The ABCs of Disability – The Letter W

(Image from We Heart It)

There are always articles about people who are dealing with an illness who say they never think of the question “Why Me?”.

I don’t buy that!

“Why?” is one of our favourite questions.  We are curious creatures.  We ask because we want to learn and understand.

I think it’s only natural to ask the question.  We tend to not ask the question that often when things are going well in our lives.  It is in our darker moments we will ask “Why me?”.  It may, at times, even come out as “woe is me”.  We all know we have our up-and-down days.  Days when we are  stressed, sick, in pain,  angry and depressed because it seems there is only so much that can be done to help us, or worse, nothing that can be done to help us.

And when we feel at our loneliest, when we are struggling with the complexities of being worn down by our illness, it sometimes feels like we’ve been sent into some sort of chronic illness exile but we don’t know why.

But, equally important when we are living with a chronic illness, is the medically curious question “Why me?“.  What is it about me that made me sick?  Was there something or someplace that I could have avoided? Is it genetic? What about viruses?  Environmental?  Did I not eat enough dirt as a kid and develop an immunity?

The list can go on and on.  So can the emotional upheaval if we think asking why is a bad thing to do.

I think asking “Why me?” is a legitimate question to ask.  To ask “why” is to acknowledge what is happening to you and to seek some understanding of what is happening.  Scientists ask the question all the time.  And we are all our own scientists.  We know how we are feeling, we know when something “just isn’t right”, we know when we’ll have a good or bad day.  We know this because we ask the question, pay attention to what is happening to us and we learn.

We may have people in our lives who think we shouldn’t ask the question, not to torture ourselves.  They mean well.  They don’t want to see us suffer but by denying what is going on and what we are feeling doesn’t help us.  It only hurts us.  Ignorance may be bliss in some situations, but not ours.

I don’t know.  Maybe it’s because people are afraid.  Afraid of the unknown or, depending on the knowledge of the disease, afraid of the known.  What eventually does stick with us is the word “chronic”.  It’s not going away.  It’s not an acute illness.  There is no “band-aid” of some sort that will make us better.   Having a chronic illness means that, for many, there will be major adjustments that will be with us for the rest of our lives.

That is why we have to be our best advocate and as our best advocate we have to be as proactive as we can.  We have to ask why.  We will have barriers put in front of us that we thought would never happen.  Friends, family and even our doctors not believing us.  Finding out that little is known about a particular disease and that there doesn’t seem to be as much research being done as with other illnesses.

However, we are very lucky.  If we can afford the internet, we have access to information and online support that we otherwise may not have or would be hard for us to gain access to.  There will be times when we are soaking up information and times when we are on information overload or brain fog kicks in.   But, we owe it to ourselves to ask “why” and whatever other questions that will ultimately help us.

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2 comments

  1. I just can’t imagine anyone not asking why?
    But it does drive me crazy when someone asks me why.
    That’s the one thing that my husband does that drives me crazy. When ever I have an attack he will keep asking why, trying to figure out what triggered it. Frankly, I don’t care at the moment, I just want it to stop. And I’ve tried and tried to find some rhyme and reason as to why my attacks happens…and yes, I do have some correlation between some, but some of them just come from out of the blue. No reason, and I’m not going to beat myself up trying to figure it out. But he wants a reason. It’s his way of coping. Sometimes, I used to feel so much like it was my fault when I had an attack, I ate too much salt, I didn’t sleep enough, I got too upset….so trying to figure out why, just made me feel worse. Now I tell him to shut up about it. I don’t know! It just happens. I will not feel guilty about it. (does that make sense?)

    I want to know a reason for the whole disease. Why do I have this?
    That’s why the study that I’m in with Dr. Gray and Dr. Kaylie looking into the Cerebral Spinal Fluid connection is very interesting to me. But it’s also nerve wracking…what if they are wrong.

    I do agree, asking why is a good thing a lot of the time.

    However, I am afraid of what I see with some people who are so desperate for answers that they will grasp at any answer. There are a lot of people who will take advantage of people who are desperate. I keep seeing ads that say this will cure Meniere’s and that will cure Tinnitus. You know people are spending good money on these snake charms. I used to check out the Meniere’s support group boards, but there were so many people on there looking for a magical cure, and others who were willing to lead them to something that worked for them. (sure it worked for them, they probably own the company that sells these supplements.)
    It’s just so sad.

    It’s healthy to ask why, and search for answers, but we all need to make sure we are paying attention to reputable sources.

    Great post!
    wendy

  2. Wendy, what you are saying makes perfect sense. I know people don’t want to see us sick but, if we don’t know the answer, we don’t know the answer. It’s not like we’re not trying to find out. And it’s so easy to drive ourselves crazy trying to figure things out and have answers.

    When I first got sick, the flu was especially bad that year. In fact, starting the following year the premier made it so that each winter anyone can now get a flu shot for free, whether from your doctor or at flu clinics. But the winter when I was first sick, it seemed that all that was on TV at the time, for health related stories, was about the flu, about viruses and how doctors think that viruses kick-start some diseases. There were so many people sick that year it was that big of a story here. And, of course, being home all the time I watched all these stories.

    Then, to make things worse for me, I had a woman’s health book that also had a glossary of illnesses and such at the end of the book. I stressed myself out by looking at that book and trying to self-diagnose that at some point I had to just stop looking at it. I was my own worst enemy.

    As for now, I know the weather affects me, moving my head too much and keeping my head turned right for too long if I’m having a conversation with someone. I don’t know about sodium. I track my meals and that doesn’t seem to be a factor with me, although I do try to keep it within the range for sodium.

    My mother had Meniere’s and I asked the doctors if this is something that could be genetic and inherited in some form. I was assured no and I thought, uh-huh, no is too easy an answer. But, you never know what they may find out. It just seems to take an eternity because there are so many discoveries happening right now, but so much is at the beginning stages of discovery and we all want answers and a cure now, now, now!

    That probably is one of the hardest parts, though. Seeing discoveries and treatments for other diseases and there seems so little for dizziness. Patience is only a virtue if it’s not affecting your health and your life.

    Maureen

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