicated to outlining three of the difficulties of living with pain- my invisible illness. (These are my experiences, and there are certainly more!).

  1. Understanding that no matter what you do, you will always be in pain.
    I remember growing up thinking that there would be one day I would wake up and would be free of my disability and the pain that subsequently came with it. I also remember the doctor’s appointment where it was made very clear that this would be something I wouldn’t simply get rid of. I went to see my orthopedic surgeon a few days after I had botox injections. Botox injections “work by blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. This provides reliable relief from spasticity symptoms including pain and muscle stiffness. It has been used safely in thousands of patients for over 25 years.” (Rady Children’s Hospital of San Diego) I told the surgeon that I noticed a slight difference, but that I was still in pain. It was then that he said “Ashlee, you have a neuro-muscular condition. There is only so much that we can do to treat that, and the pain, too.”
    It was in that moment, seeing the look on his face, hearing the matter-of-fact tone in his voice, that I took the first step in my journey to accepting the reality that pain was going to be a varying constant in my life.
  2. Accepting that some days will be harder than others
    Living with chronic pain is difficult because, in my experience, no two days are the same. As I’ve stated previously, the pain is always there, yes, but the degree of it is varying. Today, for example, is one of my more difficult days. Not only are my back and hips bothering me, but an old scar and incision site has joined the party. My advice to you in helping to deal with this is knowing your body’s limits and listening to its needs, and do not push the limitations. I’m a fairly stubborn individual. I like to be on the go and doing what I have to. However, too often I would do too much despite being in immense pain, and it was my downfall. Did I get everything I needed to complete? Yes, but I paid for it with high levels of exhaustion, spasticity, and difficulty. Listen to your body. Understand that it is okay to know your limits.
  3. Acknowledging that some individuals will struggle to accept your reality because it is not one that they can see
    This is perhaps the most difficult one for me. There has been more than one day where I could not attend classes because I wasn’t well. When I told that to my professors, sometimes I was met with “well, you don’t look sick”. Well, true. I wasn’t unwell in the sense that I had a cold or the flu, rather, my body was unwell. To sit upright and listen to a lecture, or take notes was, at times, too much for my body to handle. That’s the thing about having an illness, condition, or disability that isn’t quite visible. People struggle to understand that some days are indescribably difficult.

Most times, I am the chatty, tea-drinking, happy-go-lucky woman that most people are accustomed to seeing. It is hard for some in my life to understand that just because my smile is wide and bright, does not mean that there isn’t something lurking below the surface.  Dealing with an invisible illness is difficult, and if you are one of these warriors, I applaud you! I hope this post helps people to understand that there are many faces of invisible illnesses, such as chronic pain.

Here are mine! I was in the midst of biting back a smile because of a joke I had just heard. What you cannot see is that I am gently massaging my left leg because I was experiencing an intense spasm. DSC_0324

Cell phones are a conveniently sneaky device. I picked up my phone moments after my hands became so spastic that I almost knocked over my drink because I couldn’t steady my hand. This, picking up my phone, is one of the tactics I use to quickly hide my embarrassment.

Life with chronic pain is not only laying down. It is not always being curled up into a ball with tears streaming down your face. It is powering through, despite it. The sooner people recognize this, the easier it will be to support us.