Monday, May 9, 2016

My Chronic Illness is Not a Weakness

Lately I have been staying away from social media for the most part - especially Facebook. Pinterest and Instagram are pretty benign usually, so I feel like those are safe places to venture, from a mental health perspective. But then every now and again someone I follow and love will post something that is completely triggering to me, like this:

"Asking for help is not a sign of weakness. Suffering in silence is."

Now, on the surface, and to the first part of the quote, I'd say yes, this is true. It is not a sign of weakness to ask for help. I completely agree with this.

"Suffering in silence is (a sign of weakness)."

A Healthy Place
Herein lies the problem. This kind of statement is reductionist thinking. It assumes SO MANY THINGS about a person's situation. It implies privilege: The privilege to have someone to ask. The privilege to be able to ask. The privilege of having resources. The privilege of having your needs met. The privilege of community.

I cannot tell you how many times people with chronic illness DO try and reach out and ask for help, and are met with nothing but platitudes and lovehearts on the internet and basically "we can't be bothered, but we're sending our prayers..." And hey, I'm all for sending prayers and good energy and good vibes - that DOES make a difference. 

AND. I'll just use my own life as an example here: we really need someone to come and mow our lawn, clean up the sticks around the yard, trim our trees, trim the hedges around our house, clean the inside of the house, organize around the house, clean the RV, finish painting the RV, assemble all the RV cabinet doors, move everything into the RV,  help us get groceries, cook, take a bunch of stuff to donate and to the recycling you see where I am going with this? Lovehearts and prayers aren't going to get this stuff done. Money would help, because then I could pay someone to help, but it would need to be monthly infusions of money, not just one time. These are ongoing tasks that need doing all the time, not just once or twice. (Until we get the house ready for market and sold).

See, that's the difference between families with chronic illness vs families undergoing a single event trauma. I've noticed there is a LOT of help for single event traumas - a death, a birth, a move, a marriage, a divorce, a fire, a broken leg, a surgery....these are things people will rally for. There will be meal trains and lawns mowed and donations and needs met. As long as it's on a temporary basis. But when a family is afflicted with a chronic illness, and can't necessarily afford to pay a housekeeper or a caregiver or any of the many things that need doing, basically what happens is everyone just sort of disappears. The help well runs dry really fast. And that family still needs help, possibly more than anyone could ever imagine, because if there IS one able-bodied adult in the family, that adult suddenly is doing the job of five people rather than just the one they were doing before.

And because it is not physically possible for one person to do the job of five people  a LOT of things fall through the cracks. Like housekeeping (because buying groceries and feeding your family are more important than vacuuming, and yes, you DO have to choose).

And you might say, "Well, why don't you just ask your friends for help?" Believe me, many people HAVE said this to me.

To which I would answer, because none of them are able-bodied enough to help. You see, we had just moved to this state when I got REALLY sick, and we don't really know anyone here other than my husband's coworkers. And they, unfortunately, are NOT a resource we can turn to. I am mostly homebound, and most of the community I have is also online, chronically ill, and homebound - which means they are all in the same position I am. They need the help as badly as I do. I have no family here, and the family I do have is also in the same position - different illness, same needs. We do not belong to a church, we are not part of any community groups. We are an island of our little family. 

I DO have friends where we used to live, and I'm sure that if we were still in any of those places, those friends would help - but that doesn't do me much good here, hundreds of miles away from them.

Other reasons : If one is chemically sensitive and/or has mast cell activation issues like I do, it's not as simple as just letting anyone in the house to do anything. They need to be someone we don't react to. Completely scent-free. Not just perfumes, but also detergents, makeup, hair products, clothing, lotions, all of it. And not just scent-free but also chemical-free. No petrochemicals. No gluten. 

This may sound easy and simple but believe me, it's anything but. We've had a hell of a time trying to find a realtor to sell our home because of my sensitivities, even though once it's on the market it won't matter because we won't be in it. We need someone to be that scent and chemical-free beforehand, though, because there is paperwork and showing the realtor the home features and whatever else needs doing with them. This includes their car, because whatever is in their car will be on their person once they've ridden in it. And their purse, if they carry one. Purses are notoriously filled with chemicals and scents. And jackets, that never get washed.

