“No one understands what I’m going through.”
“I feel so alone.”
“I wish I could meet someone who knows what life with FM is really like.”
The path of chronic illness can be a lonely one, but you don’t have to be alone. There are many ways for you to involve yourself with other people who are going through the same thing. FM isn’t easy to handle on the best of days, but having understanding friends on the journey with you will make your good days better and your bad days a little less bad.
When I was first diagnosed with fibromyalgia, I thought I was the only person in the world with a chronic illness. My friends and family couldn’t understand what I was going through, and I felt so alone. The day I made my first friend at an online message board was one of the happiest days of my life. Someone knew what it was like to be me! Over time, I have created my own support system: a network of caring friends who give me the encouragement and support I need to help me get through the flare-ups, medication side effects, and emotional issues of living with chronic pain. My support system has changed my life. Knowing I have friends to turn to who understand really bad days, sleepless nights, and endless doctors’ appointments has made all the difference in how I cope with FM and arthritis.
Trying to deal with FM on your own can be extremely isolating. “I felt like I was the only one who was going through this, and no one could understand what I was going through,” says Kellie Fite, who lives with fibromyalgia and chronic fatigue syndrome. Finding sympathy from healthy friends is also often a problem for people with chronic illnesses. Rachelle Skinner, another fibromyalgia patient, says that before she found a support group, “No one would believe that I was that sick."
Seeking out others with comparable health problems can keep us from feeling so misunderstood and lonely. Nobody understands the frustration and anger caused by the betrayal of your body better than someone in the same situation. When you have a support system that really relates to your problems, you know who to turn to when you are so exhausted that just getting yourself out of bed feels like too much work. These people understand because they have been there and they will be there again. They are dealing with the physical and emotional hardships of life with chronic pain, just like you.
You may even notice physical benefits associated with having friends who understand you. Feeling isolated and alone can increase stress and tighten up muscles, causing additional pain and anxiety. Once you’ve found a group of people to connect with, you may find your body relaxing as the tension of loneliness eases away. “Just knowing someone else out there feels like I do is such a help,” says fibromyalgia patient Marie Ritzel.
A support group is a fantastic resource for FM patients. It connects you with others who are being treated for FM, and provides a place to exchange information on various medications and their side effects, alternative treatment methods, and natural supplements. The suggestions offered in a support group environment are methods that have been tried in the crucible of daily pain. A support group also makes the search for a new doctor or physical therapist much easier, because you have an easy source for recommendations. Support group participants may also exchange coping strategies for dealing with the emotional side effects of having a chronic illness.
“We talk about what works and what doesn’t,” Ritzel says about the fibromyalgia support group she leads in Tillamook, Oregon. “We can ask questions and we can cry together…it is a safe place to cry about the pain.”
Local support groups may also feature speakers addressing various topics of interest: physical therapists discussing exercise programs, physicians talking about improving doctor-patient communication, or nutritionists sharing information about healthier diets.
There are numerous psychological and spiritual benefits to being part of a support group. “When I have a particularly hard day, I can write these people and they are there for me,” says Fite, a member of an online support group for women with fibromyalgia. “They are like family.” Rachelle Skinner, another support group member, notices a special bond that forms between people who live with chronic pain. “When you join a support group, you can meet people just like you and make lifelong friendships.”
Ready to start building your own support system? A good place to begin is by finding out what kinds of support groups are available in your area. The National Fibromyalgia Association has a list of support groups on its website. You may want to contact the local Arthritis Foundation chapter, your doctor’s office, physical therapy center, or hospital. Check in the newspaper, ask around, or do an internet search. There are support groups for specific illnesses, and also those that welcome people with any sort of chronic pain. Explore all of the different environments available to you and see what fits best with your life and needs.
Not into the support group environment? There are still plenty of ways to get involved with other people. Exercise classes are a great way to take care of your body and make some new friends. Most YMCAs offer classes geared toward people with health problems. Or try volunteering for an organization that raises public awareness on chronic illnesses.
If you’re already spending hours in the waiting room of your doctor’s office before an appointment, why not try starting a conversation with another patient? You may have more in common than you realize. And since most people love to talk at length about their symptoms and treatments, you’ve already got an easy conversation starter.
Are you living in a rural area, house-bound, or just don’t have the time and energy to spend on the social scene? You don’t have to go any farther than your computer for support. There are hundreds of online communities for FM patients—small groups and large ones, with members spanning the globe or located in the same area. Most online message boards are very easy to use, and usually provide a help section for those who are just getting started.
When joining an online community, be prepared to make the first move. Post a message or send an email introducing yourself. Ask questions. Respond to other people’s messages. Make friends by being one.
Online communities connect people in various parts of the world, so if you are looking for a face-to-face support system, you may want to start elsewhere. However, one of the benefits of online support is that it is always there. You can access it anywhere and anytime. When you’re having a bad day, you can let your online friends know and they may respond to your message right away, sending words of encouragement or tips on how to make yourself more comfortable.
You may have to try several different things before finding a place that feels right to you. I started out posting messages at some larger forums for people with various types of illnesses. I made a number of friends through an electronic pen-pal service, and am now a member of a smaller online support group. The women in my support group are closer to me than many of my local friends. Even though we are miles apart, the empathy, understanding, and experiences we share bind us together in a unique and deeply meaningful way.
Does the idea of building your own support system seem overwhelming or make you uncomfortable? Listen to the voices of those who have already traveled that road.
“Don’t wait one more minute to join a group,” urges Skinner. “Since joining a support group I have found the love and support I need to get through the day.”
“Take the time to do this. At first it can be awkward, but over time when you help others and they help you, you start bonding and feeling close to them,” says Fite. “It gets to a point where you feel like they are your complete support system.”
The most important advice I can offer to you in building your own support system is this: reach out. It may not be easy to create a support system for yourself, but it will definitely be worth it. Take the time. Make the effort. Get to know some new people. Try different things until you find a place where you fit in. Once you’ve built your own support system, you’ll never look back.