Seven Ways to Support the Newly Diagnosed
Someone I care deeply about was recently diagnosed with a chronic health problem. Though the disease is different than mine, it shares many common elements: it’s invisible, it’s currently incurable, and it impacts his health and well being on a daily basis. Watching him navigate the early stages of disease diagnosis and management took me back to my own early days of chronic illness – days full of pain and tests and appointments and uncertainty. Days in which I didn’t know what was wrong with me, didn’t know how to fix it, and had little to no expectation of what my life would look like in the coming months and years. This got me thinking: How could I, who had been close to where he is now, best support him through such a difficult time?
This question is harder to answer than we might imagine, even for those of us who deal with our own chronic conditions on a daily or near daily basis. Those who have no experience with chronic illness at all may find it nearly impossible to answer. After all, how do you be supportive without condemning, negating, or belittling your loved one’s experiences? How can you assist without smothering?
- Trust in your loved one’s experiences. You’re not going to be able to see the symptoms associated with your loved one’s condition unless they are very severe. That’s the nature of invisible illness, and it’s something that can make those of us who suffer from them feel defensive and/or alone. Trust in what your loved one tells you. If he says he is in pain, believe him. If she says she’s nauseous or dizzy, believe her. This may sound simple, but it can be one of the most challenging things to do in the long-term. It’s also one of the biggest ways you can show your support.
- Ask (the right) questions. “How are you feeling?” Is one of the most common questions asked of the chronically ill, but it is also one of the most annoying. (“Have you tried ____?” is just as bad.) The truth is your loved one probably feels awful and is tired of being reminded of it. Instead of asking a generic “how are you” question, try asking: “Is there anything I can help you with today?” “What would make you feel loved and/or cared for right now?” “Is there anything you wish you had right at this moment?” “I’m heading ____, what can I pick up for you?”
- Do your own research. Understanding breeds compassion and quells resentment, and you’ll be far more understanding if you know something about what your loved one is dealing with on a daily basis. Don’t expect your loved one to be your teacher, however. That takes a lot of energy – energy he or she doesn't have and could probably use elsewhere. Instead, find out for yourself what the condition feels like. Research what sometimes helps and what can hurt. Learn about the tests and treatments your loved one will likely undergo. Read patient forums online. You’ll be surprised at how informed you can be after just a few hours on the Internet.
- Keep a lid on the unsolicited advice. After doing all that research, you may feel the urge to step in when your loved one is doing something you feel she shouldn’t or isn’t doing something you think he should. Don’t. Unsolicited advice will only breed resentment between you. Instead, keep it to yourself. If your loved one wants your opinion, he or she will let you know. If you think he or she is the type to keep things quiet and not ask for help, you could ask something along the lines of “Would you like me to tell you what I read?” or “Would you like me to help you monitor that?”
- Step up the help. Whether it’s making dinner, picking up the kids, walking a friend’s dog, getting the groceries, or checking the mail, pick at least one thing your loved one takes care of that you can fit easily into your day or week and offer to do it for them. Bonus points for not just taking it over:Sometimes the things we hate are the very things our loved ones find relaxing.
- Join in with lifestyle changes, if possible. Managing a chronic illness often requires changes in diet and exercise and may even require your loved one to substitute some of his or her favorite activities for ones that don’t aggravate the condition. If possible, make these changes with your loved one. If she needs to move for 20-30 minutes each day, go on a nightly walk together. If he has to lower his cholesterol or cut out sugar, make healthy eating a part of your daily life together. Making the changes together will help you feel like a team.
- Don’t take it personally. Chronic illness brings with it all kinds of changes. As your loved one gets accustomed to his new life, he will likely exhibit irritability, sadness, anger, fatigue, and overall moodiness. Don’t assume those emotions are about you. Doing so will only add stress to both your lives.
When was your last migraine check-up?