While I am open with people about the severity and chronicity of my Migraines, I want to somehow live "above" them. I know inside that my attitude and behaviors will determine my psychological well-being as I walk this journey. To that end, I strive to be as upbeat as possible, to refrain from complaining about and cataloging my pain, and to have an attitude which focuses on hope. This frequently means that I present a face to the world which may not show the severity of my pain and disability.
However, over the last few weeks, I have had a bit of an identity crisis where a number of people have mentioned to me or to others that my Migraines were not as severe as x person's. Now, I'm not one to get into a "who has the most pain" match with anyone. In fact, I deliberately try to act and speak as if I am not in pain - not because I don't want anyone to know but because it is what I have to do for my own psychological well-being. The simple fact is that if I focus on my pain and give into my desire to moan, cry, curse and despair, I have but a very bleak life to behold. I don't think I would be able to endure such a life. However, when I "act as if" I am feeling better than I am, it helps me to get through the moment. This has led to some people questioning the severity of my pain and to others questioning my authenticity.
There is a part of me that wonders if I lived and acted how I really feel if others would take me more seriously and put more effort towards helping and understanding my illness. I have to admit to wondering if I've shot myself in the foot because of this. Would others (including doctors) help me more if I wore my "sick face" and retreated to bed in tears? Has my choice of attitude presented an oxymoron to others that tells them something different than what I truly experience?
This is something which now lies heavily on my heart. But it is also something which honestly makes me a big frustrated. Yes, when I had episodic Migraines, it was natural to moan and groan and go to bed due to the pain. But now that pain is a daily, 24/7 experience, maybe I've become accustomed to it - maybe I've developed some coping strategies which help me to give quality to my life. These include hiding my Migraines when I can because I don't want a life that is defined by Migraines. I don't want to be a walking billboard for all the effects of Migraines. It also includes me smiling even when I'm hurting; it means that I try to look for the good and for things for which I can be grateful. It means that I try to participate in life to the degree possible and that I save my suffering for private moments as much as possible. I have also found that in reaching out to others to encourage and support them that I take the focus off of me which, at least, psychologically lowers my perception of pain. Does this mean that my pain is any less real or severe? Not a chance!
I'm not suggesting that I am doing it the "correct" way - how could anyone know that? I'm just saying that I'm doing what works for me a large amount of the time. Are there days when I can't function at all? Are there times when I weep because of the pain? Are there times when I dread the future because I can't see a life without pain? Yes, but I can't live focused on that. If that makes doctors, friends, and family second guess the severity and frequency of my pain, I guess that's the cost I have to pay for I know that if I give in to this
on a regular basis that I will also be inviting despair, depression, suicidal ideation, and anxiety into my life. And I choose not to do that. It does not make me a "strong" person nor does it make me a malingerer or exaggerator - it simply makes me a person who is desperate to do whatever it takes to manage and to preserve some quality of life. The bottom line is the question as to whether I will let Migraines dominate me or if I will find a way to live at peace with them. Do I want a cure? Yes! Do I wish things were different? Yes! Am I going to let Migraines define my attitude toward life? Absolutely not!!
But I would ask that before you judge me that you take the time to ask about my experience. I am willing to share that - I'm just not willing to live it out loud.