How to Get Support for Chronic Illness when Your Family Lives Far Away
Cathy Kramer | Aug 30, 2017
Family members are often the people we immediately turn to when life is not treating us well. They provide a shoulder to lean on and are often at the top of our list when we need help. With a diagnosis of a chronic illness such as rheumatoid arthritis (RA), a supportive family takes on a whole new role. But how can family give support when they live far away?
Find a supportive family member
Having a go-to person in the family with whom you can share the ups and downs of chronic illness can be a true gift. Along with being a source of comfort and a shoulder to lean on, a supportive family member can be the spokesperson for you when you don’t have the energy or desire to share your story over and over again.
Share appointment dates
Sharing doctor appointment dates is a great way to let your family feel involved in your treatment, especially when they live far away. Plus, receiving a text message before or after an appointment letting you know positive vibes are being sent can be one of the best feelings.
Ask questions raised by family at appointments
Chronic illness and all that it entails is not only new for you, but also for your family. Just like you, they have a lot of questions. Listen to their questions — they may have some you have not thought about. Don’t forget to report back to them what answers you find out from your rheumatologist or your own research.
Share appointment updates
Decide on a way that works for you to communicate appointment updates. After a draining appointment, it might be a simple text saying: “Need to rest. Details coming.” It could be an email spelling out details of your appointment, or maybe it’s calling your support person, sharing the nitty gritty of the appointment and asking him/her to share with others. Sometimes, you may need to talk more and want to call several family members who provide support to you in various ways.
Educate your family about your condition
Chronic illness is like an onion. The longer you have it, the more layers of information you peel away as you discover what it has in store for you. You don’t want to overwhelm your family, but sharing articles, blogs, or snippets of information can be helpful to them and also for you.
Living far way can be an easy reason to avoid sharing about what is happening to your body, but letting family members know how things are going will prevent shock the next time they see you. They need to understand your energy levels may drop at any time and it needs to be a consideration when planning visits. Remember, they have not seen the day-to-day existence of your condition and may not understand exactly what is happening to your body unless it is explained.
Receiving help is often perceived as giving in to RA — letting it win. However, I believe that accepting help takes strength. Families want to show their love for you and help ease your pain. When they visit, let them clean the refrigerator, take the kids out for the day, or make dinner. Don’t be afraid to tell them what you need.
Make a list of ways they can help even while they’re far away — gift cards to grocery stores, a food delivery company, a massage, or even a cleaning company.
Vulnerability is often seen as a weakness, but when family lives far away, it is so important. Vulnerability allows us to connect and be genuine with our feelings. When family members can’t see the day-to-day pain and upset in our lives, allowing ourselves to be vulnerable to meltdowns, sharing of fears, and worries about long term prognosis is often the only way they can begin to comprehend how our lives are changing.
Take good care of yourself
When family is not physically nearby, it is more important than ever to take care of yourself. Take naps when your kids do, let the house go a little or hire a cleaning service if possible, and make meals on good days and freeze them. Make self-care a priority.
Find local support
As much as possible, include your family in your journey with chronic illness, but make sure you also find local support. There will be days that you need to be with others or need to ask for immediate help. Some days you may not feel like explaining how you feel — you just want people to see that you are in pain and need help. This is where local friends and neighbors come in handy.
Ask for help
Family can be a wonderful source of support when chronic illness is a part of your everyday life. When family lives far away, it often takes a little extra effort to make sure they know how you feel and what you need. Show vulnerability. Show strength by asking for help. Show compassion toward their fears. Then let them love you and take care of you the best they can from afar.