> Skip repeated content

Getting What You Want and Need When Living with Rheumatoid Arthritis

Summary of a presentation at the Early RA Support and Education Program at Hospital for Special Surgery

Joan Westreich, LCSW-R
Social Work Coordinator, Early Arthritis Initiative, Hospital for Special Surgery

Introduction

A recent diagnosis of rheumatoid arthritis (RA) may make your world seem suddenly more complicated. At the same time that you’re trying to understand the possible impact a chronic (ongoing) illness will have on your life, work and relationships, many questions come up about treatments and medications. Though each person is different – one size most certainly doesn’t fit all – it is generally understood that good support can help you adapt to and thrive with RA. This summary aims to help both people with RA and their loved ones learn how to support one another in the face of a chronic disease.

Support is about relationships. In principle, one person acts to benefit another person. Ideally, loved ones of the person with RA will attempt to understand that person's lived experience and feelings. Providing support isn’t a static situation or for that matter, a one-way street. Today your spouse or friend may listen to your concerns about managing your RA. Tomorrow, you may be in the one offering help and understanding of their challenges.

There are many types of support that may be useful. It could be physical support, such as help with housework or chores, but emotional support – expressed as caring, love and empathy (that is, trying to put yourself in another person’s shoes) – is also meaningful. Letting a loved one who has RA know that you’re trying to understand what they’re going through helps them feel like they have a partner, a collaborator who can handle their feelings.

But sometimes, well-meaning (or not so well-meaning) people may offer "support" that is actually unhelpful and unwelcome. Providing unsolicited advice to a person with RA, for example, is often ill-advised, even if well-intended.

Benefits of Support

A number of researchers have found that positive or helpful support from close friends and family leads to lower levels of depression in the person with RA. At the same time, problematic support – that is, actions by loved ones that the person with RA experiences as non-supportive or unhelpful – can lead to increased depression. The good news is that problematic support does not cancel out the benefits of positive support. (Revenson, et al, 1991). In other words, people with RA should embrace the support that works for them and shed the rest. To quote the Rolling Stones:

You can't always get what you want ...
But if you try sometime, you just might find you get what you need.

Positive Support

Positive support from family, friends and others may be a "buffer" that softens the stress of living with an illness. This support may take many forms. It could include help with household chores, errands or tasks. A friend of a person with RA may also do research and find information on where to receive treatment, or on support groups or transportation options. In the workplace, reasonable accommodations such as the possibility of working from home could have a big impact on your ability to be successful at your job.

Meaningful support is also provided under the general category of acceptance. People with RA appreciate those in their world who are empathic, that is, who make an effort to understand what it is like to live with RA. Curiosity and collaboration are important features of positive and "attuned" support (that is, support that takes into account the specific needs of a person with RA). They often lead to a better understanding of what the person with RA is experiencing.

The reasoning behind providing support to a person with RA is clear: Positive support helps in every way! As with medical treatment for RA, support is especially effective when it is attuned to the person with RA. This is because positive, attuned support has an impact on depression, anxiety and feelings of isolation. And who wouldn’t want to address these states early, and possibly prevent certain feelings from hardening or getting worse?

Support groups can provide an especially effective way to receive the emotional support and information you need to help cope with and manage your RA. Even people with good personal support networks can benefit from meeting with others who share similar experiences and the daily challenges of living with RA. For those whose personal networks don’t meet their needs, a support group can be an invaluable resource. Group members typically describe feeling less alone and anxious about managing their RA when they know others who are coping with a similar situation. They also welcome the opportunity to share information and strategies with like-minded people. Sometimes, a person with RA may also find it helpful to meet with a social worker/psychotherapist to talk about issues that may be getting in the way of effectively managing RA, and to help find new strategies for coping.

Problematic Support

As with positive support, the idea of what is "negative" is subjective. To some people with RA, any attention is welcome. To others, a single insensitive comment from a friend could spoil all earlier supportive comments and actions. Negative support from people one cares about has a way of leaving one feeling alone, isolated and misunderstood. Unsolicited advice and judgmental attitudes are generally not well-received. Nor is a "misfired compliment." An example of this is telling a person with RA who just mentioned how exhausted she is that she looks too good or is too young to be so tired. Remember: The person living with RA is the true expert of their experience!

How Do You Define Support?

