Thursday, May 7, 2009

Invisible Disabilities - the double edged sword

I have an incredibly painful, debilitating disease that is completely invisible from the outside. That is a real double-edged sword. I don't want people to feel sorry for me, so I'm glad that it doesn't show. And yet, coping with pain is so absolutely exhausting, I wonder if people around me understand that the exhaustion and mental fatigue are as likely to hold me back as the pain. It's a weird dichotomy - I try to smile my way through the pain so that people aren't aware of how much I hurt, but then I feel bad when my friends don't understand that I cannot do a lot of things, and that I might cancel plans at the last minute if it's a bad day. And it's not just the pain.

For some reason, and I have no idea what it is, nor do doctors, RSD sufferers (and I believe people with chronic pain in general) tend to hurt more at night. I don't know if it's a barometric pressure thing, or what, but the pain is much more intense when the sun goes down. So I don't sleep more than a couple of hours at a time at night. I take a long time to meditate outside the pain in order to get to sleep, then, when I move in my sleep, the pain wakes me up. Alternatively, if I don't move, I wake up because my muscles are so stiff and cramped. Then it will take me a couple of hours to fall asleep again. Consequently, I get my best sleep in the morning, from about 8am until about noon.

Well, when you tell people that you sleep until noon, they laugh at you. I feel like a teenager again, sleeping all morning. Also, I can't get much done. Business hours are from 8am to 5pm; companies don't care that I'm sick and can't do anything in the mornings. The people closest to me know not to call me or make plans with me before noon, but it's very embarrassing to tell new people. I feel like I have to go into details and fully explain my medical history to get them to understand that I'm not lazy. I don't want people to pity me, but I sure don't want them thinking that I'm lazy either.

Also, because my sleep pattern has been disrupted for so many years, I deal with constant fatigue and all the symptoms that go with it. Add all of the strong medications that I take, and what I have is a body that just cannot do all of the things that I want to do. I have the intense pain, I'm tired and lethargic with no energy at all, I'm nauseous and have horrible migraine headaches, and, probably scariest of all, I have short term memory problems. I don't know why I'm embarrassed about that, but I am. Nobody wants to think that their mind is going. And still, none of these symptoms show from the outside.

So I'm left with: do I wear my illness on my sleeve so that everyone will understand, or do I smile and laugh my way through life and put a brave face on, but then live with some humiliation? For me (and everyone is different and will make different choices) my best option is to do as much as I can, and do it with a smile. I don't want those around me to constantly see my struggle.

It may have been best said by Wayne and Sherri Connell in their pamphlet "But You Look Good!":

People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuries seem invisible to us.


  1. I too have RSD, full body now and it has brought some friends to play with....but I won't go into those.
    My opinion of why we don't sleep well is because as soon as you turn off your defenses, the Sympathetic Nervous System says: "Alright, I can run amuck now *snicker, snicker*" hahahaha
    So when it gets to be too much for your body to handle, because your mind is at rest, you wake up! That's just my opinion from experiments I have done.

    I noticed you are in the DFW area. I live in Abilene, but ALL my doctors are there in Ft.Worth so I am up in your neck of the woods frequently.

    Sometimes you can plan to go and do things with friends and family, then you start hurting and all you want to do is crawl back into bed and pull the sheet over your head to make the world go away. But unfortunately you can't always do that, so I have come up with methods of informing others if it's a good or bad day, without saying a word!!
    Also, you shouldn't be embarrassed of any feelings you have. They are valid reasons, so if others don't or won't accept that, then it is their problem, not yours!! Can you agree on that?

    Anyway, I applaud your honesty with us, and will keep you in prayer!!

    Make it an Amazing day....Every Day!!

    Coach Marla

  2. Thank you for posting your thoughts Coach Marla, I appreciate it. What you say about the pain being worse at night makes a lot of sense. We keep such tight control over our pain by day, we never let go and let the pain have its head, but by night, we relax our bodies and our minds trying to go to sleep. I suppose when we relax, we give the pain a chance to take control. (Isn't it strange how I talk about my pain as if it's its own entity.)

    I am very curious what "methods" you have for letting people know when you're having a bad time with your pain. Sounds interesting. It's true that sometimes it hits you from out of the blue. I can be doing okay, and all of a sudden, I'm in tremendous pain and feeling nauseaus and weak, and all I can think of is climbing in bed.

    If you would like to email me, I would be interested in what doctors you see in FW. Have you found a good pain management center? I'd love to hear from you, my email is in my profile.

    Thank you again for your thoughts. And I hope you are having a good day. Stay on top of it!


  3. I, too, have a really painful disease and also suffer from worse pain at night. I never could understand why it's so much worse at night! It's good to know that I'm not the only one.
    Over the years I've learned to sleep completely still--I don't move a muscle for the entire night (my husband says I look like a corpse in a coffin). We've actually been sleeping in separate bedrooms for years now because he doesn't want to wake me or hurt me when he rolls over in bed.
    If I move during the night, even a little bit, the pain will wake me up and then it'll take hours to fall back asleep. So I've learned to sleep without moving at all. For these reasons I also like to sleep late, and get my best rest between 7 and 10am (when the pain seems to lessen).
    I've always felt so guilty about that--about sleeping late when everyone else is up by 7am. I never want people to know that I sleep late. I guess I just need to give myself permission to continue this practice, and give myself a break!

  4. Yes, you really do need to allow yourself to sleep, and do all that you need to do for yourself, without guilt. But to be honest with you, I do the same thing. I get my best sleep between 8am and noon. But I feel ridiculous telling anybody that I sleep until noon - like a teenager. When I have to make appointments for home health visits, I make sure it's in the afternoon, and I try not to have to explain why. It's silly really. We're sick, not lazy!

    I really think others understand it, we are just not so understanding with ourselves. So how about this: I give you full permission to sleep as long as you need to. The way to fight illness is by giving your body all that it needs. Being in pain is exhausting, it takes all of our energy just to be awake, no wonder we need more sleep. Your most important job is to take care of yourself so that you can be fully active for those around you that need you.

    Okay, now you give me permission.

    Really, we must learn to be better to ourselves, it's not our fault!

  5. WoW, I am the same way with fatigue and I sometimes sleep until noon or later just because Ineed the sleep and can't get it at night. Judy I am so glad I have gotten the chance to meet you. I feel connected to you in a way!