Twelve things your chronically ill friend wants you to know about feeling left behind, and what you can do to help!

Twelve things your chronically ill friend wants you to know about feeling left behind, and what you can do to help!

Twelve things your chronically ill friend wants you to know about feeling left behind, and what you can do to help!

Chronic illness can steal everything from a person. The ability to: move freely through the world, sleep, have a career, pursue their dreams, the chance to live pain-free, and the opportunity to have an active life.

People with chronic illness are not sheltered from reality. They know their lives have made a dramatic shift: The majority of them had full, happy, lives, prior to becoming sick. That means they are mourning much of the life they unwillingly lost, including the friends that decided it was too much work to maintain a friendship. I teach people to concentrate on the positives in their lives; to practice gratitude for the friendships that have survived because those people are their true friends.

In understanding that Chronic illness doesn’t have to lead to chronic unhappiness we learn that our new life doesn’t have to be emotionally wrought with pain, even as our physical bodies might be. Patients often question how to maintain a social life with their heathy friends. They also question how to avoid feeling left behind when their health interferes with activities their friends engage in as life moves on for everyone else.

One of the worst things someone with chronic illness can do is make a mistake in the balance between keeping a social life and over-extending themselves. Misjudging their energy and strength can lead to more relapses of symptoms, or worse.

Here are some helpful hints for how friends of people with chronic illness can assist in maintaining friendships, while still doing things that will be enjoyable for all people involved!

1. A visit to a chronically ill person’s house to talk can mean just as much as a lunch or coffee date out. For a big treat, stop by on the way over and grab a surprise cup of our favorite coffee or a frozen yogurt. We can have just as intriguing of a conversation sitting at the kitchen table as at a diner or coffee house and we will be much more comfortable. This will keep us from being sequestered from your lives, yet, keep us from the trials of going out.

2. We are really proud of you for that marathon (5k, swim-a-thon, bike trip, hike, ski trip, etc) you just completed! If you see a sad look flash across our faces, it isn’t negative jealousy, truly it’s not. It’s the utter sadness that we know we will likely never get to experience that accomplishment with you and wishing we could join you. But, please, please, share away. We want to be part of your life, we want to know your joys; don’t hide them from us, please don’t be offended if it takes us a second to catch our breath before we belt out a hearty, “Congratulations! I’m so happy for you!”

3. We’d love to go shopping with you. We still like to do the things we used to do, and we don’t want to lose all of the shared times we had with you! We only ask for your patience with our pace and your understanding when the trip is abbreviated due our pain, fatigue, or weakness. We can always look at it as an excuse for an extra long lunch, dessert included. But either way, please treat us tenderly if the day doesn’t go as planned.

4. We miss our nights out on the town! We remember “dancing on the ceiling” and not “going down ’til the sun comes up!” But unfortunately, these days, nights like those might end with us at the hospital emergency room. If you have a great girls’/guys’ night out planned, it would be nice to include us for dinner before you go on to party! That way we can still feel a part of your night life, but be back home in our comfy clothes before time for our next dose of meds. We can still “party like it’s 1999” at dinner!

5. Leisurely bike rides, hikes, and nature walks may have been a big part of our friendship in the past; but while you can still do them, we aren’t so able anymore. Consider going with us on car rides to see the fall foliage, or on a short walk at a park with a nice, flat trail. Or join us for a picnic and enjoy the scenery from the convenience of a picnic table. We can still enjoy nature, it will just be at a slower pace!

6. Offer to drive if we are going on a long outing. I know for me, it takes a lot of energy to get ready, then driving takes more energy, and the activity takes even more energy. (Heck, I’m ready for a nap after I shower and get dressed.) By the time I have to drive home, sometimes, I am so tired I am scared to try. If you can offer to pick me up and drive to our destination it takes off two of my responsibilities (AKA two energy-zapping activities), energy I can spend, instead, on talking and listening to you, enjoying our chosen activity, and/or walking a few more minutes.

7. I really, really, REALLY, REALLY don’t care if you drink. My not drinking is not an indictment of your drinking. I’m taking medications that make drinking dangerous, and no, I’m not exaggerating that, nor am I making it up. You, on the other hand, continuing to badger me about drinking…now, that might make me mad. But, you having a glass of wine, shot of tequila, or a bourbon and Coke, while I have my Shirley Temple and we chat, is not offending me. Drink away! Live your life!

8. I’m not lazy, I’m ill. When I stand for too long my body hurts all over and I get very tired, very fast. If I say, “Hey can we find a seat?” Don’t take that as me trying to end the conversation, I probably want to continue talking to you, I just want to do it in a more comfortable position – sitting down. We can resume our challenging debate about climate change protocols in Siberia once I am cozily nestled in my lawn chair.

9. Some chronically ill people are unable to leave their houses, which is even more isolating. If you are friends with someone who is housebound you could offer to visit and cook dinner together, bring a bottle of sparkling cider, or if appropriate, dinner wine. Bring a pretty tablecloth, and a candle or small bouquet of flowers to set the table like at a restaurant. Play music in the background so your friend feels they are transported out of their house. Sharing an evening’s dinner will brighten their day, and give them a short respite from the monotony that constantly being at home brings.

10. I have heard the following from countless people: “I am a fallible human. I feel alone and scared. I don’t want to be sick, and I don’t want to miss out on life and the things my friends and I used to do. I will make mistakes as I work my way through this “new normal.” I don’t want to be seen as “that sick girl/guy.” I want to be seen, first and foremost, as, me, the same person they have always known, just with some physical accommodations. If I cancel plans on my friends at the last minute, I hope they try not to take it personally. I hope they will take a breath and remember that even if I am smiling, I am dealing with something they don’t fully comprehend, inside. If I make a mistake I hope they will tell me, with love, so I can do better.” In short, treat your chronically friend, like, well, like you’d treat a friend!

11. Please don’t make fun of me, call me a liar, or doubt my sincerity. It hurts my feelings when I have to miss outings and nobody seems to care about the emotional impact. It is so hard to admit that I can’t go to outings that sometimes I am willing to sacrifice my health and go anyway. Admitting I can’t go is a big step that takes bravery. Please be kind and understand what a loss this causes me to feel. Again, treat me like you would treat a friend.

12. I want to be a good friend to you, sometimes it might seem that I am self-centered, but I don’t mean to be. For instance, if it seems all I talk about is my health, and I don’t ask about you, it’s not because I don’t care. I may be scared about an upcoming result, or I may have been isolated and not talked recent events through yet. But that’s no excuse. Call me on my stuff, as you would have before. Ask me when you get a turn to talk!? Just do it with kindness, and I promise to give you the same courtesy. Allow me to treat you like a friend. Including accepting my apology when I mess up.

Know that friendships are vitally important to people with chronic illness, just like everyone else. We value our friends and we miss the friends we have lost to illness. We know it is a little extra work on both of our parts, but we want our friendships to be stronger than our bodies – which can happen if we work together. With a little bit of thought and teamwork, chronically ill friends don’t have to feel left behind.

(This article first appeared at http://www.emilyfilmore.com/blog/leftbehind)

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Hi, this may be interesting to you: Twelve things your chronically ill friend wants you to know about feeling left behind, and what you can do to help!! The link is included below: https://understandingmyositis.org/leftbehind/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.