The bottom line is that it’s personal, and can be complicated. This is the case especially if you have mixed feelings about needing support. And who doesn't sometimes feel a push-pull about asking for help or even a hug?

To try to understand what "support" means to you, you may want to ask yourself the following questions:
What do I consider good support?

  • Is less than perfect support better than no support?
  • What are my internal obstacles to getting the support I want and need?
  • What are my external obstacles to getting the support I want and need?

These questions may be difficult for you to answer at first. It takes time to reflect on this. The following general goals will be useful:

  • To have your feelings and experience seen and heard.
  • To feel safe to discuss your thoughts and feelings with important people in your life.
  • To receive the appropriate amount of empathy and support – while maintaining your sense of independence.

Sources of Social Support

Though each person may prefer or welcome support from certain people and institutions over others, below are some important sources of support. Where do you turn for support?

  • Family
  • Friends
  • Spiritual communities/God
  • Coworkers
  • Physician
  • Interdisciplinary medical team
  • Support group
  • Psychotherapist

Barriers to Support

For the person with RA, getting the support you want isn’t just about the people in your life doing right by you. Often, your friends, family and colleagues won’t actually know what you need. Consider the possibility that you may be sending confusing mixed messages. Sometimes even the most caring and well-meaning loved ones will stop trying to help because they fear causing an injury or insult. That is why it may be helpful to think about the internal as well as external factors that may get in the way of getting your needs met. Some things to consider:

Internal Factors

Have you thought about what it means to you to be a person with RA? Has having RA had an impact on how you see yourself or your sense of who you are? Has your sense of identity shifted, and could that affect who you choose to deal with and why? Maybe you’re someone who is fiercely independent. Does living with RA and sometimes needing a friend to vent to or help with tasks bring up uncomfortable feelings of dependence?

And we mustn’t forget the emotional heavy hitters of guilt and trust. A parent with RA, for instance, may feel guilty about asking her children to take on more responsibility at home, or about no longer being able to volunteer to chaperone school trips. Who you trust and why, how you deal with betrayal or disappointment, all enter into the picture. Your personal history of trust – that is, whether placing trust in someone has been rewarding or disappointing – will strongly influence how and whether you reach out for, or are truly open to receiving, support from others.

External Factors

But it’s not all about you. Many of the barriers to receiving support are outside of your control. Even well-meaning people in your life may be influenced by their own fear, ignorance or feelings of helplessness. They may not know how to ask what’s going on with you or whether you need someone to listen, or maybe to help. Also, different people choose to rely on different sources for support. For some, talking about personal matters always stays in the family. A person with this approach may not realize that you might appreciate or welcome a discussion about how you’re managing your RA. For others, their faith or belief in God provide what they need when dealing with difficult situations. And they may think that the same is true for you, whether it is or is not. Still others believe in asking for support only when their personal efforts have been exhausted. In other words, how one offers or receives support is highly personal and is influenced by many internal and external factors.

A Final Word

You are the expert on what you want and need. Give some thought to your internal and external resources, and identify who could help make living with RA easier for you. Then reach out to these resources, and ask for what you need. Keeping in mind that even well-meaning loved ones and others may not be able to identify your needs, actively collaborate with your support network of partners, family members, friends, coworkers and religious communities to get what you need. If you find that your current networks don’t meet your needs for emotional and concrete support, it may be time to develop new avenues of support. Doing so will be good for your health!

Reference:

Revenson, TA, KM Schiaffino, SD Majerovitz, and A Gibofsky. "Social Support As a Double-Edged Sword: the Relation of Positive and Problematic Support to Depression Among Rheumatoid Arthritis Patients." Social Science & Medicine (1982). 33.7 (1991): 807-13.
 

Need Help Finding a Physician?

Call us toll-free at:
+1.877.606.1555

Related Content

Conditions & Treatments

adult child
Select A Body Part
Conditions: Adult head Conditions: Adult spine Conditions: Adult shoulder Conditions: Adult elbow Conditions: Adult hand Conditions: Adult hip Conditions: Adult knee Conditions: Adult ankle Conditions: Adult head Conditions: Adult full body Conditions: Child spine Conditions: Child elbow Conditions: Child hip Conditions: Child hand Conditions: Child knee Conditions: Child ankle Conditions: Child full body


Conditions A-Z
A B C D E F G H I
J K L M N O P Q R
S T U V W X Y Z
SEE ALL