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How Parents Can Support an Adult Child With a Disability or Chronic Illness

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I find there are a lot of posts on how parents feel about their children’s disabilities and what has helped them through learning how to cope with this unexpected challenge. This, my friends, is amazing. It’s always heartwarming to see the community coming together to offer support to one another. Caregivers sometimes go unheard and it fills me with joy to see there is help out there.

As a disabled individual, I wanted to offer insight into how we feel on the other end — what we may experience and how we perceive our caregivers experience it.

I was diagnosed with a traumatic brain injury, fibromyalgia, and TMJ disorder. It was truly a confusing time. I’ve found no matter what you are diagnosed with, or how old you are when it happens, many of us go through similar stages. You go from living your whole life a certain way to having it drastically changed, and that not only affects you, but also your family, especially your parents/caregivers. I was lucky to have unbelievably supportive parents, but I know I wasn’t the only one living through the experience. It was probably just as hard for them, if not harder at times.

Here are a few things to remember for survivors and caregivers alike:

1. You are our number one support system.

No pressure, though. We don’t need you to do everything in your power to make it better, no matter how badly you want to do that. We already know you’re trying. We just need you to listen and “kiss our booboos.” Sometimes just having our parent(s) around in the same room is the biggest consolation. Even if we seem annoyed, having your support, no matter what form it comes in, can help us feel better.

2. We may think you know everything.

“You’re mom and/or dad. You know everything. Fix it.”  We need you and often believe you know best for us, even if it’s unrealistic and we don’t act like it sometimes. Like I said, no pressure.

3. We may think you don’t know what you’re talking about because you haven’t been through it.

Some days we will probably scream and storm off (provided we can). We’ll fight and argue. Sometimes we know you really don’t know what the answer is and you’re just throwing generic solutions our way. Although we understand your sentiment and appreciate the gesture, sometimes we just need you to understand it is OK to not have all the answers. If we tell you a strategy doesn’t work, or it’s not what we need at the moment, we need you to respect that. Sometimes saying you don’t know what to do in a certain situation and that you’ll be supportive in whatever treatment we want to try is more than enough. It’s very hard when parents try to force their need for us to be better. We’re both learning, and sometimes it’s important to let the process teach us.

4. We’re afraid to tell you everything.

While it may be heartbreaking to hear this, it is very important to consider. Sometimes children don’t tell their parents everything they are going through, because they are afraid of hurting their parents’ feelings. It’s a natural human reaction. If a child senses a strong negative reaction to a previous symptom or ailment, it might cause the child to withhold information. It’s imperative for you to tell us  it’s OK that we’re experiencing what we’re experiencing. The reassurance is important for both us and you, believe it or not. This form of support goes a long way, especially when the condition is not curable or treatable.

5. Give us space and time to rest. 

Physical, emotional, and mental rest is vital to recovery. Pushing us to exercise or get back on the wagon when we’re overwhelmed is more detrimental in the long run. The best part? You get to rest when we get time to rest. Bonus!

Know that your support and understanding is greatly appreciated even on days when we behave like we hate you, or you hate us. That’s not us talking, that’s our circumstance. We see you. We see what you do for us, and it makes all the difference in the world. We may also just really want to sleep.

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Getty image by GPointMedia.


Originally published: January 10, 2018
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