When you develop a chronic and painful illness, you really find out who your lasting friends are. Most of mine simply drifted away, and even the ones who are still around, I sometimes find that our conversations are stilted and awkward. This isn't much surprising, after all, I don't have many topics to discuss other than my illness, issues with doctors or getting disability, some new treatment or side effect of a treatment, or the frustration I feel when I'm faced with yet another thing I cannot seem to manage. And no one ever seems to know what to say to me, or feels comfortable talking to me about my illness. I think sometimes they worry about coming across as feeling sad for me, or maybe they do feel sad for me and wish they didn't, or they want to help and are frustrated because they can't, and are just afraid of saying the wrong thing and making everything worse.
So I thought maybe there should be a script. After all, lots of cultures have very formalized interactions in certain circumstances, and then everyone knows what to say and how to say it, and once you've learned those things it becomes second nature. I think I would have kept more friends around if the conversations had not been so stilted, and the silences not so awkward. These kinds of visits are vitally important for those with chronic illness to ward off the perils of depression.
Step One: Before Your Arrival
So, you've set up for a visit, and on the day of, you should call to make sure your friend is still up for a visitor. Pretend you are the wakeup call (you may very well be) so that your friend can be up and get prepared for your arrival. Remember that it may take them much longer to get dressed and ready than a normal person. But don't call so far in advance that you might be robbing them of valuable resting time. If you have discussed this beforehand, you may already know how far in advance to call, but two to three hours is probably sufficient.
Step Two: What's Your GamePlan?
Obviously, you want to spend time with your friend, and when your friend is chronically ill or in pain, having a planned activity is more than likely doomed to failure. But that doesn't mean your visit should be without purpose. If you do happen to have an activity which requires active participation on the part of the ill person, you should also make alternative plans in case they simply aren't up for it when that day rolls around.What NOT to say: If you need anything, don't hesitate to ask.
What TO say:
- I've got to stop by such-and-such store, do you need anything from there?
- Are you hungry? I was thinking about grabbing some _____ or _____ and bringing it over to share.
- How are you on medications? Do you need me to pick up any refills for you? (This can also be a purpose arranged in advance.)
Other purposes for a visit can include helping with household chores, taking your friend to a doctor, or helping them watch the kids. Obviously, it isn't all about work, but because you stopped by the store to grab milk on the way to their house to watch a movie, you are more than a friend, you are a valuable asset in your friend's struggle with chronic illness.
Step Three: Assessment
It's important to gauge how well your friend is feeling that day, and the best way is to ask. Remember that looks can be deceiving. Hopefully, you and your friend have an open and honest level of communication with one another, and your friend does not try to hide pain, but even if he/she does, that is probably because he/she values and needs the interaction more.
What NOT to say: How are you?
What TO say: How is your pain level today? You can even ask, "on a scale of 1-10" just like they do at the doctor's office.
If you are VERY close friends with this person, and the pain level is high, you might also want to ask, "is it time to take a pain pill?" Some of us are terribly forgetful, and we are used to being in pain all the time, for so long, that we will wander around hurting and then never remember to actually take the pills for it.
Other things you can ask include:
- How are your doctor visits going?
- Are you on any new treatments since I saw you last?
- How is your disability going (if they are filing to get disability, this can often be a source of great frustration).
Some days talking about these topics will make us sad, and sometimes angry, but not always. Sometimes we talk about them just because it is what we have to talk about. So you don't have to feel sad for us all the time. But our illness is a big chunk of our lives. To not talk about our illness and its issues would be like having a kid or buying a new house and then not being able to talk about it ever. Just accept that this is something huge in your friend's life and talk about it like the weather--some days it sucks, some days it's not so bad, and it's forever changing in the blink of an eye.
Things you SHOULD NOT do:
- Give hugs without asking. Hugs can hurt. You should always ask if a gentle hug would be okay.
- Say "it will be okay". You cannot predict the future. And for a person with chronic pain who is disabled, it probably won't be okay. Chronic pain can be managed, but generally never goes away completely. It isn't going to get better, and it may very well get worse, and we know it.
- Give advice or suggestions. "If only you would [eat better/try this treatment]..." We have teams of doctors, and our illnesses are complex. Now if you have a book or article, you CAN say, "hey, have you seen this or heard about this yet?"
Probably the best thing you can say, and the simplest and truest is "I am here for you."
Step Four: Sharing
Friendship goes both ways, and while a chronically ill friend will take more of your resources than they will be able to return, that doesn't mean it's all a one way street. Now that you've assisted and assessed, it's time to share what is going on with your life. And trust me, they will enjoy something that has nothing to do with their illness as well.
Bringing pictures or video of an outing or an event is a wonderful way of sharing. If your friend is really sick (bedridden), they may enjoy having someone read to them, in which case you can share a favorite book. You can watch a great movie together. Talk about events in your life, something that concerns you or something that makes you happy. Your frustrations or your feelings. You should have something in mind to talk about before your visit, even if it isn't what you end up discussing. Always be prepared.
Do not be concerned if sharing makes your friend nostalgic or sad. Some people don't want to discuss fun things that they have done for this reason. I assure you, a little sadness from not being a part of these events is better than the long crushing alienation of the world passing you by completely. If your friend is sad, it is because they want to be even more connected to those events, and with today's technology, that is becoming more and more possible. You are an important lifeline to the outside world; do not sever that cord.
Tell them: It's okay to be sad. Would you like me to stop? We can always do this later if you want.
Many times, even if they are crying heavily, they still want you to continue.
Also, be aware that both pain and certain medications can make it difficult to pay attention. Try to have patience if your friend has trouble following along or seems distracted.
Step Five: Re-Assess/Signs of Fatigue
Be on the lookout for signs of fatigue. Your friend may be so excited about your visit that they may not even notice until they are drooping with exhaustion. Do not stay all day, unless you are helping out and you are sure your friend is properly resting. If your friend seems reluctant to have you leave, it means he/she is probably not getting enough interaction. Instead of staying when you know your friend is tired, you should schedule another visit instead.
I really hope these guidelines help, and welcome any input or feedback.