This is a fantastic post written by Jenna at http://fibromyalgiaproblems.tumblr.com/
1. Don't pull away when they talk about their illness.
Especially if they’re recently diagnosed, they’re not doing it for attention. They’re not doing it for pity, they’re doing it because a diagnosis and an illness are a HUGE thing in a sick person’s life, it’s something to talk about. Just listen, you really don’t have to say anything else. Just be someone they can talk to.
2. Do research about their Illness/Illnesses.
Nothing is harder than trying to explain what it’s like dealing with a chronic illness to a healthy person. It’s like explaining color to a blind person. If you know what illness they have, do some research, find out what it is, what symptoms they deal with, and even how other people with the same illness deal with it and describe it. Don’t be afraid to ask questions.
3. Offer help
Okay, this one gets complicated. You certainly don’t want to make your ill friend feel bad about not being able to do things. Also, we tend to refuse help. Not always out of pride, but out of fear that people will get tired of helping us or dealing with us.(Like they often do!) So, if you know that something is hard for them(lifting objects, opening doors, opening bottles, carrying groceries) offer help in a way that makes it clear you really want to help, not that you “feel obligated” and also, if your friend says they can handle something, let them. Yes opening bottles hurt, but sometimes we get so frustrated with what we can and can not do that we’re wiling to put up with some pain because we just want to do something for ourselves if we can manage it.
4. Accompany them to Doctors Appointments, or offer to help schedule appointments.
Scheduling doctors appointments is *such* a hassle with chronic illnesses. Most of us see many doctors, or need to see many doctors, so it can be hard calling all around trying to schedule appointments.
Doctors appointments are also a stressful thing, and it can be nice to have a friend accompany you. It is also hard for many sick people to drive to their own appointments Your friend may not want you in the exam room with them, but offering to drive them and sit with them in the waiting room could be a *HUGE* help.
5. Understand that they may need to cancel plans last minute, and be okay with rescheduling.
Chronic illnesses are often so unpredictable. We can be doing okay one minute, and in excruciating, unable to move pain the next. Just remember your friend isn’t canceling to stand you up, but because they really need to. Or, remember that sometimes we can’t plan things in the first place. It’s not that we don’t want to go out with friends, we really, really do, but sometimes we’re not healthy enough to have time left over from work or school or doctors appointments or just cooking/cleaning to do anything else.
6. Go to them, rather than them having to get out.
Getting out of the house always is hard with a chronic illness. It’s hard to drive, it’s hard to walk far, it’s hard to sit in uncomfortable chairs, it’s hard to be away when we might need our self-care resources we have at home and could need if our health takes a turn for the worse, and it’s hard going places where you don’t know what to expect. Instead of trying to go out to dinner or to a movie or something, go visit them at home and bring take out or cook food, and rent a movie, just have a more quiet night where you can still spend time without your friend having to straining their health.
7. Try to match their level of humor about their illness.
Some people don’t joke about their illness, so obviously this doesn’t apply so much with them, but a lot of us do. I’m sarcastic ALL the time about little things, I’m constantly joking about my illness, and usually it just weirds my healthy friends out. I still remember the first time a friend make a funny comment about an illness, I take a lot of salt for low blood pressure, and we were watching a documentary talking about how the Mediteranian Sea will eventually be a salt desert, and she said “Jenna! You should live there!”
8. Don't insist they the new "Miracle Cure."
We try a lot of treatments. Most of them don’t work, or do much at all. We get tired of hearing “Oh my aunt’s sister’s cousin had your illness and drank vinegar-water and now she’s all better! I’m sure it would work for you!” because chances are we’ve tried it and it didn’t work, or we’ve tried something similar and know it won’t work. If you’re doing research or come across a treatment, now and then, it’s okay to say “Have you ever heard of____?” But don’t chastise someone for having a reason not to try that treatment, whatever it is.
9. Don't assume they'll get better.
I know it’s hard to see someone you care about have to be sick all the time, and to know they’re not going to get better. It’s hard for us too. But that’s life, and it just needs to be accepted. You have to accept the fact that there is no cure for most chronic illnesses. That’s why we call them chronic. We don’t have to give up trying to find solutions for certain symptoms, but there aren’t any real “fixes.” In most cases, we just aren’t going to be healthy again, ever.
10. Remember they're still just people.
Sick people always talk about not letting their illness “define them.” It becomes a huge part of your life, obviously. When your friend wants to talk about their illness, let them. When it comes up, be okay with talking about it. But don’t bring it up all the time. We can never “forget” we’re sick, but sometimes it’s nice to act normal and healthy. You have a friend with an illness, but that isn’t all they are, they’re still your friend- a person with so, so much more to them than what they deal with.
aand also: READ THE SPOON THEORY!
It’s a brilliant description of how we have to think and plan our lives around illnesses.
