When you have a friend or close family member with a chronic illness it can be difficult to deal with.  You don’t understand what they are going through and truthfully almost every time you ask them to do something they usually say no because they are too sick or too tired, again.  You may feel like it’s time to dismiss the relationship.  As someone with a chronic illness, I don’t blame you, I mean you are only human and how many times can you ask someone to hang with you on a Saturday night before they actually say yes?  I know you feel rejected and that’s not what anyone wants. I can honestly say that 100% of the time your friend wishes they could say yes.

Let me do my best to explain why your friend usually turns down your invitations.  Living with a chronic illness or chronic pain puts a damper on everyday activities and plans on a regular basis.  I have Fibromyalgia and Crohn’s disease and some days I feel terrible, but some days I wake up feeling good so I take a shower, pick up the house a little, and maybe make a Target run. I’m excited about our plans for tonight and take a deep breath and smile knowing that hanging with my bestie is exactly what I need.  

Now it’s noon so I fix some lunch and then 10 minutes later,  the headache starts. I decide to rest and watch a show, but my body is throbbing, especially my back so I reach for the heating pad and a pain reliever - it doesn't help.  I know what this means. I’ve been living with this pain for a long time - I did too much. Yes, taking a shower, picking up the house, a Target run, and making myself lunch was a little too much for me.  My energy is spent for the day and I know if I want to cook for my family later or read a book to my kid before bed, I have to stop now. This doesn’t happen every day, but when it does I know if I do anything else that is a little strenuous or stressful (good or bad stress on my body), I will be in bed for a week so I call you and cancel - again.  I know I shouldn’t apologize for taking care of myself, but I do.  I’m so sorry I can’t be there.

Believe me, this is the last thing that anyone with a chronic illness or pain wants to do.  We want to go out and laugh and dance and feel free, but that is not our reality today. Maybe next time it will be.  So you may be asking yourself, why don’t people with chronic pain plan better?  If we know we have something to do that evening, why don’t we take it easy during the day so that we are energized for the night out with our friend?  Well, it’s not that easy.  Chronic illnesses are unpredictable - one day running to Target makes you feel accomplished and energized and the next it makes you achy and exhausted.  I mean who thinks that taking a shower can be exhausting?! No one. Trust me, we are trying to be present, there is nothing we want more.

Every day that we wake up we try and have hope that today will be better, that today we will be able to take our kids to their events, clean the house, and go out on a date with our spouse all on the same day without pain or fatigue.  This is why you can’t give up on us. We need to know that you are still here for when we do or don’t have the energy to do “normal” things like stay out late, go on a weekend trip, or simply go out to dinner and a movie. 

So to help you maintain your relationships with people who are living with unpredictable illnesses and I thought I would share 5 ways to let them know you care:

1.  Tell them.  You know your friend doesn’t feel well, you know your friend is probably depressed that they can’t go out too much and yet sometimes it’s hard to pick up the phone to call or text.  It’s hard sometimes to hear the same thing over and over again when you talk to them. It seems that they don’t have many exciting stories for you because, for them, they are excited if they aren’t exhausted after going to the grocery store or that they got to play 5 games of UNO with their kid.  This may not be as thrilling as your recent trip to NYC, but just imagine how they feel. They know it’s not the typical excitement, but they are happy and feel accomplished even when they accomplish something that seems small. Cheer them on as if they won the goddamn lottery because sometimes that’s what playing UNO feels like.

2. Ask them out for lunch.  Lunch is a short event that can be fun and won’t have your friend out too late.  Eating out is social, but can be tricky for someone with a chronic illness. They might have dietary restrictions so let them choose the restaurant and go and have some special time with your friend.

3. Have a movie day.  Call your friend, go over to their house with snacks and binge-watch the latest show or a movie on Netflix.  They will appreciate that you are taking the time to hang out with them while at the same time keeping them comfortable.  You could also go to one of those fancy theaters with the heated seats - a movie and therapy for our achy muscles - yes, please! 

4. Offer to help.  When I say doing the smallest tasks are hard, I’m not kidding.  Sometimes my limbs feel like they are encased in cement and I can barely lift a freaking glass of water.  In times like these, I would love help, but it’s hard for me to admit I need it. I honestly feel pathetic that I can’t do simple tasks without pain.  One day I was in so much pain I couldn't even turn the steering wheel in my car or tie my shoe. Now, I know you are not a mind reader so how will you know if your friend needs help?  To be honest, just assume they always do. You can offer to help with picking up their kids from school, or going with them as they run errands, even batch cooking together for the week ahead would be helpful.  Extending a helping hand doesn’t always have to be doing things for someone, it’s nice when we have a friend along to take your mind off the pain as we run errands or organize a closet. Think about your strengths and what you are going to do anyway and see if your friend would benefit from doing something together.

5. Send some snail mail.  Maybe you don’t live near your friend or it’s been extra difficult to connect face-to-face lately.  Let them know you are thinking about them by sending them a note or gift in the mail. I love Greetabl, cards by Constellation & Co., and any independent book store near you to send something fun to a friend!  

Most importantly though…

Don’t ever stop inviting them.  I know we say no to a lot.  You may have thought to stop inviting us, but please don’t.  We already feel forgotten by so many friends and some family members that if we lost you too it would be devastating.  I know we don't see each other much, but the times we do are very special. Please keep inviting us even if you know we will say no because we need to know that we still matter.  We need to know that you still think about us and that even though we say no most of the time, you have hope for that time we can say yes.

Thank you for reading,

xo,

Kelly

you might also like