Helping Your Family Cope With Your Chronic Illness Diagnosis

Helping Your Family Cope With Your Chronic Illness Diagnosis

guest post from Jaime Lenae

Chronic illness doesn’t just affect your health. It can cause a widespread ripple of chaos across all aspects of your life, including your relationships. Previously healthy relationships can begin to show signs of trouble, and rocky relationships can sometimes succumb to the pressures of dealing with illness. It’s often left to you to help your family cope with your chronic illness diagnosis, even as you are struggling to cope with it yourself.

Before and after my diagnosis of Behcet’s disease, fibromyalgia, and lichen planus, I had been holding in a lot of what I’d been feeling. My relationship with my husband had become a bit strained due to a lack of communication. I was dead tired and hurting. I was worried about the future. And the one person I should have been able to lean on didn’t seem very sympathetic. 

Coaching Your Team

It wasn’t until I started seeing improvement from my medications that I realized just how little I had been opening up about how I’d been feeling. I’ve always been one to avoid dragging others down with my problems. I was afraid of pushing my husband away with constant complaining, so I downplayed things and held most of it in. 

What I didn’t understand was that I was expecting help and support, while leaving my husband in the dark. The realization finally struck me during a conversation months into my treatment. 

I casually mentioned how I had a couple of mouth ulcers, and my husband suggested I call my doctor. I told him they were tiny and I actually felt great — no sore muscles and joints, no headache, no fatigue. It was the best I’d felt in a long time. 

I’ll never forget how he paused and said, “I had no idea you felt that bad.”

We can’t hold others accountable when we don’t let them in. It can be easy to fall into a trap of trying to go on as if everything is normal. But this isn’t doing your spouse any favors. Things aren’t going to be how they used to. 

It’s up to you to take the lead on healthy communication about your illness. Keep your spouse updated on your feelings and your frustrations. Mind-readers don’t exist. When they ask what’s wrong, don’t tell them it’s nothing. Ask for help when you need it. Grieve with each other. Actively work together on solutions.

If you or your spouse are struggling, or you’re still not getting the support you need, check out this list of helpful resources from the AARDA.

What Do the Kids Need to Know? 

Just as you shouldn’t leave your spouse in the dark, your children will need to know what’s going on. How much you reveal and what words you’ll use will depend on the ages and maturity levels of your children. 

Before explaining anything to your children, give yourself some time to process the news yourself. Many children can be quite sensitive to the emotions of others. When you speak to them, it will help if you’re as calm as possible. 

For small children, it can be as simple as telling them you’re sick, sort of like when they have a cold or a tummy ache. Only this illness isn’t going to go away the way a cold does. You can tell them that some days you’ll have more energy and can play more, while others, you’ll need lots more rest. 

For older children and teens, you can explain a little more thoroughly. You don’t have to go into great detail, but be sure to listen if they have questions and answer as honestly as you can, including when you don’t have an answer. 

Enlist the help of your children, and do tasks together at home. Allow them to handle some chores on their own, even if they don’t do a perfect job. Tell them how proud you are of them and how helpful they are.

Plan activities you can do with your kids on good days and bad days. When they ask to do something that you just don’t have the energy for, offer other ways you can spend time together, “Today is a rough day for me, let’s do (activity) instead. How does that sound?”

For ideas on how to keep your kids busy on rough days, check out this list of 20 fun activities.

Finding Balance 

When you live with a chronic illness, it’s more important than ever to prioritize your health. You might not be able to do it all. This can be a tough realization for most people, especially if you were previously very healthy and active.

It’s important to decide on the most valuable activities in your life. The things that are most deserving of your energy. These things will be different for everyone. 

Also consider what activities your family values most. Do your children look forward to going to the park more than anything? Does your spouse value your weekly date night and consider it vital to the health of your relationship?

Working together to ensure that everyone feels loved and valued can reduce friction and create balance in your household. 

You shouldn’t make promises that you’ll be able to do these things — as we all know, every day with illness is unpredictable — but knowing what you and your family value most, gives you the power to conserve your energy for the important things. Enlist your family’s help with other tasks so you can make lots of memories together. 

It’s also a good idea for you and your loved ones to take time for yourselves. If your spouse has a favorite hobby, encourage them to do it. It’s important for everyone to keep a sense of identity as an individual. 

Related: Tips for Pacing When You Have Chronic Illness

Conclusion

Communication will be more important than ever once chronic illness hits your family. It’s normal to feel angry and to grieve the life you once had, but together you can face this new life and become even stronger than before. 

Be kind to yourself and be honest with your loved ones. Make each other a priority. And save your energy for the things that really matter. Don’t let chronic illness define you — let it bring you closer to the ones you love most.

Related Posts:

• Four Things About Chronic Illness My Family Needed To Know
• Handling the daily challenges of being a parent with chronic illness
• 5 Ways to Show Your love, even when you feel like crap.
• The Impact of Chronic Illness on Marriage

Jaime is a freelance writer and artist living in South Louisiana. She’s a Spoonie and Behcet’s warrior who believes in building a life and business you love. For more stories, check her out on Medium. You can also follow her on Facebook and Twitter.