By Jorie –
As I sit here writing this letter, and as you sit here reading it, you may believe that because I’m physically and mentally able to write in this moment, because I am conscious and communicating well, that it means I’m not in pain, that I have zero symptoms affecting me. That maybe even I’m faking it or I don’t have anything wrong with me. I have heard your seething words behind my back before…“she just wants attention,” “how can she have all of this wrong with her when she’s so young?”
You’d be sorely wrong. What I am faking is being well. And it is true, that unfortunately medical problems like mine can strike in mid-20’s and much younger.
I want to give you a peek into my typical day and how each of my individual conditions impact me. I seem to lead a fairly normal life; after all I hold a job working from home, I’m married, I have 2 adorable dogs, and I post on social media about going out with friends from time to time. However, those are tiny slivers of my day to day life.
I’m going to show you, disbeliever, not to point any fingers, but to open your eyes…because sometimes it is difficult to explain in person how gravely I suffer. Not to mention that I often don’t allow even myself the honesty, either, of admitting it. But here I will be 100% open. Because here, I want you to believe me.
Right now…I have severe head pain I woke up with that interferes with my daily activities. It may not seem like much to you because I have become an expert at hiding it over the years unless it is absolutely debilitating. But each day includes head pain and the symptoms that ride along (such as vision problems, aphasia, nausea, and more) and I just simply find a way to navigate through it all in order to have some semblance of a life. I have to. Otherwise, my life would be in shambles 24/7/365. Is that what you want to see? Is that the proof you need from me to believe that I live in such pain? This is Chronic Intractable Migraine.
That’s not all, though.
Right now…the surface of my skin is like a delicate butterfly wing—touch it and it will seemingly dissolve into ruins. My skin is excruciating to the touch and my nerve endings are ablaze in a fury of a thousand bee stings. My muscles ache as though I ran a marathon and simultaneously carried more weight than any human could ever bear. The fatigue I experience is beyond what I thought “tired” meant before I was diagnosed with this disease. The brain fog is thick and as I work my mind can’t conjure up certain words and at times I cannot remember what I did just a moment ago; this makes me work at practically a snail’s pace. This is Fibromyalgia.
But still, that is not it.
Right now…my joints are on fire as if acid were coursing through them. My connective tissue feels like jelly each time I extend a finger, and arm, a knee. I’m sometimes afraid they may fall off, at times I stumble and have even fallen at home, luckily with only a few injuries so far in our new house. On the contrary, they also feel like they are locking up and I may never move again, frozen like the Tin Man and I’ll be stuck in this singular position for the rest of eternity. As I move my fingers to write this very article they are screaming and begging me to stop. The throb is awful. This is Ehlers Danlos Syndrome and Rheumatoid Arthritis.
And yet, you may think this is the end of my list—I wish it were so.
Right now…I have zaps of pain darting down the back of my skull and into my neck and spine. The same zaps spread into my face: temples, cheek, jawline. It is a deep, electric stab. It’s a flash that only lasts for mere seconds (for now) but is unbearable at the same time. Moving my neck is impossible during these attacks, moving my jaw to talk or eat is unfathomable. I have become frightened to do small tasks that may trigger it: showering, brushing my teeth, eating something chewy, moving my head or neck quickly. At times I feel like my neck or jaw must have been broken; there seems like no other explanation. This is Occipital and Trigeminal Neuralgia.
I am still not done…
Right now…my heart rate is higher than it should be and all I’m doing is sitting here writing. My blood pressure is lower than it should be. If I stand up, both will get even worse and if I accidentally do it too quickly I will get extremely lightheaded and dizzy and run the risk of fainting. Blood pools at my feet and my hands swell. My body has a hard time regulating its temperature as well as any other autonomic nervous system function. I have to use a shower chair to prevent the risk of falling or fainting in the shower due to temperature changes, and I wear a FitBit as a heart monitor to alert me of dangerous levels, such as when my heart rate skyrockets into the 200’s. This is Postural Orthostatic Tachycardia Syndrome.
For now I will close my letter on these illnesses but my life certainly doesn’t end there. The comorbidities, both physical and mental, that exist between all of these ailments are astronomical and I don’t know that I could fit them all into one letter or article anyway.
My point is, it is extremely important to simply believe someone suffering from chronic illness and give them that small gift. They will be beyond grateful for it. It is exhausting to spend our time justifying every part of our health. Believe them when they say they are suffering even if they do not come out and openly show their pain, symptoms, or feelings about it all. It isn’t easy for us to be open about it, even with our own doctors. We have become so accustomed to hushing up, pushing it back, bottling it up, that we don’t always know how to come out and tell you all about it.
The main thing is this: we just need someone, especially our loved ones, to believe us without questioning us. Without conditions and ultimatums. Without hounding us. We need support, encouragement, and love in order to heal in the best way possible. You may not be able to “see” everything happening behind the scenes for us, but please believe us when we say it’s happening and that we are suffering.
That’s all I ask. For myself. For all of us in the chronic illness community silently enduring chronic illnesses. We desperately need you on our side. I hope now, that maybe you believe me.