Loving someone (friend, family member or partner) with a chronic illness can be challenging. Challenging, not because they are difficult to love, but because it’s not always clear or easy to provide the proper support. Additionally, being close to someone with chronic illness can be unpredictable, disappointing, confusing and sometimes frustrating.
Often times, the invisibility of their disease coupled with their consistent efforts to keep up, push through and live a “normal” life, can make it seem as though they aren’t struggling; Like they can or they should but just don’t want to or as though they don’t need accommodations, understanding, support or a little slack.
Because their needs and limitations might be difficult to understand or perhaps they may not always be clear or forthright about what they need, knowing what to do, how to respond, what to ask and how to support (when you can’t actually change the outcome of their situation or make symptoms disappear) can leave you feeling helpless and confused. Additionally, depending upon your role and relationship in each other’s lives (for example, if you hold a caregiver role), you too, might experience emotional hardship as it relates to the relationship. The emotional experiences involved with providing care can have a negative impact on anyone (regardless of mental health, capability, resilience, etc.).
Knowing and understanding your person is certainly important and there is no one way that to support a loved one. However, there are some general guidelines (and things that your chronic-illness-sufferer friends or loved ones would want you to know) that will help them to feel supported, will help you to work through the challenges that you may face in your relationship and even strengthen your relationship with your loved one overall.
Show Up and Stick Around
A person’s support system (family, friends, partner) plays a large role in their physical and mental health as well as in their ability to manage their chronic illness. When your friend or loved one is ill, show your love and support by showing up. They may often say they don’t need anything or don’t want to be with anyone and while sometimes that is true, more often than not, they are saying no because they don’t want to bring you down, too. If your friend isn’t able to join in an event or plan, spend time with them in other ways. Pick up the phone and call, send them a text, show up with a care package or even dinner and a movie.
It can be hard to know how to help or even what to say. Checking in regularly will show your friend or loved one that you care and that they are not alone. A simple “thinking of you” or “how are you feeling?” can make a chronic illness sufferer feel loved, remembered and may give them little peace of mind.
Believe Them Every Time
The nature of chronic illness is just that, chronic: Persistent, long term and recurring. And because of that, they often feel like a broken record, like they keep saying the same things and like it’s almost not believable when they say we aren’t well enough… AGAIN. BUT Chronic illness sufferers are not likely to use illness as an excuse or to their advantage. In fact, research shows that people with chronic illness work harder and are more likely to ignore symptoms and pain longer than those who aren’t living with chronic illness as a means to compensate for their limitations. So when they say we aren’t well, that they can’t do something or perhaps that they aren’t feeling up to something, believe them.
Don’t Give Up on Them
Even if they regularly decline, continue to include and invite your friends with chronic illness in plans, get togethers and social events. Chronic illness sufferers often experience an immense amount of guilt related to social relationships (among other things: work, obligations, familial relationships, intimacy, etc). Similarly, social isolation and loneliness are common problems for chronic illness sufferers. These fears and experiences of isolation and guilt, often contribute to or further exacerbate physical symptoms and contribute to mental health challenges like depression and anxiety. A mere invitation, can help someone with chronic illness feel included, loved and remembered-Which may help to keep symptoms and depression or anxiety at bay.
Do Your Research
Learn as much as you can about your loved ones illness. Find information online that might help you to understand the details of their illness and their symptoms. This might provide insight related to what your loved one is experiencing. It may also be helpful to turn to your loved one for some clarification as they are the experts in their experience. It’s okay to ask questions and to ask for clarification. Having open and honest conversations with your loved one shows that you care, that you want to understand, that you are there for them. Additionally, having open communication about illness can strengthen your relationship over all.
...don’t try to fix things or offer advice. While your intentions are good or perhaps you’ve heard of some helpful or effective strategies or even a new cutting edge treatment for “curing” or managing a particular illness, offering advice or a solution can feel incredibly frustrating for someone with a chronic illness. Remember that they are the experts in their experience. The best kind of support you can provide is to listen, to love and to be present.
Get Your Own Support
For those who share a close (and perhaps intimate) relationship with a chronic illness sufferer, talking to a therapist who can provide support, perspective and strategies for supporting loved ones with chronic illness can be incredibly beneficial. In addition, working with a therapist can help you to improve communication with your loved one, develop and strengthen boundaries and effective self-care practices, manage expectations and disappointments and decrease the symptoms of caregiver burn-out.
Respond to Declines in Invitations With Compassion
It may seem that because we have A LOT of practice and experience in declining invitations that
we’re practically professionals, but the truth is that no matter how many times we decline an invitation or bail on a plan, it’s always challenging. There’s guilt, fear, disappointment and anxiety attached to almost every “no” or “I can’t.” No matter how hard we try to listen to our bodies, to accept and love ourselves as we are, saying no always sucks (at least a little). Your response matters. Responding to declines or bail outs with loving and understanding words can make all the difference. Say things like “It’s okay, I understand and I love you” or “Don’t worry about it, I know this is hard for you” or “Can I bring you anything” or “I want to be there for you and miss you, I don’t care if we can’t make it to the event. We can do something else instead if you’re up for it.”