How to Actually Be Supportive When Someone You Care for Is Chronically Ill
“But you don’t look sick.”
Sound familiar? That one is everywhere. How about:
“My friend had the same problem. Her doctor put her on a new sleep medicine and now she’s fine. That’s all you need.”
“I bet if you lost some weight you’d be fine. It’s hard carrying around all that extra.”
“Everybody is tired. You just have to deal with it better.”
“You know what you’re problem is? You have no idea how hard other people have it.”
“Move! It’s that place you live. It’s sucking the life out of you.”
These comments, though often well meaning, often only frustrate and shut down the recipient. While these comments seem innocent or helpful, they are ones that someone who is chronically ill hears. A lot. And often times it can be very hurtful to have someone who is close to you not only doubt your symptoms, but use a brand of ‘tough love’ that does just the opposite of helping the patient.
Where's The Proof?
With many illnesses, there aren’t obvious outward signs. Or, there are but without a firm diagnosis of a well known condition, these signs can sometimes be disregarded or overlooked. There isn’t a blood test for some disorders, like Chronic Fatigue Syndrome or Fibromyalgia. It doesn’t help that even today some doctors have trouble accepting the validity of them. Doctors like to see cold, hard proof of something and when that isn’t there it’s a little hard to believe. All of us can understand that, and yet many of us have some kind of religious faith in something we cannot substantiate.
For years my family had trouble accepting that I was sick. Despite seeing me struggle to walk and use canes, they still believed (and didn’t hesitate to voice) that if I just did this or that more, it would improve. It wasn’t until I spent a significant amount of time in a wheelchair that phrases like what you read above stopped coming. And, my family became supportive when I was put on chemotherapy not for cancer, but for an autoimmune condition.
It took a wheelchair and a big, frightening prescription for my family to fully accept that my health was fragile and not too great.
Not everyone ends up in a wheelchair, and not everyone ends up with a weekly dose of a chemotherapeutic drug. And, no one deserves to feel bad or disrespected because of their condition. Chronic illness patients are very likely already battling depression and support that isn’t actually support doesn’t help.
What Kind of Support Does Help?
That’s a great question. There are a lot of ways you can help a chronic pain sufferer, or anyone that deals with a chronic condition. First, learn about the condition if they are open to sharing. Those who struggle with chronic conditions often educate themselves. Though this could be intimidating to some doctors, like anyone else those who contend with a chronic illness want to understand what’s going on with their body. Having a frank, open discussion with the patient in your life can be very enlightening. You can also research on your own.
Also, instead of telling ways you want to help them, ask. Many autoimmune illnesses can affect mobility, so offering to go to the grocery store could mean the world to them. Returning library books, paying bills and doing small errands may save them an entire day of exhaustion and pain. Dusting, doing the dishes, or preparing a meal may seem like a small thing, but if someone doesn’t have use of their hands (rheumatoid arthritis, even if the deformities aren’t obvious, can make using your hands very painful) these tasks are invaluable. And, asking also shows that you care. Sometimes just knowing that someone knows you’re still there and is willing to help you is the bright point in someone’s day.
Emotional support is just as important. As I stated above, chronic pain patients, and any chronic condition, can take a toll on you emotionally. Think back to the last time you had the flu and how miserable and frustrated you were when you couldn’t do the things you wanted. Now picture that every day for five years. Depression is an expected result of any chronic illness because the patient has to come to grips with it, and learn to live with a new, (and likely ever changing,) definition of normal. Sometimes, someone with a chronic condition just needs to know that they aren’t alone in dealing with it and there’s someone to help carry the weight of being chronically ill.
When it comes down to it, it’s important to ask yourself how you would feel in that position. Would you prefer for someone to ask you how they can help, or tell you what they’ll do to help you, even if that isn’t what you need?
It’s okay! Being supportive of someone who is chronically ill is stressful. You have to reevaluate your approach to them as a person in addition to accepting that there may be limitations on them that hadn’t been there before. You may have to change your regular schedule to become a caregiver or learn a new skill set to best help a primary caregiver. Being part of someone’s support group isn’t easy.
In fact, it’s very hard and stressful.
There are a lot of resources for caregivers and techniques for de-stressing. When you’re stressed, it can be difficult to be supportive of anyone or anything. These links contain tips to help de-stress as well as some resources for caregivers.
Quick Stress Relief (helpguide.org)
Caregiving At Home: A Guide to Community Resources (caregiver.org)
General Caregiving (caregiving.org)