I’ve written a couple of posts on here about things you shouldn’t do with spoonies in your life (see 5 Reasons Why Unsolicited Advice Hurts More Than It Helps or 8 Things That Spoonies Are Totally Over) but you may be left wondering what you can actually do to help support the spoonie in your life. There are lots of ways to support a spoonie, but here’s a list of 6 relatively small actions that can have a big impact in the life of a spoonie.
1. Reading about our illnesses
As you may have gathered from my previous posts, not many people know about or understand my chronic illnesses. While I have multiple illnesses, the ones that impact my life the most are Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) and most doctors I meet don’t even understand , let alone know how to pronounce, my illnesses. So, when a friend tells me that they read up on my illness, even if it was just a Buzzfeed list article, it really makes my day.
Taking time to learn something about my illnesses tells me that you care. It shows that you are interested in what is happening in my life. It also shows me that you recognize my illnesses as real and valid. Many spoonies get accused of faking their illnesses or being attention seekers. I’ve heard of people being told, “well, I’ve never even heard of that illness, I think you’re making it up.” We meet so many disbelievers in our chronic illness journey, it really means a lot when someone acknowledges our experiences as real and valid.
2. Listen without trying to fix
As I mentioned in 5 Reasons Why Unsolicited Advice Hurts More Than It Helps, I understand that it is hard to watch someone you care about suffer and not be able to do anything about it. This often leads to people attempting to provide “cures” or even just avoiding conversation with us period because they don’t know what to say. When people tell me to “just think positive” or to “stop being so negative” all it tells me is that they are uncomfortable with hearing about my struggles and that I can’t talk to them about it.
Trust me, I know that you can’t cure me. You are officially off the hook. If my doctors and the medical professionals who have been researching my illnesses don’t have the cure, I certainly don’t expect you to have it. What I do need is an empathetic ear. I need to be able to scream out, “this sucks and isn’t fair and I hate it!” and have someone say, “you’re right, it really does suck” instead of, “well, have you tried juicing?” Some days are better than others, and some days my mood is better than others. But, it’s the people who listen to me when I’m at my lowest that I go to on my best days to celebrate any achievements. Those are the people who have shown me they truly care.
3. Spread awareness
I am ashamed of how little I understood about disability rights, ableism, and chronic illnesses before I became disabled by my chronic illnesses. There were a lot of things I didn’t notice or never thought about before that my eyes have recently been opened up to and it weighs pretty heavily on me. That’s one of the reasons why I work so hard to help spread awareness about disability rights as well as chronic illnesses. I try to point out ableism when I see it to help people understand the effect of their words and actions. But, as with every movement, having allies to help support our mission is an important part of instituting change.
It makes my day when I see a friend share information about life with chronic illnesses with others. I love seeing people help call out ableism when they see it, or, if they shared something ableist and have it pointed out, go back and change it showing that they are willing to learn and do better. As mentioned before, not many people know about or understand my illnesses. Illnesses that aren’t well known tend to not receive a lot of funding for research, so the more awareness we can bring to these illnesses, the better chance we have of getting better funding to research facilities so we can learn about better treatment or maybe even a cure.
4. Make ’em laugh
Don’t you know everyone loves to laugh? Singing in the Rain references aside, laughter may not literally be the best medicine, but it definitely helps. I advise caution with this: that doesn’t mean I want you to send a bunch of memes or messages making fun of sick people, or chronic illnesses, or disabilities, or anything like that. I won’t find that funny. I enjoy memes and funny pictures about aspects of life with chronic illnesses, disabilities, etc., not the ones making fun of people who have them.
A really easy way to make someone’s day is to help them laugh. There are times when I’m in severe pain and finding it difficult to keep going. Then, someone will share something with me that makes me laugh and everything seems just a little bit better. It makes me feel cared about and less alone in the fight. A good laugh can really brighten a dark day.
5. Grieve with us
There are also days that can’t be brightened. There are days that are difficult and dark and it takes everything I have within me just to survive the day, let alone enjoy it. These are the days that even the funniest of memes or gifs or youtube videos won’t help me through. One of the important lessons that I’ve learned in my PTSD treatment is that sometimes you really need to feel your emotions, so pushing them down or trying to hide from them will only hurt me more in the end. But that doesn’t mean that you have to go through it alone.
These are the days that I need that empathetic friend who let me scream and shout, but in a slightly different capacity. On my absolute worst days, I often just need someone who will exist with me. Who will let me cry or grumble, and who will grumble along with me. Who will watch as I eat a tub of ice cream without judgement. It’s the kind of friend that comes over after a bad breakup to sit with you watching cheesy rom-coms while you both exclaim about how stupid love and relationships are. Some days I am angry at the world and feeling cynical, on those days having a cynical friend to complain about everything with helps me to feel less alone. It helps me to release my negative emotions and to move on. Even just receiving texts from a friend saying that they love me, that they hate everything I’m mad at, and telling me to eat all the cookies I want, even just that can be enough to get me through the darkest of days.
6. Ask us what we need
No two spoonies are exactly the same, therefore we all need different things. Maybe there’s a spoonie in your life who really needs help grocery shopping. Or a spoonie who needs a ride to and from doctor appointments. Or a spoonie who needs help cleaning. Or a spoonie who needs financial support and has a gofundme you can contribute to or a business you can help support. Sometimes, even just having someone ask me how they can help me is enough to remind me that I’m not alone in this and there are people who care. I honestly don’t always know what I need, but knowing that someone is willing to help me once I figure it out can definitely help relieve some stress.
If you already do these things for a spoonie in your life, then keep on keeping on! If you don’t, try to find a way to start, even if it’s just one small thing, you have no idea the impact it can make in a person’s life. To the spoonies out there who are reading, what little things do people do that help you get through the day? Let me know in the comments!
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