Does living with chronic illness leave you feeling like no one understands? Feeling alone and misunderstood is especially painful when it’s your spouse or any member of your family who just doesn’t seem to “get” it.
Do you find yourself muttering, “Why do I have to explain the same things over and over again?”
Or, “Why should I have to repeat why I need it hotter (or colder) in the room than others, why I need help carrying the groceries into the house when I did it yesterday or why I really do need that expensive ergonomic chair for my desk so I can work for longer than 15 minutes without pain?”
If you’re shaking your head yes, then I suggest that you stop, take a look inside and notice. As you make these requests of others, is there some part that is angry? Is it angry that you need this special attention? Maybe you worry that the other person doesn’t feel like helping — or doesn’t believe that you’re trying hard enough?
I was discussing this isolation and frustration with a client today. She puts a lot of emotional energy into fighting the fact that she lives with a debilitating disease that doesn’t get better. She’s so busy waiting for this to be over that it’s hard for her to get on with living her life.
In this call, she was deeply frustrated that her husband thinks she’s not trying hard enough to get better. He believes she’s giving in when she rests rather than fighting harder. Nothing she says changes his idea. She thinks if he accepted her illness, she’d be better able to accept it herself.
I suggested that she shift her focus. She’s unable to change his beliefs but she’s seen that he is willing to help. Maybe she can accept that form of support, even if he doesn’t understand or agree with everything she does.
This is a key distinction. Asking for what you need can be very hard whether it’s with those you love, friends or co-workers. Especially if you feel angry or sad that you need that help because of chronic illness.
You can’t expect that others will really understand what living with chronic illness is like for you. But you can expect, in a relationship of mutual respect, to get the support you need.
When you ask for help, are you getting what you need?
Rosalind says
Thank you for your wonderful words. Carrie
Ricky Buchanan says
I used to get very angry at people who didn’t understand and accept the limitations I had, and as you said as the years went by and I became more accepting of myself it did become a lot less important what others thought about me. Now, 15 years after I first got sick, I’m pretty much capable of saying “I don’t care if you don’t believe me, I still need X” and standing up for myself when needed – of course that takes a lot of energy and surrounding myself with supportive people to begin with is a lot better! But even for somebody who’s bedridden I sometimes have to deal with people who aren’t supportive or aren’t understanding and being able to do it is important.
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Rosalind says
I’m always impressed by your clarity, RIcky. It’s not easy saying “I need this” and it is draining. Good points!
Rebecca says
It feels wonderful to read of others with the same challenges and frustrations. My partner and I were in a nasty car accident nearly three years ago. He suffered many physical injuries that required several scary surgeries. I suffered a closed head injury, a compression fracture in my back, and various other “minor” injuries. I still suffer from post-concussive symptoms and some physical aches and pains.
He does not understand anything he can’t see. He can’t understand why I have any difficulties at all; why I need the volume turned down; why I like to have notepads around so I can jot things down before they’re forgotten; why my back often hurts and I sometimes have to walk slowly; why I have such a low tolerance for stress; why I cry easily; why I’m often depressed with no desire to go on; why I’m often fearful that my future will always be this way given that I haven’t seen any improvements in my memory, concentration, word-finding, or multi-tasking skills (I’m an editor, so these are relevant to my livelihood).
I can’t understand why I need to keep asking him for the same help (please turn the volume down, please don’t call me messy because I like to keep a pen and paper close at hand, etc.).
Your advice in the article is good. When I think about it, he often does respond by helping me when I calmly, clearly, and coherently ask for help. The trick is to be able to do that; as we know, it’s not easy to be calm when in pain (physical or emotional). He generaly disregards anything I say unless it comes out in a rational request that his ever-so-logical mind can comprehend. When I’m not speaking his language, I’m on my own.
Yes, I’m angry and resentful that this is the new me and that I have to ask for help. I’m still getting to know my new brain, its capabilities and its limits. I resent making far less money than I used to make before the accident, with little chance (it seems to me) of career advancement anymore. And I know I could be wrong. I’m open to another (perhaps more suitable) career path, if only the universe would give me an inkling what that might be.
I do count my blessings and am grateful that I am still high-functioning in many ways. As I always used to enjoy hearing on Dr. Laura Schlessinger’s radio show years ago: Gratitude is an attitude. Sometimes I remember to be grateful—but I think that’s a human thing to forget (i.e., I can’t blame that on my head getting whacked!).
I pray for help in staying open to the cosmos so that I can be led into joyful work and joyful living.
Thank you for your words. 🙂
Mobile Hard Drive says
i like those ergonomic chairs that uses leather covers-`”