Chronic Diva

While my blog is mostly geared toward those struggling with chronic illness, I am hoping to get this message out to those in the community who have friends or loved ones with chronic illness. One common theme I hear among the various pain communities I am a part of us is feeling lonely or abandoned or both. I think it is difficult for those who are able bodied to figure out how best to handle some of us who are less so. Instead of opening a line of communication, to perhaps figure out what can be done, the friendship often becomes strained or the chronically ill individual chooses to take themselves out of the equation because it is easier than being hurt. I am hoping a few of these suggestions help those friends figure out how they can help, be a better friend and give support.

Here are some ways you can engage with that chronically ill person in your life that will let them know you care and that you want them in your life.

• I believe you

There is no doubt in my mind this is one of the most powerful things you can say to someone struggling with chronic illness. As someone who lives with chronic illness, I can say with firsthand experience, how often we are met with doubt and speculation whether we are truly suffering from an illness. It is beyond difficult when you find yourself trying to convince friends and family that you are ill, because you don’t look ill on the outside. Letting your friend or family words here those three, simple words is so very validating and comforting to them. In our exhaustive and often times pain filled world, having someone who believes in you can also be a much needed life line.

• Friendly Check-in

The chronically ill often times ostracize themselves. Sometimes it is intentional as a way to avoid hurtful questions or judgments and sometimes it is unintentionally, because they simply feel like a burden to friends and family. So giving a check-in, saying hello and letting them know they haven’t been forgotten means a lot.

• You Are Strong

Day in and day out we fight. We fight to get through simple things that others take for granted, like basic care and feeding. We fight to get through more challenging things like work or school (not all of us are able to stay home or get disability), or caring for our families. We fight to do all those things that used to make us happy- those hobbies and activities, like spending time with friends or just that feeling of being alive. We fight for it. Remind us how strong we are. It means that all those things we fight to do are seen and appreciated.

• Forgive your Body

It’s hard for us to not blame ourselves for our body failing. Really hard. When you are struck by chronic illness you suddenly begin to search for answers as to why. Did I do something to myself, whether it was eating the wrong things, not doing the right exercises or not keeping up with physicals? What did I do? Remind us that it’s not our fault. That we did not ask for this and please, remind us that we haven’t let you down.

• Offer to Help

Not something you can do all the time, but trust me, we’re not looking for someone to take care of us. But remember what I said about fighting all the time? It’s rough. Sometimes, just offering to bring some food, or help out cleaning of even picking up your groceries, is nothing short of a miracle in our world. And we will really, really appreciate it.

• I’m Sorry This is Happening

Hearing someone acknowledge the struggle we face everyday can be a very powerful thing to hear. There’s really no way to explain how it feels to have your illness dismissed by so many people, including doctors. It brings to the surface these pervasive feelings of self-doubt and completely invalidates us as humans. But please, don’t muck the sentiment up with “there’s a reason for everything,” or my personal favorite, “You’ve been put on a path, you simply don’t understand why yet.” In an instant your pain is suddenly transformed and there is some divine or mystical reason for your illness that you are simply not cognizant of. There is no easier way to diminish someone’s feelings then by saying that. Life isn’t fair and children and good people find themselves suffering all the time and even dying. Simply attributing their suffering to some unknown or mystical face only makes the person saying it feel better, not the person hearing it and often brings us back to blaming ourselves for something we could not nor can control.

• Creative Ways to Spend Time

Here, we go back to Spoonies isolating themselves because they feel so damned overwhelmed when there’s an invite for some social function. Instead of a broad invite of “Let’s do something,” figure out a way to spend quality time within their range of comfort. If you want to engage with your friend/spouse/bf/gf , you will get creative and they will feel so very loved.

• Make a Donation

It may not seem like much, but making a small donation to research for a chronic illness that your friend or loved one might be struggling with means a lot. It doesn’t have to be a huge amount, the sentiment behind it is a validation of their illness and is worth its weight in gold.

• Listening and Hugs

Sometimes having someone to lean on, someone who will just listen to you cry or rant or rail against the world for the cards you were dealt and hold you (gently) is enough. These are two very underestimated actions that can provide such relief to a chronically ill person.

• Say Nothing

That’s right. At times, having someone there who simply comforts you, when there just aren’t words, is enough. There can be such peace in the silence, and such an undercurrent of love when you can settle in the presence of another, wordlessly and know they understand.