She's a character, she has opinions.

Learning to be disabled in my own way.

with 3 comments

Blogging Against Disablism Day, May 1st 2010It was only recently I was told in a very gentle voice, “You’ve gone past the time when this would have healed itself.”


I’ve had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an illness, something that was temporary, but was a long-term disability. That was a difficult adjustment, learning to use that word, to apply the “disabled” label to myself.

One of the things I struggle most with is the concept of my own rights. Do I have the right to tell or not tell about my invisible disability? Do I have the right to say no, even to myself and my own desires? Do I have the right to reject treatments and pain management drugs because I prefer the pain of PHN to the side-effects? Do I have the right to be disabled in my own way?

I’m not as patient with myself as I am with others. Not as kind. Though depression and anxiety have been a life-long battle they’re also something I’ve learned to deal with, something I can to a small degree control. They’re familiar to me, the old friend who isn’t welcome but comes back anyway, that family member you have to deal with even though you don’t particularly want to. I understand my mental health issues. Post-herpetic neuralgia is different. It limits me in different ways, in ways I haven’t yet mastered being patient with. I expect it to be as controllable, as easy as my depression and it isn’t.

If I don’t fully understand disability and what it means for me to be disabled, how can I expect others to? That’s also been a learning experience, figuring out what to say and who to say it to. I don’t owe anyone an explanation but, still, there are explanations I must give. It’s easier when it isn’t personal. Work, school, those were simple. I used medical terms and faxes from my neurologist, and the world of liberal academia being what it is, my word was accepted and my disability acknowledged and not judged.

Personally it’s so much harder. What does it mean when I say I’m having a good day? People think it means just that, good with all its sparkly, wonderful, pain-free connotations. That’s an abled person’s assumption and it’s one I understand because my abled friends and family have no baseline understanding for disability. Neither did I, no matter how much I sympathized and cared, before it happened to me. When I’m having a good day it means my pain is less, not gone. It means I have some degree of energy, however small. It means I’m not consumed with just getting by and can enjoy a little something.

I said I’m not patient with myself. It’s been difficult for me to learn when to push myself onward and when to slow down or stop. I had to learn the hard way by pushing myself too hard and too long then spending the next several days taken over by the pain and exhaustion of PHN. Still there are times when I ignore my own limits because there are things I want to do. I need to learn to do better. I need to learn to care for myself better. I think my family is better at this than I am; they give me more understanding than I give to myself.

Post-herpetic neuralgia can’t be cured, it can only be managed. That’s something I knew from the beginning and something that was easier to accept when I thought–hoped–my PHN would last only a few months, maybe a year tops. Still, even then it wasn’t easy. In a society that advertises fast cure-alls during sitcoms people come to believe that getting better is as easy as taking a pill.

Pain management has been one of the most disappointing and angering parts of my disability. I’ve tried so many medications, suffered so many side-effects, and in the end none of them worked the way I wanted. If I had less pain I also had greater fatigue and exhaustion. Or I had increased anxiety. Or I had all those things and still had the pain. So far the trade-off hasn’t been worth it to me. I could have a slightly lesser degree of pain but if that means spending 20 of my 24 hours each day asleep and the other 4 wandering around in a mental fog I’m not willing to do it.

When I tentatively embraced the word disabled last Fall I thought I would be learning How To Be Disabled, as if there were a manual I could read or a set of PHN Disability Instructions that would guide me through this process. What I’ve come to realize is that I’m really learning how to be disabled in my own way because I’m the one who matters most when it comes to my disability.


Written by tldegray

May 1, 2010 at 7:55 pm

3 Responses

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  1. i have a google alert for all things post-herpetic neuralgia and this blog post popped up today and i am glad it did – i am coping with PHN as well and as a young woman this has taken me by surprise and since december 2007 i am also past the point where this would have healed itself. i have recently taken some time off work to help balance the pain management and the exhaustion and the self care that comes with the debilitating illness… it would be great to share notes with someone else who has been through it all…


    May 3, 2010 at 12:45 pm

    • I sent you an email earlier today. I’d be delighted to compare notes with you.


      May 3, 2010 at 10:30 pm

  2. Hello. Sorry for any typos, but I’m extremely tired at the moment. Whilst I can’t say I understand what it’s like to have PHN, I do have a condition which also causes me to feel fatigued, sick, in pain, etc, a lot. I’ve had it since I was ten (for almost eleven years now). I doubt it’ll go away any time soon. I, too, had to learn what I can and cannot managed, which has changed for both better and worse (for different aspects) over the years. Because I was so young, and hit me so hard, I think I took the road of not pushing to the very limits. There was no point; even getting up and ‘being’ was that tiring; difficult. These days, as I get older and am expected to be doing more with my life, I think I may consider the cognitive and emotional aspects harder than ever. My parents were never understanding; anything they did to help was out of despair that I could do nothing they wanted me to. I’m terrified of relapsing and taking away any chance of the future I always dreamed of; a future without this. But I always remember to be grateful that there’s a chance I’ll get slowly better. I barely believe it sometimes, but I know deep down that it’s there. When I feel like giving up, I try to think about sufferers like yourself who don’t really have a chance of improving. I’m sorry if it seems like I’m…rubbing it in? I’m just trying to say I somewhat understand, and that I hope you don’t lose spirit.


    May 3, 2010 at 10:07 pm

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