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People often don't get it. They don't understand chronic migraines, fibromyalgia or what it's like to live with these conditions. Of course, how could they without experiencing it? Heck sometimes I don't even fully understand it. These well meaning people often don't know what to say or how to react. Instead of asking questions or saying something supportive they often say things like "well you look fine", "you just need to get out more" or one of hundreds of other dismissive, blaming, discouraging or hurtful things. Unintentional or not it's quite frustrating.
On more than one occasion I've considered distributing a prewritten statement of sorts explaining things but have never actually followed through. Then it occurred to me, some of the blame is on me. I've made the conscious decision to NOT share much of the ugliness with them.
My family and friends know many of my stats like I average 18 migraines/months, it's been going on for 6 years, I haven't been able to work, etc. They all know I have this anonymous blog and why. When they inquire about how things are going I tend to be honest but smile, skip over the details and change the subject.
As much as part of me wishes they could understand I know understanding can't be achieved over dinner. My life these days is pretty complicated and my migraine/fibro foggy brain doesn't exactly make explaining these complexities easy. Besides understanding isn't necessarily what they are seeking with their inquiries.
My family, friends and I may all be guilty of avoiding these unpleasantries in most social situations. They don't know what to say or do, and I just want to enjoy myself and try to feel as normal as possible even if only for a short time.
At times, when I don't feel like it (I rarely feel like it), I'll get dressed, put on makeup, go out, sit up straight, smile and converse. What they see very closely resembles the me they have always known and so that's how they treat me. Honestly, I LOVE the way that feels - it almost makes me feel like the old me.
So as frustrating as it can be that people don't get it, I know I deserve some of the blame. My hope is that from now on I won't get so frustrated by these comments but rather learn to enjoy the charade being played.
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Hello Migrainista,
ReplyDeleteI completely understand how you feel. It's such a complex condition to explain, there is no neat, pithy one sentence to sum it up that to adequately describe it to friends takes a while and if you decide to go for it - to explain, you usually see their eyes glaze over. Anyway, I don't know if you saw this "Stuff Healthy People Say to Sick People' made by a Lupus Sufferer. I posted it last week and thought it might cheer you up! http://www.migrainemonologues.com/2012/03/stuff-healthy-people-say-to-sick-people.html
Thanks so much for sharing this link. I got a good laugh :)
DeleteWell-meaning and yet clueless describes the people who love me and wish they understood what's really happening inside me. Me too and my doctors most especially wish they could pin it to one thing and Cure it, so far not yet, but I still hope and am grateful for the regimen that keeps me going most days. On the bad days I try to sleep it off interspersed with reading.
ReplyDeleteI've kinda taken the route of avoidance myself these days. When others ask how I am....I tend to say "fine" and change the subject. Actually....my usual response is "I have good days and I have bad days". What I do not admit to is the fact that the bad days far exceed the good days...but who's really counting!
ReplyDeleteYou may want to enjoy the charade, but family and friends can't be sympathetic to your needs if they don't know what those needs are.
ReplyDeleteOh, I am not sure "blame" is the right word, Migainista. I, too, have 18 migraines per month, more bad days than good, and often go out even when I feel awful. AND as much as I can, I gather up all my energy to act "normal" despite how I feel. After I hit the wall -- you know, that place you get to at which you cannot fake it any more, try as you might -- I just excuse myself, having planned my exit before I even left the house. It's graceful and perhaps deceiving.
ReplyDeleteBut I don't want to go out just to get treated like a sick person. When I am succombing to the migraine, it's written all over my face, even though I am trying to hide it. Not to mention I cannot hold my head up. Then I get all the comments and questions (you were fine when you came in, etc.) But I would rather have had the time to just have fun as a non-migraineur does.
Then I go home and collapse :)