Freakout Friday: the problem with hope

I’ve had a couple of friends get picked on lately for this same view and I just don’t get it.

As I mentioned before, hope is a four-letter word for me (the bad kind, duh).

I want to elaborate on this, because it just keeps happening. First let me be clear – if hope works for you, awesome! I’m so happy for you and excited that you’ve found something that works well.

A lot of us, especially those who struggle with mental illness as well, can’t hold onto hope that same way. So the view that hope is eternal and crosses boundaries to help everyone is bullshit.

Sorry, but it is.

Hope is inactive. It leaves things up to others, whether that’s gods (prayers) or helpers. When we hope for a cure, we wish, but don’t act. Hope is wishy-washy. Hope is a go-to if we’re just trying to be polite, not genuine. Hope is passive, requiring no work and no acknowledgement of the dedication and tears and sweat that go into things. There is no timeline, no plan, no certainty that the task will ever be accomplished.

Belief, instead, is active. If I believe in something, I will throw my support behind it. I will do what I can to help that task get accomplished. It isn’t always focused on the positive. It’s an affirmation, a strength. With belief comes a degree of certainty. You may be wrong, but you believe in something.

Hope is impossible to maintain at all times.

Let’s be real here.

When I have been in so much pain I can’t see straight, hope doesn’t keep me going. Hoping that I feel better tomorrow doesn’t cut it when you’re dealing with certain pains and a lifelong, incurable disease. You know what does? The belief that the loved ones in my life need me and want me here does – that playing with my guinea pigs makes a difference in how they feel or helping my sister with her kids and her journey to healing from our horrible childhood or my niece tickled pink when she sees me on Skype or spending time with my close friends and us supporting each other or my husband holding me, telling me things WILL get better, or even just that he loves me.

Those things get me through, not a distant idea of hope or blind faith. Real concrete things that are in the here and now.

I believe a cure will come. I believe I will get better, and that belief is somewhat manifesting itself right now. I believe that I am different – I respond to meds or emotions or experiences differently than every person on this planet. I believe I am unique, as we all are.

None of those require ‘hope’ – let alone hope all the time.

When I was living with my mother and would get incredibly sick, I had to put on a happy face for others. I had to look my best or look like death – no in-between. I had to carry-on in the face of crap instead of taking time for myself.

Hope requires a similar covering-up of emotions, and I refuse to do that to make anyone comfortable, even myself.

Only choosing hope and not showing the negative, which isn’t necessarily what this is about but hear me out… It’s bad for those of us with invisible illnesses. We dress well and look happy to hide our illnesses like a prey animal, only to get upset when others don’t realize we’re sick.

Should they stop accusing others and deal with the fact that invisible illnesses exist? Duh. But we also need to stop always trying to cover up how we’re doing.

Happy smiling faces won’t raise awareness or get us funds for a cure.

Only talking about the real things we go through will do that.

Telling people to always choose hope is also ableist. I touched on that a bit at the beginning of the post, but let’s explore that connection between that and classism…

Did you know that 20% of adults in the United States have some type of mental illness? Many of those have multiple mental illnesses like yours truly. Those with physical chronic illnesses are more prone to mental illness due to the difficulties of dealing with their bodies. I think it can be assumed the rate is at the very least close to 50%.

There are also studies out there that certain illnesses like fibromyalgia tend to occur not only in conjunction with other diseases but also in higher rates in people who have experienced abuse, major accidents, or other traumatic experiences.

One group that I’ve seen tend to have all of these issues is adult survivors of child abuse. It’s been proven that child abuse rates tend to drop as income in the family rises. Abuse rates are highest when living with a mother who is either single or living with a man other than the father (in Britain at least, but I’d argue in the US as well). As we see in the links above, there is a strong correlation between childhood abuse and fibromyalgia rates (as an example).

If we, then, compare the ideas of those in low income, single parent/breadwinner situations being high homes for abuse and the rate of fibromyalgia in abused children, we could decide that lower income people tend to develop chronic illnesses more often (and that’s not just my idea or just fibro).

As someone dealing with PTSD from my childhood, which no doubt is also the cause of my depression and anxiety (and the eating issues I’ve had in the past), I’ll gladly share about my childhood.

My mother starting really dating when I was 13. She dated a few guys, only three that really spent much time with us. One is her current husband, another is the man who assaulted me, and the third was a jerk I think she saw to get back at the second honestly.

