7 Tips for Parents with a Chronic Illness

Navigating life with a chronic condition like thyroid eye disease (TED) can be challenging. Adding children and parenting stress into the mix can make it feel like an impossible task at times. No matter where you’re at in your battle with your condition and what your personal challenges are, there are ways to try to plan for the struggles of parenting. Although each individual parent and child will have their own needs, there are some common tips for families of all shapes and sizes.

1. Find alternatives

One of the biggest frustrations of parenting with a chronic illness is the realization that you might not be able to be the parent you thought you would be. Physical limitations of your condition may prevent you from being the softball coach or from going to every piano recital. You may not be able to cook dinner every night or limit screen time as much as you would have liked. And this is all completely okay. Many parents find strength in being able to create alternatives that show just how much they care while respecting their personal limits. For example, if you can’t play catch, maybe it’s a good night for a movie, popcorn, and a pajama party on the couch. If you can’t make it to a dance performance, watching a recording afterward with your child while they give you a special encore may make them feel just as loved and appreciated. As long as you're finding ways to receive and provide joy, any alternative is worth trying.

2. Create open lines of communication

Parenting with a chronic illness is not a task you can do on your own. You will need help at times. Letting others know what’s going on and asking for help is always a good idea. This is especially true for your immediate family. Telling your spouse/partner or children what you can and can’t do, and why you need help on certain tasks may help set realistic expectations and provide opportunities for others to step up and take some of the responsibilities off of your shoulders.

3. Enlist support

There may be times when you just can’t function at the level you had hoped. When this happens, having a support system that understands what’s going on and who can step in (whether it’s a partner, friend, or caregiver), might give you the break you need to refill your tank and jump back in where you left off. Your child may even be involved in your support system, within reason. For example, if your doctor recommends that you walk around the block once a day, you might be able to make this a special activity for you and your little one to do together.

4. Make time for self-care

Although taking care of yourself may be the last thing on your mind some days, it’s important to take time for yourself when you need it. Even if it’s five minutes a day to meditate, take a hot shower, or put on real clothes, it’s critical to make sure you're taking the time to fill up yourself. You can’t pour from an empty cup when trying to take care of others.

5. Pay attention to your mental health

Along with self-care, mental health is another issue to not let fall by the wayside. Life with a chronic condition can be challenging, stressful, and scary. Feelings of anxiety and depression can creep in all the time. Being open with your healthcare provider about your mood, seeing a counselor, or even going to couples or family counseling may help you foster strong mental health and create a space for open conversation with those closest to you.

6. Be mindful of overexertion

When parenting, it’s often impossible to not overexert yourself. However, when living with a chronic condition, one instance of overexertion may lead to days of recovery. Whenever possible, make a list of important or strenuous tasks that need to be done, and try your best to spread them out over a longer period of time. For example, if you have several chores that need to be done before the weekend, you may try to plan to clean the floors on Tuesday, research school districts on Thursday, and go grocery shopping on Friday, to avoid doing too much at once. You know best what your limits are, and it’s important to listen to your body and try to follow them whenever you can.

7. Accept and plan for unpredictability of thyroid eye disease

Parenting with a chronic illness, like thyroid eye disease, is all about accepting a new normal and finding ways to embrace the unpredictability. A day when you planned to go on a big outing may be the same day your body is telling you that you shouldn’t get out of bed. If this is the case, it’s important to be realistic and reset your expectations. If you have to skip the outing today, in favor of going tomorrow, that is okay. As long as you’re open with your family about why you need to adjust and that you’re still committing to doing what they were excited about, they will understand that you still love and care for them. It may even be helpful to have a “bad day secret weapon” for use in dire situations to avoid disappointment. This could be a toy or video game stashed away that you know your child has been wanting or the offer of some extra screen time. Having a backup plan that you know your child will love may be enough to put both of your minds at ease.