On the Care and Feeding of those with Disabilities and Chronic Illness.

 I am disabled, living my life from a wheelchair. I've been in the chair for over 15 years, and dealt with all the things that go along with my disability and chronic illness. So, as I write this, I simply write from the point of view of someone who has "been there" and is still there. That is all I can do, write what I know, so I'm sure some of this will not fit other's situations, and some will be spot on because I've spoken with others in this same boat as we float along on the journey of life. So, please, bear with me and understand I do not speak for everyone, and do not try to!

It is interesting, some days, being a person with a disability and chronic illness. When it all first really begins, and family and friends are getting used to the idea of your new situation, they don't always know what to say or do, and that is natural. It is often times up to those of us who are dealing directly with the problem to tell  them what we need or don't need. After all, they aren't mind readers any more than we are (unless you are a mind reader, then, well... you already know what to do <chuckle chuckle>) But what I'm really saying is, everyone is hovering around, wanting to know what to do, sometimes in the way, but in a good way (and some get scared and make themselves scarce because they can't deal with it, sadly). However, as time goes on, and folks get used to the idea, things change, and that's as it should be. They get less anxious, more 'comfortable' with the situation, and they begin to relax. Unfortunately, that also sometimes gives rise to some of them deciding they know better than the disabled or ill person what they need! Unless you live in the body of a person who is chronically ill/disabled  you really do not know what they are going through. So, in the next section, I'm going to put up some scenarios that I've dealt with, as well as others have told me they have dealt with. Remember, this is not to chastise anyone, most especially not those who love and care for us. This is just, hopefully, to help educate some folks on what to do, and sometimes, what NOT to do. 

Some of the examples below pertain to me, and others do not. I might not make evident which are which, for simplicity's sake.  

 1. If a person is in a wheelchair (the self-propelled kind), be sure to ask them if they would like a 

     push, before you take hold of the chair and begin to push. One, it is very startling to suddenly

     be moving much faster than you intended, two, you've now essentially taken control of this 

    person and their direction, and three, depending on where their hands are placed at the time, you

    could easily break fingers or hand bones! Also, be careful about bumping our chairs. It happens,

    of course, but I know that I personally experience pain every time that chair is jerked in any way.

 2. Never shove a chair out of your way! You would think this would be self evident, but I once

     had a lady in a grocery store move my chair (with me in it) because she wanted to be where I

     was! Now, most folks may not know it, but as I understand (and feel!), a person's wheelchair

     is considered an extension of themselves, since it is their mode of transportation. If you lay hands

     on the chair, you've essentially laid hands on them, which is assault in anyone's book! That said,

     it's just common courtesy not to shove someone  out of your way, after all, if I'd been standing, I         really doubt this lady would have done that. 

 3. Please, if your children are curious about the chair or any other aspect of our illness, don't yank           them away and tell them not to ask questions! This makes them afraid of us folks! I never want a         child to be afraid of me, for any reason! I'll answer any and all questions they ask, in, hopefully, a       way they can understand. That said, I'm sure not all of us  feel that way, so just ask us first if   it's      okay. But, even if the person isn't comfortable talking, please don't make the children afraid,                try to educate them yourselves, for you never know when someone they know will need a chair!

 4. Sometimes those with chronic illness/disability can become isolated. Many things can cause us not

     to be able to get out and about as often as we'd like. As a result of our often having to bow out of

     things we would like to do, sometimes folks stop asking us to go places. Just because I've had to 

     say no the last 3 times you've asked, please don't just decide that I no longer want to go. It may be

     a pain to you, but that 4th time, I just might be up to it, and will feel left out if not even asked. We

     become isolated enough due to the physical difficulties we face, and we so often feel so alone  due

     to not being able to get out, and to knowing that those who care about us can't really understand 

     what we are going through unless they themselves are dealing with it too. Even if they care for us

     everyday, and know our illness inside and out, they can't know our minds & deep thoughts and            pain.

 5. Other than chronic pain, my personal disability and illness can manifest itself in many different

     ways, often from day to day. One day it may be my body won't respond and I can't get out of bed,

     the next (or same day, later) my vision may be too blurred to even read. My hands may shake, my

     body spasm. I often have trouble swallowing, speaking, understanding. (This can pertain to                    many different illnesses!)  Some take this as "okay what's the problem du jour? "  I feel bad                 enough without feeling belittled because it truly can be 'something different every day'. 

 6. Please, ask us if we need help before you do so. We can be an independent lot, and sometimes

     we need to feel that we can still do things like we used to. Sure, there are times we can't, and we

     need to learn that too, but let us try, okay? And, then if we can't, please don't say "I told you so"

 7. I personally have no problems with questions! Ask me what I deal with, how I manage, if you are         curious. I know not all may feel this way, but ask them how they feel about answering questions,         and go from there. Sometimes, part of our isolation, is that those around us have no clue what we      deal with each day. That said, sometimes family we live with understand all too well and get tired       of it. As a result, we may be reticent to say anything, for fear we will get the reputation of being          "that person", you know, the one always talking and complaining about their health. I personally          have no problem with a friend telling me directly that I'm becoming maudlin and asking me to             change the subject, but that's just me. There are those who have no one to talk to at home, and              desperately need someone to understand.

 8. Unless we've asked, please don't bring us articles about the next big "cure" for our problems, or

     on how we can alleviate the symptoms. Believe me, we've seen them all. Some of us will try any

     and all promised cures etc., and some of us have reconciled ourselves. Also, some of those so

     called cures are dangerous. I've had more than one person show me articles on how bee stings are

     being used for some with my condition, as a help for symptoms. I am highly allergic to bee sting,

     and could die from just one, so, um, no thanks, LOL

 9. Tell us how you are doing. Ask us to pray for you or a loved one. If we can help in no other way,

     we can pray. We want to be included in your joys and pain, it makes us feel more 'normal'. Call,

     write, go out to lunch, and tell us what's happening in your lives. That said, let's not make it a 

     competition. Some folks hesitate to tell me of their own pain because, "It doesn't compare with

     yours!"  Phooey!  If it's your pain, it's your pain, and shouldn't be compared with anyone else's!

     What you feel is what you feel, regardless of what anyone else feels!

10. If you have not seen or heard from us for awhile, give us a call. We might need the connection, or

      we might need help. Sometimes we slip into depression, and that can get dangerous if no one

      checks on us. That said, it is always good to call before showing up at the door. It might be hard

      for some to get to the door in a timely fashion, and you may leave before we can get there!

11.  I have a family member, not close or immediate, but whom I occasionally see out and about.                Invariably, their comment is, "You must not be too sick, you look so well!" This always gets to          me. I know, I should be (and am) glad that they think I look well. After all, how would I feel if              they said, "Whoa, you look like hell!"? No, the problem is not with looking well, it's with the              comment that I must not be too sick. It feels like a negation of my situation, as if I've somehow            made up how ill I am and am just pulling their leg. Now, I am sure that is not their intention, but          that is how it sounds to someone dealing with chronic pain and other issues. You may have no 

       idea that I'm in constant, unrelenting pain, and have just found a way to mask it .

Okay, enough, I've already written more than most folks will stop to read in this busy busy world we live in. And still, there are other things I could add. Perhaps I should just add a new item to each blog I write, LOL, tacking it on to the bottom?  Just kidding. I hope these help and do not hinder! If you have ANY questions about how to handle different situations with the chronically ill/disabled, please ask me in the comments section! I promise to answer as soon as I can, and if I can't answer, I'll try to direct you to someone who can!  Blessings!