Giving & Receiving Care: The Challenges

Patient Expert

I get by with a little help from my friends.
-The Beatles

What does it do to a relationship if you can't storm off in a huff after a fight with your significant other because you may need to help them go to the bathroom first? And what does it do to a relationship if you feel you can't get angry at your partner because you'll need to pee in an hour and can't get your pants off without help?

This is the part we don't talk about much. The fact that sometimes when you have rheumatoid arthritis, you need help with what is called Activities of Daily Living (ADLs), which essentially boil down to having people help you with making dinner, getting a book off the top shelf and combing your hair, or pulling your pants down when you go to the bathroom. It is with the intimate things, the private things, the parts where your bits being naked physically strips you bare emotionally that you feel the dependence the most.

Giving and receiving care brings a new dynamic into a relationship, brings silences that speak loudly, changes you from being lovers and partners to being helper and helpee, bringing dependence one careless step away from control.  How do you keep your relationship intact when part of it has changed to something else?

You talk. Take nothing for granted, never assume that your partner knows what you're thinking, create a place between you where it is safe to say anything and then do -- talk about the feeling of humiliation that comes when you have to ask for help with a task you've done yourself since you were four; talk about needing time alone without worry that your partner will be stuck in bed while you're gone. You talk about how this is what they mean when they say in sickness and in health and how there is much love to be found in helping, as well as in receiving help. If necessary, you find a counselor to help you articulate the good and the bad so you don't end up resenting one another.

You compromise, finding ways to accommodate each other's needs and preferences within what is necessary when one of you helps the other. You learn to give advanced notice of needing help so it can fit smoothly into your partner's plans. From the other side of the coin, you learn to create extra room and time in what you do because it'll keep you from sighing deeply when your loved one asks for help. You learn that when one person has a chronic illness like RA, both of you have the illness, your entire family has the illness, because there is no ignoring it, no putting it on the shelf to deal with later. Whether the help needed is getting the lid off the pickle jar or taking a bath, you must find ways for each of you to keep your dignity, your independence, your sense of usefulness within the relationship. Without it, the love between you will erode.

And sometimes, it means finding outside help, even for a few hours a week, to give one person the freedom to leave without worry and the other the freedom that comes in receiving help from somebody who gets paid to do it. Of course, when funds are low because one of you is too sick to work, being able to afford outside help can be difficult. Your local city health department may be able to point you in the direction of home health care or respite resources.

Whether the relationship is between two spouses or partners, a relationship that's just starting out or one that's been solid for years, between a parent and an older child, between friends, between you and someone who gets paid to do the job, it's important to pay attention and be aware of the shifts in the relationship. Illness and disability can make you vulnerable, physically and emotionally, and can change a previously equal and independent relationship to one of dependence and power, creating the potential for abuse. If the person helping you is being rough, causes you pain, controls your actions and choices, hurts you physically, embarrasses you or in any other way abuses you emotionally, contact the National Domestic Violence Hotline. The Web site has lots of good information about what abuse is and how to get help, but remember that it's easy to check the history on a computer. If you do not feel safe at home, use a computer elsewhere, such as at your local library or call 1-800-799-SAFE (7233) or TTY 1-800-787-3224. If you are not in the US, contact your local City government for information.

You can read more of Lene's writing on The Seated View.