“Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
An’ if I stay it will be double
So come on and let me know” (The Clash, album Combat Rock -1982)
I’ve been going to various support group meetings lately in preparation of my next article for the Pacific NW Chapter’s (LFA) newsletter ” In The Lupe! ” . I have to admit it was also for personal reasons that I decided to dive back into exploring where support group participation fits, or doesn’t fit, for me.
Generally speaking, support groups are defined as either professionally-led, therapeutic and focused groups with limited membership or peer-led, open groups focusing on self-help and outreach. The ones I have been attending around here are peer-led groups for chronic illnesses and not specifically for lupus.
When I was first diagnosed, my rheumatologist recommended that I join a peer-led support group to learn more about lupus. Of course, he wasn’t able to provide me with any answers regarding the where, when, who or even why questions I had…he only suggested that I go. He’s a great doctor, don’t get me wrong. It’s just that at the moment of ‘impact’ when I’m told my life has changed, it would’ve been nice of him to have offered a little bit more. It was clear that our relationship was new, because his suggestion didn’t resemble at all how I coped with trauma or crisis at that time. Sitting in a room with a bunch of sick people who I didn’t know was supposed to somehow help me? I remember shaking my head and politely declining to go. Besides, I didn’t seem as sick as other people were and didn’t think I needed to go. In reality, I was much more ill than I realized at the time.
There is plenty of research available on how beneficial groups are in offering us emotional and practical social support. Benefits from social support are not simply the information or kind words that we receive, though. The benefits come out of the interaction that occurs between people, thus creating a reciprocity, or exchange, in the giving and receiving of support. How we receive and the quality of it is important, but it is even more important to understand whether we personally believe we will receive support and whether or not we actually do. Support isn’t always the beneficial or positive experience we sometimes think it is, either – it can also be harmful or negative. These ‘negative’ experiences are usually the result of us expecting support and not getting what we need, making the sources of support we seek out vital in creating a positive experience.
Participating in a support group puts us in a physical space that forces us to step outside of what we know as ‘comfortable’. You may not want to take on more discomfort if it isn’t necessary. However, when we reach some plateaus in our symptoms or confidence, we can resist building new strengths and skills. Stepping into an unfamiliar situation or being among people we don’t know makes us question whether or not we will receive the support we’re looking for. The relationship we have with ourselves is much easier to trust in than a perfect stranger. Risking to invest in or build a new connection is usually at the heart of our resistance to participate.
My initial resistance wasn’t simply a matter of not being as sick as the others – really. It was whether I felt I could take on trusting someone with all that I was going through. When I am confronted with a crisis, I tend go inward. In the beginning, I wanted some control in how much risk I was putting out there and so I decided that focusing on myself alone was where I felt strongest. Eventually, my doctor saw how strongly I felt about that and praised my determination to do what was best for me. Although a thriving support group is dependent on participation, regular attendance may not be as supportive to you as it is for another person. However, taking part in a group from time to time offers you social support that you simply are unable to receive in any other social setting.
I understand today just how valuable social support group participation can be, both through my personal experience and professional research. I no longer resist the idea of attending groups believing they don’t offer me anything I can use. Instead, I believe stepping into a group and outside my comfort zone offers me an opportunity to participate in a process, creating a different sense of support whenever I need a little boost in living with illness. Here are three suggestions I have if you still aren’t sure whether a support group is for you:
Consider your timing. Personally, I wouldn’t recommend attending a support group immediately after diagnosis simply because the introduction to lupus isn’t an easy one…usually. As research shows in trauma counseling, some time to ‘stabilize’ before talking about things is more beneficial to the healing process. This is a good time to focus on you and your health to gain some balance by building your treatment team and strategy. Seek out those individuals in your support network who can at least offer what you feel you need to get to there, such as a good listener, social and exercise buddies, etc. Also, this is a good time to seek out books that ‘speak’ to you in a clear format, reliable content, appealing style and address similar goals. Some doctors recommend waiting to explore the internet. If you do choose to visit websites, blogs, message boards and social networks, be careful and always check with your medical provider before initiating anything new.
Here in Oregon, there are few lupus support groups to choose from. In the beginning, you are needing to focus on managing your health and I have found that attending support groups for illnesses such as arthritis, scleroderma, or other illnesses that have an autoimmune focus are just as effective simply because we all share similar challenges, medications, physicians (rheumatologists). Even though fibro isn’t technically an ‘autoimmune disease’, many people with lupus also have fibro and their groups can offer good support, too. If you are somewhere that offers more than one lupus group, you have more options to find the right group that works best for you. Let’s face it, being in a group is a complicated process and the goal is for everyone to believe they will be supported. Find a group that motivates, listens and encourages you to live well.
Finally, I strongly recommend that newly-diagnosed patients, or people considering support groups as a management strategy, first take part in a chronic illness workshop . These classes cover the primary issues, offer clear strategies and reliable resources that are beneficial in gaining some stability with your illness. I found that attending a workshop this year didn’t offer me much in new information, but definitely reinforced those basics allowing me a chance to evaluate my current management strategies. It also introduces you to living with illness less ‘public’ exposure emotionally through a smaller groups.
My next LFA article will cover the individual decision process, what my research has to say about groups here in Oregon and what general things to look for in a support group. Here, I can sum it up by using the song lyrics performed by a group who also offers a very fitting description of the participation decision itself: The Clash~
If we stay (to ourselves) believing we can handle lupus alone, we are doubling our challenges in trying to remain ‘normal’ burdening ourselves further. The very defensiveness we harbor through refusal, denial, persistence, anger or independence tells our over-reactive immune systems what? “Fight“. I don’t suggest waving the white flag, but I do recommend that you ask yourself “What am I really fighting and why aren’t I calling in reinforcements perched to help?” They are waiting to hear from you, but you have to send them the signal. Regarding groups, “What is the risk/are the risks that keep me from going?”
If we go (to a lupus support group), then there will be trouble for us initially by moving into territory we already know to be difficult: living with illness and what it does to us emotionally. Although a good support group will incorporate many different aspects to the coping process rather than just the emotional components, even those of us Rocks of Gibraltars need to nurture those needs…whether we want to admit them or not. Simply being in a room with others who share a life with illness affects us more deeply than we know. It isn’t about being like the others or even uttering a word while we’re there. It’s about being somewhere without needing to explain ourselves.
The only person who can tell you whether you should go or whether you should stay is the best person to answer the question – you. Support groups can offer you valuable, unique benefits – the only thing you may be risking is merely an opportunity to sing a new tune.
