Tuesday, January 5, 2016

Communication is Key with Chronic Pain and Illness

As published on Pain News Network (www.painnewsnetwork.org) on January 5, 2015

Have you ever felt like the people in your life have no idea what you are going through?  Like they just don’t get it?

Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore. 

Your husband doesn’t understand why some nights you just don’t want to be touched. 

Your parents don’t get why you can’t do 10 things per day like you used to.

The truth is, unless it happens to them, your loved ones will never fully understand what you are going through.  And you can’t expect them to.  There are some things you can do however to try and ease some of your frustrations.  In my opinion, communication is key.  And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.
It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers. 

Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with.  It may be the one activity you can do without pain and it may help with your sense of purpose.

Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion.  But you haven’t told them yet because you don’t want to change their way of life on account of you.

How are the people in your life supposed to know these things unless you tell them?

Or maybe you have tried to communicate these things and they just don’t get it.  What do you do then?
The first step is to find the right time to communicate.  Over drinks in a loud bar or right before bed when everyone is tired may not be the best time.  Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together.  Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.
Next, if needed, educate them a little on your condition and how it affects you.  You may be surprised by how little people know about chronic illnesses, even those closest to you.  They may understand the basics about your condition, but not enough to help you in the way you need them to.  They may not understand how dramatically life has changed for you or how much you struggle.

Finally, talk to them about how they can support you.  Tell them what you want from them and what you need from them.  Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently. 

For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own.  It gives me a sense of purpose and makes me feel like I am accomplishing something.  Instead, I would really like for you to help more with the dishes.  That is more difficult for me to do and it really hurts.”

It may take more than one conversation for your friends and loved ones to really begin making the changes you would like.  But if you keep gently reminding them what you want and need, it is likely that you will see some changes.

Monday, January 4, 2016

Health Central Story: Turning Points

A couple months ago, I was contacted by healthcentral.com because they wanted to do a story on me about how having ulcerative colitis led me to my career of counseling others with chronic conditions. Last month they flew out to film it. It was extra special because my husband and son were able to be a part of it. Here is the link for those who want to check it out!