I was asked why I am not making my posts on Invisible Illness Week and my reply was that my health is no longer “invisible”. When you reach the point that you are attached to an oxygen hose 24/7, spend most of your time in a hospital bed from high pain and illness, have to use a power chair, must use forearm crutches to stand and having to be on the “Long term care” program to keep you from a nursing home and able to stay in your own home….it is very visible. Perhaps what makes it seem not so bad is my attitude and smiles.
What I can say is that I remember the days years ago when it seemed invisible to people and how many thought I was fine. The funny thing to me and yet I liked it…was a dear friend who told me when I could still walk around on my forearm crutches (less than two years ago) and she told me that she never even really saw the crutches when she was with me because I was so upbeat and smiling and positive. But, I have always been a person that wanted others to see ME and not my illness or all the gadgets I have to use to survive. I also quit expecting those that did not have chronic illness/debilitating disease to understand for they will never get it much as we may want them to.
Like many, when I was earlier in my diseases, I kept trying to educate people what invisible illness was, kept trying to prove to them how sick I was and talked about it a lot. And then one day, a very wise person told me a few years back that people will NEVER ever fully get it because people who have not experienced it can not get it. We can think we understand something we have not experienced but in reality, until we experience it first hand, we do not. It is like those that have never lost a child trying to give words of comfort to someone that has and make statements like “well, you can always have another one” or “you are lucky, you still have two other children”. They mean well but they do not get the pain.
I think one thing that has made me different from many over the past few years is I do not spend all my time reading on, studying, talking about, reflecting on, etc….being chronically ill. It IS my life and I do not need to add to it. I want to live and enjoy what I can. And so, I have never even thought of myself as disabled or chronically ill…even now. I come from the thought process that what you talk about a lot you are giving power to and I do not want to give power to my diseases or disabilities. I want to enjoy the good times, make it through the bad and make the best of all the times. No matter how bad I am, I manage to find something to smile about and after reading yesterday about how much a positive attitude affects survival, I will have to say I felt like maybe I was doing the right thing after all.
So, I do not do videos labeling all my symptom. If I did, I would have to gain weight to have more space to write. LOL. I do not talk a lot about being sick or exhausted or in pain and mainly the reason is that when I say I am bad, people know I am really bad because they have not heard me say that much. And I do not try to “educate” others about what invisible illness is because you can not teach people to understand what they have never experienced. It is like with pain. Most people will tell you if you say you suffer high pain 24/7 that they do too. The problem is they do not suffer chronic pain but are referring to a really bad headache or backache they had one day. Being chronically ill means it never ends.
When I was still in the invisible illness stage, some of those symptoms waxed and waned and I might have a fairly good day and not feel too bad and then have a really bad day or might divide and be half fairly good and half bad day. And I might be able to go outside or go places but not anymore. And that is one thing that makes it hard for those with invisible illness. It did me when I was still in the “invisible illness” stage and made me constantly defend how sick I was but as I learned….people still did not get it. But now, my health problems never end, I have more auto immune disorders, have had lung surgery, kidney surgery twice, RFA to burn the nerves in my spine on 16 places and 8 of those places just recently done again, fallen repeatedly and torn rotator cuffs, pulled ribs out-of-place, twisted vertebrae, twisted the bones in my wrist, etc and there are no “good” days physically and so I have learned to make my own good days laying here on the bed and learned to not let it rob me of my happiness and joy.
And I stopped a long time ago trying to make people “understand” how sick I was because they can never understand what they have not experienced. I am in charge of me and my happiness and so I set boundaries and do not let people intrude when I feel so sick I can barely hold my head up or am exhausted and need sleep. I resort to things that are not rude by very clear such as notes on the door saying “Please do not knock or ring the bell as the person inside is very sick today and does not feel up to company”. That keeps me from having the confrontation with people who do knock or call and from allowing myself to get upset. I turn the ringer off on the phone…Oh my a new concept, LOL….and I take care of me. I can not educate them but I can set boundaries and educate myself on how to protect myself from their ignorance. And when people make dumb comments like “hope you get well soon”, I laugh because I know it has nothing to do with me but with their own ignorance. So, that is why I do not do videos and long posts to educate people on Invisible illnesses.
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