I’m so curious – do people around me ever think about how they can better 
relate to me and my illnesses/disabilities?
While I feverishly search the Internet for sources of support and education about my problems, is anyone I know searching for how they can help me?
I’m fairly certain the answer is a big NO.
From what I can see, I only make people uncomfortable. That is until I make some kind of self-deprecating comment, “Well, I hope you’re not thinking of dining and dashing because I can’t run away.” Hahahahahahaha. It’s not funny but everyone laughed.
And, when I was talking with a small group of my in-laws today, I tried to bring up how I really feel. I said, “It’s really tough not knowing how things will turn out. Not knowing how disabled I may become. What my limitations may be.”
The replies:
“You can’t think about that.” Really, i can’t think about it? Well evidently I am capable of thinking about it because I am right now.
“You’ve got to stay positive.” I am positive. In fact, I am the self-proclaimed Queen of Optimism. In your mind does staying positive mean that you don’t acknowledge the reality? It’s a bit of a jump to think that something magical is going to happen and I’ll never have a problem walking again. Being positive means being proactive. I need to acknowledge the potential realities so I can make the most of my circumstances.
I don’t think anyone means any harm by saying these comments. I just wish people would take more of an interest in learning about what it is really like to have a disability and chronic illness(es) while facing the diagnosis of more. I wish they would be more proactive.
For example, my eldest sister sent me an email this week. I knew I hadn’t communicated with her for a little while but couldn’t remember the last conversation we had. In my reply to her, I just mentioned this “I can’t hide my limping and walking with a cane and I’ve found myself in situations where I have to say something even though I don’t want to. I don’t like that feeling.”
The next day, I received a reply from her. It started out with some general information about what’s going on with her and then….she wrote, “After reading about your health situation, one word keeps ringing in my head, and that is CANE. CANE? I am sorry to hear that it has come to that. There is alot of info to digest.” She went on to talk more about herself and in closing wrote, Keep in touch…I am not saying much about the health part just yet, because I need to read your email 25 times.”
She has yet to write back or call me. Yes, that makes me feel very lonely. It’s okay to cry.
I get it. She’s somewhat in shock. I get it. My in-laws don’t know what else to say. However, will someone please talk to me about how they feel about my illness/disabilities??
In case there is not existing information out there on the big world wide Internet, I will bring up the subject here.
How do you deal with a family member or friend who is having health problems or who has acquired a disability?
Most importantly, when dealing with a sick or disabled family member, acknowledge that what they are going through is very challenging. And, follow some of the advice below.
1. An “I love you and care for you” goes a really long way to a person who is sick. When a person is sick, they don’t feel like their self…they are losing a part of their self. This means they may fear that those who love them may stop loving them because they are no longer the same person they once were. Relieve some of that stress by giving extra love.
2. Don’t say “look on the bright side” or a similar statement. Ask how you can help. And, mean it. Chances are your loved one can use a lot of help right now. Imagine this – I can’t walk up and down the stairs. What’s down stairs at my house? Laundry, the pantry, all of our back-up paper supplies. I would be so happy if I had someone who could go grab me a roll of paper towels right now.
Well, this list is just the beginning with more to follow in subsequent posts.
If you are a persons who is ill or has a disability, can you share some tips I can post here on how you would like people to interact with you? Comment to this post! If you are a friend or loved one of a person who is ill or has a disability and can share advice, please comment, too!
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This one took a while to train some of my family members to accept, but others seemed to have no problem with it from the beginning: When first saying hello, allow the ‘sicko’ to tell the ‘healtho’ about their current state. For instance, “Hey, how are you doing?” “Well, today is a high pain day, but my spirits are doing alright, thanks for asking.” Then, if the pain could be briefly honored and validated with something like, “Oh, I’m sorry about your pain today, but I’m glad you’re doing well emotionally.” THEN, the crap is out of the way, the anxiety is reduced about not having clear understandings about the situation, and a somewhat normal conversation might have a chance of taking place.
I had one, close, family member who was in such bad denial about my illness that I really had to get in her face and tell her that was how we were going to handle it. I explained that that little bit of validation carries me a long way.
My close family members see what happens more regularly, so they tend to be less scared of things. I’ve noticed that the same difference between close and distant family/friends also happens when someone dies.
Susan S
I’m reading your blog with interest – thank you for writing. What a great question, do they look up how to be with chronically ill people? My own family, not so much.
Have you checked out this story from “But You Don’t Look Sick”? It’s great. I made some of my friends read it. The first link below is directly to a PDF of the story. The second link is the site.
1) http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
2) http://butyoudontlooksick.com/