The experience of feeling connected to others is vital to both our physical and mental well-being; it’s often what makes life worth living. Nevertheless, it can be difficult to navigate our friendships, even as we come to terms with our own feelings of loss in living with illness. Meeting new people becomes fraught complex and unwelcome decisions. There will be challenges and disappointments, and many of us feel isolated and alone at times, wondering if even those care about us could possibly understand.
However, there are things we can do:
1. Understand and accept your changing needs, and realistically evaluate who can help you.
Chronic illness inevitably changes friendships. Some become closer, while others might fall away or become strained. Some people will surprise you by standing by you when you least expect it. Accept what people are able to give, as well as what they can’t. I have a group of friends and family I privately call my “A-team.” Those are the people I can truly count on to understand and support me. Others might still play a role in my life, but my expectations are different. When you reach out and ask for help, think about who among your circle of friends is most likely to be able to hear your request and want to support you. Don’t expect individual relationships to meet all of your needs.
2. Communicate your feelings and needs honestly.
Many of us have always prided ourselves on being self-sufficient achievers. With the onset of illness, we may have to rely on others in new ways; it can be difficult to acknowledge these needs to ourselves, let alone communicate them to others. We may feel deficient, embarrassed, or frightened; perhaps we’re afraid others will be resentful of our neediness or that they cannot understand. Realize that these fears are often unfounded. Sometimes we end up perceiving others as being uncaring simply because they cannot read our minds. A friend might welcome the chance to offer support but simply isn’t sure what to do or say. By communicating our needs, we give others the opportunity to be of assistance (which often makes them feel good too).
Keep in mind that communicating honestly requires a willingness to risk rejection or disappointment—we may not always get the response we’d like. However, as Topf points out, “…when we stay emotionally in touch with our needs, and express them clearly, without all the overlays of feeling unworthy or projecting our distrust to others, support grows and expands.”
3. Maintain a balance of friendships with other CFS/FM sufferers and those who are not sick.
Sometimes we need the comfort and understanding that only another person with CFS/FM or other chronic illness can provide. As FM sufferer and doctor Mark Pellegrino, MD, writes in Fibromyalgia: Up Close and Personal, “When people with fibromyalgia first meet each other, there is almost a magical ability to immediately open the doors that lead to our…innermost sensitivities, fears, and hopes.” We can build new friendships through CFS/FM support groups and online communities. Nevertheless, sustaining relationships with “healthy” friends and loved ones is also important. At times chronic illness can seem to take over our worlds; but having contact with those who aren’t ill helps us maintain a connection to the world beyond CFS/FM, allowing us to focus on other things and easing the monotony of coping with illness. Different friendships play various roles in our lives, just as they did before CFS/FM. Some are deep and intimate, while others revolve around a shared interest or activity. Remember that it may not be necessary for every friend to understand what living with CFS/FM is like for us.
4. Understand that others might be struggling with problems and feelings of their own.
The impact of a chronic illness like CFS/FM on our lives is so vast that at times we tend to forget that we ever had problems before we were sick! It’s helpful to remember that others have challenges and worries that have nothing to do with their feelings for us. In addition, watching a loved one struggle with illness often makes people feel helpless and uncomfortable, and they may behave in awkward ways or simply have the need to create distance. They too may experience fear, disappointment, and loss; and these emotions are often complicated by feelings of guilt for being healthy or for having needs that we may not be able to meet. Keep in mind that others’ reactions may have more to do with them than with us.
5. Resist the need to over-explain or apologize.
Living with a chronic illness involves constantly evaluating the impact that various activities might have on our pain, fatigue, and other symptoms. It often requires difficult choices about whether or not to engage in an activity that others do without a second thought. Only you can know which decisions to make in order to best manage your symptoms. If you are unable to do something or, for example, have to change plans you’ve made with friends, it’s important to communicate this, but don’t feel obligated to provide multiple explanations or apologies. Suggest an alternative plan or invite others to go ahead without you. Try to stay positive in spite of your limitations. Avoid offering long-winded details about your illness and its constraints.
6. Handle unsolicited advice with as much grace and confidence as possible.
One challenging aspect of communicating about our illness with friends or acquaintances is responding to others’ attempts to “fix” you. For those of us with CFS/FM, at times it feels like everyone we meet has a suggestion to help our pain and fatigue or a story of someone they know who was “cured.” Keep in mind that a friend may have the best intentions: it’s hard to see a loved one suffering and it’s natural for some people to want to fix it. However, try not to let such conversations make you doubt yourself or your treatment choices. FM sufferer and author, Lisa Copen, points out that while we may not be able to make everyone understand our illness, we can choose how we respond. Copen suggests responding with kindness—yet firmness—to those who offer unwanted advice or suggest remedies. She recommends acknowledging a friend’s concern, but saying something like, “I have really jumped in and done all sorts of research on treatments and the good and the bad and the side effects and consequences. I feel like I’ve made a very educated choice that I can live with for now.”
7. Provide positive feedback about things that are helpful.
Chronic illness can be devastating in so many ways, and sometimes there is nothing anyone can do to take the physical and emotional pain away. At times we may feel overwhelmed with needs that cannot possibly be met; but we should realize that sometimes we can turn to others for support. Our friends may have a genuine desire to be helpful but simply not know how. Good intentions sometimes backfire, and those who care about us may be left feeling uncertain and afraid to make things worse. It’s vital to appreciate the things our loved ones can do that are helpful. Let people know when they are doing something right. Communicate how much you love them and appreciate their support.
Most of all, remember that you are never alone. There are always people to whom you can reach out, whether they are somewhere in cyberspace or right next door. It may be someone you’ve known your whole life, or another CFS/FM sufferer you have yet to meet. While relationships might become a bit trickier, the capacity for human connection and friendship is one thing that illness simply cannot take away. It is ultimately worth the extra effort. As Joseph Addison wrote, “Friendship improves happiness, and abates misery, by doubling our joy, and dividing our grief.”