The yard is a little easier because they won't have to come into the house - but even then, if the landscaper is wearing a lot of cologne and my husband goes out to speak with them, he will have to change his clothes before he can come into the house - do you see where it begins to get complicated? 

And if you're thinking why not just ask people to be scent and chemical-free? Believe me, we have. Thus far, several realtors have refused to work with us, and we don't have the spoons to keep reaching out over and over again. And this is just the realtor - someone who will make lots of money off of helping us. Then there were the ones who insisted they WERE scent-free, but literally the second they got out of their car nine feet away from me, I could smell them, and immediately began to get a migraine from their perfume (or detergents or Febreeze or whatever in the world they were drenched in - that they kept insisting they weren't wearing.

We DID finally find someone who has the same kinds of health issues in their family, and if we can ever get this house ready, she will work with us. But it literally took us months of searching, with the limited and nonexistent resources and energy we don't have, to find her.

But without anyone to ask, without a community, how on earth are we supposed to get this house ready to sell? My husband works a full time job outside the home. When he comes home, he makes dinner (I am no longer able to cook or prepare food), plays with our son, runs errands, does whatever tasks he can manage before he has to go to bed and get up and do it all again the next day. His weekends are spent playing catchup, just trying to put a dent in the myriad of things non his ever-growing, unending to-do list, because even though we need to get the house ready to sell, there are still ALL of the maintenance things that need doing from everyday living in a house with a family.

I'm homebound. I cannot drive anywhere anymore. He has to drive me to all of my appointments, cook my food (I'm on a very specialized and specific allergen-free diet to try and manage my reactions, allergies, and inflammation), play with our son, take him to all of his events and appointments, do all the outside work on the house, and all the cleaning, and and and....he is exhausted. He gets no time to himself, ever. Believe you me, if there were anyone at all we could ask locally, we'd have no shame in asking - WE NEED THE HELP. BADLY. But when there is no one to ask, how is it weak not to be asking? 

Image © Gemma Correll
We don't have the privilege of resources, or community, or even having anyone to ask. And we are not alone in this. I have an entire community of online friends who are chronically ill and in the very same boat. We aren't weak. We are warriors. We are fighting a battle every day that everyone else has abandoned us to fight alone. We need our friends more than we ever have, and they have all but disappeared. We reach out, we say, "Hey, we're drowning here," and we get crickets. Eventually we stop asking because the rejection hurts more than the isolation does.

It's not our fault. We didn't ask for this. We want to live lives of joy and fulfillment, not quiet painful desperation. But we weren't given a choice. It's easy to sit there on your high horse and judge people for not "just doing what you tell them" (like asking for help), but how about reaching out and helping someone who is struggling instead? How about making the effort to help someone who really needs it, instead of judging their choices? It's impossible to know what these families are going through without living it - it's easy to say "why don't you just" when you have no idea what it's like to experience what they are experiencing.

One thing people really need is just to be believed. If you do offer help, even, and if the family says, "That won't work, but thank you for the offer," it's because logistically what it might take that family to accommodate the help might be more than they are able to manage, with everything else. It's this weird double edged sword - we need the help, but sometimes our sensitivities won't allow us to be able to manage it - it's difficult and unfair.

But still offer if you can - sometimes even just knowing that someone is willing is everything to us. And not all chronic illnesses involve having such sensitivities. 

1 comment:

  1. Thank you for writing about this! You are always so insightful! It is so true that most families dealing with chronic illness DON'T have the support net that is required. I have been so very lucky to be immersed in families and friends who want to help. And still, it is not enough...that's not to say I am ungrateful! Not by any means! It just means that my friends and family cannot possibly do all of the things that need doing. My best friend moved in with me when I really got sick, because she knew she would never be able to do everything that would need to be done unless she came home from work every day to my house. Lucky for me, there are lots of people in my life who tell me they want to help out "any way they can". Unfortunately, they don't really mean it. I don't mean they lie to me, I only mean they cannot possibly know everything that needs doing, much less take care of it all. Truly, as you say, money would be the most beneficial, but no one has that kind of "extra" money to give away. Sometimes all that it is possible to offer are prayers and well-wishes, and so I remain grateful to all who offer a kind word. Only know that it is never enough...can never BE enough...and that I thank you all for what you have offered and will offer in the future.


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