Have you lost friends because of your chronic physical or mental illness? I have. Actually, I’ve lost quite a few friends since I got sick, for a lot of different reasons, but the only ones I really regret are the ones I’ve lost to chronic illness burnout. Those, I could have prevented, if I’d known back then what I know now.
I used to have a very small group of friends that I talked to, and everyone else got the “everything’s fine” act. There’s not anything wrong with giving people the act, if they’re only acquaintances or coworkers, and they don’t NEED to know what’s going on with you, the problem actually comes in with the people you really talk to. We all need someone to talk to when we’re having a high pain day, or the depression is so bad that all we want to do is curl up and die, but loading it all on just a few close friends can be a bad thing for them and for you.
Whether you have a physical illness, a mental illness, or some combination; if you only share your pain and negative feelings with a few people, there’s a danger that it will be too much for them. Overloading your support network can cause them to have to pull back so that they can take care of themselves, especially if that is all you ever talk to them about. This is not selfishness on their part, it’s self protection. You HAVE to deal with your chronic illness every day, but your friends can get burned out if you lean on them too heavily. (We can get burned out ourselves, too, but it belongs to us, and it’s a lot harder to step back from when it’s yours.)
Don’t freak out!
I’m not saying you can’t tell your friends how you feel, or that you’re having a hard time. What I AM saying is don’t depend only on one or two close friends for all of your emotional support. Everyone has their own crap to deal with, and sometimes they can’t deal with your stuff too; but when you have a lot of people you can talk to, there’s a much better chance that at least one of them will be in a place where they can be there for you.
You’re here, reading this, so obviously you have internet access . . . USE that. If you’re on Facebook, Google+, Twitter, or any of the other social networking sites; connect with other chronic illness patients, join support groups, and follow people who blog about your illnesses or post useful links. (If you’re not on any of these, join at least a couple of them. I’ve found tons of support on FB and Twitter, and now that I’m starting to participate on Google+, I’m finding lots of interesting people there, too.)
It takes a little time to build a support network, but it’s more than worth the effort. Join every group that you can find that might be a good fit for you, spend some time there, introduce yourself, interact, ask (and answer) questions, and let people know who you are. Not every group works for everyone, but if you look, you’ll find at least a couple where you feel comfortable and accepted, where you can get answers to your questions and find someone to talk to.
Getting the most out of your support networks:
- Remember that online groups are set up to provide support for ALL the members, so be sure to give back. It can be hard when you’re in the middle of a bad patch of your own, but try to remember to ask how other members are doing too.
- For r/l (real life) friends and family, make sure you show interest in what’s going on with them, too. Just because they aren’t sick doesn’t mean their lives aren’t important, and if you only want to talk about your own “stuff,” eventually they’ll pull away.
- When something good happens, share that too. It gives everyone hope when we hear that someone has found a doctor that actually listens, or that you’re having a low pain day, or even that you’re reading a book that you really enjoy or were able to wash dishes for the first time in days.
- If you find an online resource that has helped you, share it. It only takes a couple of minutes to copy and paste the link, and it may be exactly what someone else has been looking for. If a specific group doesn’t allow posting links (some don’t because of the spammers,) you can always share it on your timeline, or in a private message to people you think might be interested.
- Be polite! You aren’t going to agree with everything you find in a support group, and that’s okay. It’s not okay to attack someone because you didn’t like what they said.
- Everyone is different. Just because something doesn’t work for you doesn’t mean it won’t work for someone else; and something that made a huge difference for you might actually make someone else sicker. Neither one of these means that one of you is wrong when you share your experience, just that your experience is different.
- If you aren’t comfortable with people knowing who you are, set up a free email account and use a nickname for your networking instead of your real name. Many of us aren’t comfortable with having personal medical and emotional issues “out there” where bosses, coworkers or unsupportive family members might see them.
- Never, ever repeat what someone has said in a group without specific permission. You wouldn’t want other people to make your private business public, so don’t do it to anyone else.
- Finally, it’s even more important to “spread the pain” when you’re getting support from other chronically ill people. Don’t pick just a few people to depend on, and expect them to always be available to listen to you, it’s just not physically or emotionally possible.
More Places to find Support:
There are also forums and free membership sites for everything under the sun, from well-known diseases like diabetes and cancer to things nobody outside of the chronic illness community has ever heard of like Reynaud’s Syndrome and RSD (Reflex Sympathetic Dystrophy.) Many of these sites have individual forums and groups for specific issues related to chronic illness; like groups for those going through the disability application process, or those fighting the Worker’s Comp system to get appropriate care, or even groups for people who have illnesses that are difficult to manage together. (Fibromyalgia and bipolar disorder are a good example of the last, since many of the medications used to treat fibro can cause/trigger manic episodes, and a lot of bipolar medications have side-effects that mimic some of the symptoms of fibro.)
You may not find anyone that has exactly the same set of challenges that you do, but that doesn’t matter. Even if you have fibromyalgia, and someone else has chronic back pain from an injury; you can still support each other. No matter how different the details of your illnesses, there will still be many common issues. We ALL deal with family and friends that aren’t supportive; we all deal with days when we just want to give up; we all deal with doctors and nurses who don’t believe us or think we’re just looking for drugs when we say we’re in pain; we all deal with trying to find the resources we need; we all deal with side-effects of treatments; and we all deal with the high physical, emotional, and financial costs of being sick all the time.
The biggest advantage of finding support online though, is that there’s almost always someone out there, and the more people you connect with, the better the chances that someone will be available when you need them. Even if one friend is sick and unavailable, someone else will be around. Maybe not at that exact moment, but you can always leave a post and come back to it later to find supportive comments or answers to your questions (and even better, if something really helps, you can print it out and save it to look at when you need it the most.) Who knows, you may even find that it’s easier to share with people who don’t know you in real life . . .
If you enjoyed this post, or found something helpful in it, please share it with your friends. We can all use all the support we can get! And, please, if you have any tips I’ve missed, leave a comment!
- Caring for a Loved One: Stop Caregiver Burnout (healthmad.com)
- Why online support may be the answer to your diabetes burnout (snowflakesofwinter.wordpress.com)
- When you’re ill: how can you ask for help? (chronic illness and protracted withdrawal syndromes) (beyondmeds.com)
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