I came home several times from school to eviction notices on our door. We ate crap every single day because people were too lazy to cook. If we did eat at home, it most often happened because someone was coming over and we wanted to look good for them – or because sis & I decided we didn’t want to eat the crap and would make food.

There were times we didn’t have enough to eat. We used powdered milk. I ate sandwiches that were nothing more than ketchup and mustard because we didn’t have enough money to have much meat let alone other sandwich fixins.

A kid dealing with malnutrition, living in poverty with an unstable home life (as I’ve discussed my mother & grandmother’s epic fights before, I’ll refrain for now) and witnessing abuse/being abused is ripe for chronic illnesses.

That doesn’t mean that if you’ve lived a healthy and happy life that you won’t get sick.

Here’s my point from all this.

I’ve lived in poverty and dealt with abuse, which leaves me with my mental illnesses – mental illnesses that make it near impossible to always look on the bright side. My PTSD keeps me on guard, always worried about my safety or the safety of those around me. I’m hypervigilant, which means I see things in a room or situation that people who have lived without abuse don’t necessarily see. This is all stuff that served to protect me in the worst situations. The problem with PTSD is that your brain doesn’t shut those defenses down once you’re out and safe. I don’t need the force once the empire has been defeated.

My mental illnesses make it hard to use hope. Neither that nor the fact that I have them are shameful. Those I see trying to push hope or always being positive haven’t been through some of the hard things that my friends and I have been through. There are no hard feelings there, unless you’re someone constantly pushing hope.

It’s ableist against those of us with certain mental illnesses. It’s classist against those of us who grew up in hard situations like poverty. And it’s inconsiderate of others to demand this one size fits all way of dealing with illness.

Every person is different. It’s true with meds and it’s true with how we process our illnesses and feelings. I won’t judge you for the way you deal with things if you stop judging others like myself who can’t process that way, if you stop requiring everyone follow your ideas.

 

Freakout Friday: problems with respect, empathy, and compassion in the chronic illness community

Lately there has been a good amount of frustration within the chronic illness community. Much of that surrounds a level of bullying that shouldn’t exist for us. After all, most of us are working towards the same goal – raising awareness and promoting research opportunities to get closer to remission and to cures. Why does it feel like everyone is turning on each other?

Why is it okay to give condolences to parents who have lost their children several times a year until the end of the world, but we feel open to telling those who’ve lost their friends to get over it at some point? Or that no one cares?

Why is it okay for people to tell you to just ‘get over’ incredibly huge events in your life? Or move past them? There’s a HUGE amount of work involved in that.

Why do some bloggers think it’s okay to use your information without asking, and then get upset if you ask for it to be removed? And then badmouth you to others in your specific disease community? (yeah, that happened a while back)

Why is it okay for people to dismiss your feelings?

Why is it okay for people to push positivity in ways that end up bullying those of us who don’t?

Why is it okay for people to discuss their own mental health issues and then belittle others for doing so?

Why do we demand explanations from each other?

Why do we make each other feel like explanations or issues aren’t worth crap?

Why do we talk to each other with disdain or in short sentences or dismissively instead of supportively?

Why are those who are physically active bullied for being able to do so? Why are those who aren’t able to be physically active told their contributing to their disease and essentially being called lazy?

Why do we treat each other poorly enough that some give up advocacy or blogging or being active in our communities?

I feel like this all boils down to a lack of respect, empathy, and compassion. Honestly, I’m so tired of it.

Maybe there are a lot of people out there who don’t know what these words mean?

These are all terms we expect our doctors to have and to utilize with us as patients… so why aren’t we treating fellow patients accordingly?
We demand these character traits not only in our doctors, but also with our co-workers, our families, and our friends. People like to tout how they don’t see their ‘friends’ in the chronic illness community as any different than their real life friends… I honestly kind of hope they do, because treating your friends in the ways described above isn’t alright. It isn’t alright to be so dismissive, judgmental, and inconsiderate of any living being’s feelings that way, but I would hope that people treat those close to them a little better than that at least. Being a bully on top of lacking these qualities is just sad, especially in this day and age.
And treating one friend like crap and then another super great doesn’t make up for the crappy treatment.
Step it up, you guys. Seriously.
The only way that we can change the health care systems in the world is to band together, to be a cohesive – and supportive – unit. So let’s everybody take a step back and examine your actions towards others and make sure you’re not contributing to the problem.