Your loved one just got diagnosed with a chronic illness. Naturally, you find yourself in unknown territory. What do you do – open the doors for honest communication or deny that there is anything wrong with them? Like most people, I’m sure you want to help but just don’t know where to start from, what steps to take and what steps to avoid. Here’s a list of things I think you should avoid doing – based on my personal experiences – to show support for your family or friends suffering from a chronic illness:
The unfortunate reality of many chronic pain sufferers – our loved ones may try to sweep reality under the rug, rather than watch us be in pain. This, however, is one of the hardest times in our lives as it is usually the beginning of a new and painful journey. This is when we need your emotional support, your compassion, your understanding, your love, and more than anything, an ear to lend. We understand it’s not easy to see a loved one in pain, but pretending like nothing is wrong is only going to make us think that you don’t care. Instead, make us feel comfortable, talk about our illness, and work with us to help avoid the stigma related to it.
2. NOT EDUCATING YOURSELF
Unfortunately, most chronic illnesses are poorly researched and understood. Although awareness is slowly increasing, most of these illnesses will have people baffled. Therefore, it’s very important for you to understand the condition your loved one got diagnosed with, and learn its’ symptoms and possible treatments. Without having an understanding of the illness and the pain we go through on a daily basis, you can’t show us genuine support, and neither will you have the patience required for that support. After all, it’s knowledge that will give you the ability to empathize.
3. BEING INSENSITIVE
Believe us because looks can be deceiving. Because we may be putting on a happy face, but deep down we feel like a zombie from The Walking Dead, because most of us don’t talk about our pain and suffering, and because somewhere along the journey, that becomes our new norm, and just something we have to deal with everyday of our lives. Just because we don’t struggle in the open, doesn’t make it okay for you to assume that we aren’t struggling at all! In fact, downplaying or ignoring our symptoms is not only insensitive, but inconsiderate and disrespectful.
4. TAKING CANCELLATIONS PERSONALLY
We are just like any other person trapped inside a body that doesn’t let us do everything we want to do. Sure, we might be the first ones to say yes to any or all kinds of plans but unfortunately, we have no control over how we are going to feel that day. So please don’t take it personally when we have to cancel plans. Because it’s not you, it’s us. We feel guilty AF and hate having to let you down but we are just trying to take care of ourselves. And most importantly, don’t stop making plans with us just because we had to cancel in the past!
5. DRAWING COMPARISONS
Everyone deals with their illnesses differently. The level of their symptoms vary and the way they respond to those symptoms also vary. Please don’t assume you know how we feel and that the pain you’ve felt equates to how we feel. Show empathy for our point of view.
The words you use and the choices you make are very crucial to the successful management of our chronic illnesses and greatly affect the quality of our lives. Your decisions can either improve our symptoms or add to the pain we experience – both physical and mental. We trust to leave it in your hands and hope you won’t let us down.
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With love and spoons,