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When Friends Try to Be Understanding by Saying 'I Know How You Feel'

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When my “healthy” friends ask about how I’ve been doing and I’m completely honest in answering them, something I’ve noticed is that the person doesn’t know what to say or how they should respond.

Sometimes others are left speechless when you’re going through a difficult time in your life. These people could be your family, your closest friends or even strangers. They are left without words to say, unable to give comfort that could help. It’s a common misconception that people need to speak words that will provide a platform of understanding, and that will somehow automatically take away the pain or the problems another is dealing with. Yet sometimes those exact words could leave us feeling lonelier and more misunderstood, especially when battling a chronic illness.

It is human nature to respond to a person who is talking about their chronic illness with a simple statement to show that “understanding.” The statement is this: “I know how you feel.”

Recently, I had another case of aseptic meningitis, on top of Lyme disease and multiple autoimmune conditions. The pain from the aseptic meningitis leaves me in an agonizing pain that is even difficult for me to put into words. The massive pressure sensation in my head makes it feel as if my head is being blown up like a balloon. I’m forced to lay flat, as any change in positioning will make that pressure sensation increase. I’m unable to turn my neck, and there is an awful burning pain from my head straight down my spine. Now, add in the everyday fatigue, joint and nerve pain, daily migraines, low blood pressure and tachycardia, and it’s fair to say I feel absolutely miserable when this happens. I am unable to do a thing except for exist and pray the physical pain eases up soon.

After telling this to a friend of mine, he replied with: “I know how you feel. I couldn’t do anything when I had casts on my hands.”

After re-reading that text message a few times, I couldn’t comprehend how someone could understand on any level how I feel, unless they deal with chronic health conditions.

After thinking for a bit, this is what I have to say:

No, you don’t know how I feel.

The truth is, you have not felt the physical discomfort that I have endured or am enduring in this exact moment. You do not know the level of discontent I feel while I struggle to be calm with myself as my own body and immune system chaotically attacks itself. You have not felt the sheer anxiety and fear I have felt during nights when I am unable to sleep due to the intense physical pain. You have not felt the sense of helplessness I have felt when not even my doctors are certain of what the next move is. Between multiple failed treatments, medications that have either resulted in allergic reactions, severe adverse reactions or not worked at all and having several chronic conditions in which some of the treatments contradict each other, you do not know how I feel.

Everyone knows illness to some degree; whether it is the flu or a cold, an injury or a chronic illness. To compare two broken hands to a flare of aseptic meningitis, whilst I battle Lyme disease, two forms of neuropathy, narcolepsy with cataplexy and dysautonomia in the form of postural orthostatic tachycardia syndrome (POTS), I can’t help but find myself befuddled when the response to my venting was, “I know how you feel.”

The difference here is, you knew that your hands would heal. Your doctor gave you a timeframe of how long your hands would be in casts for, if you would need physical therapy and possibly how long it would be until you were at optimal functioning levels again. I, on the other hand, do not have that. I do not know when this flare will end, and after this one ends I do not know when the next one will happen. I live my life on a constant day-by-day basis, and when shit hits the fan, that turns into a minute-by-minute basis. It’s the nature of the beast. I do not have a successful pain management plan, for I live with chronic pain, and when there is another insult on your body on top of the other chronic health ailments, it becomes even more difficult to get pain levels remotely “managed.”

In the end, you will be cured or healed. For the rest of my life, I will be what is considered “managed” and on “maintenance” treatments. Remission would be a sheer blessing; but even then, the tiniest cold or insult to my body could send my immune system into a frenzy and unleash a relapse.

You do not know what that is like. I know that people who say this have nothing but good intentions and that their hearts are in the right place. It’s OK to not know what to say, it’s OK to be speechless. Sometimes words aren’t needed to provide comfort; the best thing to do is offer a shoulder to cry on, a listening ear and a heart that cares. I am very happy that you actually don’t know what it’s like to have a chronic illness, and I wish that no one would ever have to know what it is like. So please don’t take it the wrong way when I reply, “No, you don’t know how I feel.”

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Originally published: February 24, 2017
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