Dysautonomia Awareness Month

If you're an avid follower of this blog, you'll know that I have dysautonomia and it's likely not going away any time soon. Some days are better than others and some days all I want to do is stay in bed and sleep because my body tells me that's what I need. I almost never get to do that, though.

Well, October is Dysautonomia Awareness Month - it's also Breast Cancer Awareness month. Both diseases are wretched but one gets more coverage and publicity than the other. So, this month, I'd like to give you - dear reader - some insight into how you can help people you love who probably feel a lot like me. Today, we're going to talk about ways to help in some very blunt language that I will not apologize for.

Ways to Help

• Since dysautonomia patients are awful at telling people what we need (mostly because we often don't know), just show up. Tell us you're coming to hang out. Be present with us.
• Offer to babysit or bring in dinner - while we may have some dietary restrictions, we'll tell you exactly what to get and what not to get. Just the idea of having someone help out is amazing.
• Let us vent because having this disorder SUCKS and we often bottle up our pain and emotions because we believe no one wants to hear just how bad it is.
• If you offer help and we take you up on it please own up to it. Don't offer if you're not going to actually do anything. Sometimes we need someone to run to the pharmacy just to pick up our medication or we need a few extra bottles of Gatorade. So, if you're going to offer help, own it.
• Treat us like humans, not patients. We get enough shit (pardon my French) from our doctors and the society around us, we don't need it from you, too. Be supportive while treating us like human beings. We are not our illness. We have SO much stress weighing us down that we don't need to hear your comments about how we don't look sick or how if we just moved a little bit more, we'd feel much better. Do. Not. Do. That. If we look fine, it doesn't mean we're not sick. It means we used up a lot of energy to fake it until we make it.
• Help us relieve stress within our limits but don't try to sell us on anything like oils or diet pills. Our bodies suck - we don't need to add anything into that and the stuff you sell may not be doctor-approved. This condition is also costly, please don't try to make a buck off of us - if we want what you're selling, we'll ask you for it.
• BUT if you see a gadget or something that may help us, feel free to buy it for us and add it into our collection. We're not asking for Fitbits (well, maybe some are) but cooling pads, peppermint oil, and even some As Seen on TV products may be helpful and we'll really appreciate it. They go further than flowers.
• Donate to help us find a cure or even just better treatment plans. Research is expensive and we don't get the funding that other disorders get - every dollar helps.

Stay tuned for our next installment: What Not to Do/Things That Are Not Helpful