Joining a support group can help you feel understood and give you a sense of belonging. It’s another strategy for living well when you are chronically ill.
How did you feel when you received your diagnosis? Alone? Confused? Afraid? I know I did. There is almost nothing more emotionally isolating than facing a disease that you have very little (if any) control over. This is true whether it’s a chronic illness that can be managed, or an acute illness that is severe and threatens your life.
I’ve faced both and the feeling is exactly the same. When I was diagnosed with cancer in 2004 I remember feeling like no one close to me understood. Of course they didn’t. How could they?! I felt exactly the same way when I was diagnosed with a rare autoimmune disease in 2018.
The truth is that we are biologically programmed to connect with other people. When we feel understood, we feel more secure. We feel a sense of belonging. And we feel empowered. These feelings are critical to our emotional well-being.
If you consider yourself to be a self-reliant, independent person you’re probably thinking (mistakenly!) that reaching out for support means that you’re not strong enough. Wrong. You ARE – and part of that strength is the strength to acknowledge that that there are a whole bunch of reasons why you need a support group.
You won’t feel alone in a support group
Connecting with others who are coping with the same condition as you are is reason enough to join a support group. That moment when you meet someone who shares your illness – and your struggles? It’s gold. He or she is a kindred spirit. I guarantee that you will feel some of the proverbial weight lifted from your shoulders.
You’ll learn coping strategies
We all have our ways of coping. And they aren’t always healthy. It’s easy to default to a bad habit or activity that distracts us from the stress of being ill. Mine? A nap. Or mindless scrolling on social media. Be honest. Those are not coping strategies – they’re escape routes that don’t lead anywhere.
I’m not suggesting you shouldn’t take a nap or enjoy some screen time, but if it becomes a habit or a replacement for naming your feelings and doing a little bit of emotional care and feeding, then it’s a problem.
One of the advantages of support groups is that participants are at various points in their journey. That means you get the benefit of some valuable lessons learned. It is comforting to know that other people feel the same way you do – and have found some effective ways of coping with their condition – physically and emotionally.
Support groups help you learn more about your condition
Guess what? Your doctor – regardless of how much expertise he or she has – does not know EVERYTHING about your disease. No one does. Chronic illnesses and autoimmune diseases are often misunderstood.
You probably have questions about certain symptoms or medication side effects that you might experience. The symptoms may seem vague or unusual, and you may not feel that they are significant enough to warrant an urgent call your physician.
Ask your support group and you’ll get a response (you’ll get lots of responses). I’ve learned that what’s been published about my disease isn’t always inclusive of some the real symptoms that I’ve experienced.
And while the support group is not a replacement for professional medical advice, you can get some temporary peace of mind before you speak with your doctor, and often will be directed to information that you hadn’t been aware of.
A good support group also has your back. On more than one occasion, a member who has posted about specific symptoms has been advised to call their doctor as soon as possible.
You can be a source of support to others
I often feel helpless (physically) because there are so many things that I can’t easily do. Because my condition (myositis) affects my muscles, I have difficulty performing everyday tasks that most people take for granted. I have to make a conscious decision about just how important it is for me to kneel down to pick something up off of the floor – because getting up is not an easy task.
There was a long stretch of time where I couldn’t go down (or up) steps alone because my muscles were too weak and I had a compromised sense of balance. How could I be of any help to anyone for anything?
When you participate in a support group, you’re giving support as well as receiving it. That was probably the biggest surprise to me. You will find that you naturally want to encourage people who are struggling and frustrated.
You will share your own insights and ways of coping, as well as share information you may have learned that others might find helpful. The seemingly simple act of acknowledging someone else’s feelings can be incredibly supportive to them. It is such a gift to be able to lift someone else up – and to thank them for lifting you up, too.
You will be inspired by others who are living well
Remember how everything seemed like a competition in high school? Were you wearing the right clothes? Did you have the right hair style? Did the popular kids talk to you? Good news – support groups AREN’T like that.
When group members share that their treatment is beginning to work, or find effective ways to manage their condition so that they are not just living but living well, we ALL celebrate. And we are all inspired, because we know that there is always a reason to be hopeful.
One of my support group members posted a before and after video. The first video was him struggling to be able to squat down and stand up again. The second video showed him repeating the task after a month of truly hard work – and he was able to do it. He was brave to share this. And we celebrated with him.
A support group is a safe place to share your feelings
Really. There is virtually nothing that you can’t share with your support group. Sure, it’s a diverse group of people. That’s the gift. Because within that diversity you know that you share something really important. You have a common ground.
Chronic illnesses and autoimmune diseases impact us in ways that we hadn’t necessarily imagined – physically and emotionally. It’s common to have questions and concerns about sexuality, relationships, the challenges of parenting when chronically sick, and the spectrum of emotions we feel – including grief.
I’m a pretty private person until I feel that I can establish trust with someone. There have been many times when I wanted to ask a question or share an observation about my disease and felt reluctant. Inevitably, someone (thank you!) broaches the topic.
I’ve listed half a dozen reasons why you should seriously consider joining a support group. I know there are more! What reasons have you discovered?
What a great post, Sandy! I agree on all points 🙂
I have started a few support groups, both locally, in person, and online, and they have been so helpful! As you say, the surprise is that you gain as much by helping others as you do by getting help.
I would add that if a group doesn’t seem to have the right tone for you, then keep looking for one that does! You want a group that is compassionate and supportive and has rules to prevent attacks or similar negative behaviors. I tend to avoid groups where there is a lot of arguing.
Many of the people we’ve met through our support groups – both in-person and online – have become close friends who have enriched our lives!
Excellent post –
Sue
New Book: Finding a New Normal: Living Your Best Life with Chronic Illness
Sue – Your advice about making sure that a group is compassionate and supportive is spot on! And like you, I have also met people on line who I have remained in contact with. It’s been so helpful to know that there are people who completely understand what it’s like to live with a chronic illness.