Living with an Invisible Illness

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When Fibromyalgia was first mentioned in the medical world, due to its inability to be diagnosed through an actual test (blood, xray, MRI etc), it was mocked and dismissed, causing untold trauma to people seeking help for this debilitating condition. Countless numbers of people fell silent, coming to the realization that many were not taking their symptoms seriously and in some medical circles, even until this day, dismissed as being fakers.

Having had this condition for many years, I can tell you with all certainty that I only wish that it wasn’t real. It’s in the forefront of my mind right now, because I’m going through a horrible amount of pain that is life-limiting and exasperating. It is depressing to be in constant pain and I do not want to, nor do I take pain pills to dull the symptoms. I now know that pain pills are not going to help with the now recognized nerve-based disorder. Stanford University’s Division of Pain has an excellent article that discusses Fibromyalgia with the serious approach and respect it deserves.

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A frustrating aspect of being younger (I’m in my early 50s so young-ish or whatever you want to call it) and being in debilitating pain is that you feel that you constantly need to explain yourself. Add in the depression, anxiety, gastrointestinal and other aspects of the condition and you do everything you can to not appear as an invalid. I can’t tell you how frustrating it was over twenty years ago when people would dismiss my claim, roll their eyes or otherwise make disparaging remarks about my pain and symptoms.

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It reminds me of when my son was born. Autism was still VERY new to the medical world. My former in-law said, and I quote after all these years, “People have been parenting children for millions of years without all this bullshit. Did you ever think that your not spanking him hard enough?” He and my late husband would openly mock me and as always, as I’ve heard throughout my life, “You read too much”. Thankfully, I stuck to my guns, reading voraciously, and while no one is asking me if I’m “spanking him hard enough” anymore, I do hear the “Well, he doesn’t look autistic!” comment from time to time. I even roll my eyes at that one!!

Autism does not have a blood test and its diagnosis much be relied upon through clinical and parental observation, hence the reason why it is still viewed with skepticism or other such opinions like, “it’s over-diagnosed” or “we never had this much autism around when I was growing up”. Well, when I was growing up, people put children with Down Syndrome in mental institutions to rot and that’s not how things are done today, right? It’s called change, progress and medical advances.

Technically, I am eligible for a handicapped placard for my vehicle. When my pain is really severe, I often wonder if I should just go for it, but I remember the times I’ve heard people openly mocked and judged when they get out of their vehicle and don’t appear visibly disabled. “Must be nice being able to park close for no reason!” or other snarky things have whizzed past my ears over the years and I have no desire to be a part of that.

One particular phrase that is hard for me to address is the fact that a few times, I have been accused of lying about my pain so I didn’t have to work. If you knew how untrue that is and how much I wish I could do more, contribute more, BE a part of something other than feeling trapped inside the house with my pain, you would know how incredibly distant that is from the truth. I love to paint, to craft, to work with wood, to make jewelry, but sometimes the pain is just too much. I want to set things up so I can start again, but I resist asking for help every single time. I have everything here I need to get started, but I don’t ask for help because it’s so much work.

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This is quite a sad list. Number 5 is such a positive though. I can’t tell you what it’s like to wake up and realize that the pain is only a 6 and that I might be able to get more done than I can. Then, I start out and walk and my legs go numb, my feet feel like I’m walking on hot coals and I push through until I’m almost ready to fall over, afraid to disappoint or cut something short. I despise pain medications and I avoid taking them, even when I know that they would help, every once in a while, if only to have a little bit of relief. They conflict with my anxiety medications and I need them too. A constant dilemma that is endlessly circuitous.

So, instead of taking the time to judge, chastise or otherwise dismiss someone’s pain and suffering, just imagine what a kind word could do, a moment of understanding or, in many cases, just to say nothing at all for a person living with an invisible illness. You never know if someone has fibromyalgia, autism, a heart condition, cancer, crushing grief, depression, living with abuse, oh I could go on.

I leave you with this to contemplate…

never-underestimate

5 thoughts on “Living with an Invisible Illness”

  1. Your words echoed so many of the thoughts I’ve had over the years, right down to why I haven’t gotten handicap plates for my car. I’m 54 and have lived with Hypokalemic Periodic Paralysis, and after years of misdiagnosis and all the usual suspicions (it was in my head, I was faking, I was doing it for attention,) it was finally diagnosed, but not until the permanent weakness was undeniable – that, and my heart stopping. By all standard measures I look like the picture of health, both in diagnostics and appearance. But you can’t judge a book by its cover.

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  2. Thank you so much for taking the time to comment. I try so hard to “pour my heart out” so to speak and really talk candidly about what it’s like. The medical community wants to fix everything with pills and it’s time to move forward and give people real choices. I just started physical therapy for my fibromyalgia. I know it’s not a “cure” but it’s a way to hopefully retain mobility. I’m so sorry you went through years of misdiagnosis and are finally on a road to hopefully feeling better or at least managing. Please stay in touch!

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