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Trying to Navigate Life With Illness When Your Family Doesn't Support You

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Most people are familiar with the story about a man called Jesus of Nazareth. One thing that stuck with me was that when he returned to his hometown after becoming widely accepted as the Messiah, he wasn’t that well-received. I remember my teacher explaining that Jesus’ elders and peers wouldn’t have seen him in the same light because they’d known him his whole life. The way many who struggle with chronic, invisible illnesses are treated by those closest to them strikes me as very similar, a sort of “Jesus Phenomenon,” if you will. The people who once changed our diapers and saw us struggling to learn to read, who bared witness to the time when acne was our biggest problem and speaking to a crush our biggest fear, for some reason seem to struggle to accept that something could really be wrong with us.

Many of the voices you hear speaking out, advocating for awareness and understanding, are people who are fortunate enough to have a loving and supportive family and partner. Understandable, since every day is a struggle to get through just the bare minimum. When it’s all you can do to just get by, and you don’t have anyone there for you, how are you supposed to find the strength to share your story too?

The reality is that many of us are left to rough it alone, because those closest to us just don’t understand or care to, and that’s something that should be discussed openly, rather than remaining taboo. I constantly get teased about being “lazy” and reprimanded for not doing more, told “everyone’s tired, but you just push through and do what needs doing, because you’re an adult and can’t expect anyone else to do it for you.”

I can respect that hard work ethic, but what about when you can’t do things for yourself? When you try to explain that it’s more than just being tired and you’re already pushing yourself as hard as you can, but pushing even more either just isn’t possible or will inevitably lead to what little health you still have deteriorating even further, they just don’t get it.

Well, can you blame them? If we’re honest with ourselves, we didn’t really understand what those words meant until we’d lived it. And, if most doctors haven’t got a clue, then how can we hold anyone else accountable? I know people who have been kicked out of their homes and abandoned by their spouses, and those people, the ones we thought we could count on, think they’re doing us a favor!

A chronic illness can crop up overnight or gradually over time. The nice thing about getting sick quickly is that you likely know exactly what caused it. Not only it is hard for the rest of us to pinpoint exactly when we got sick and what caused it, funny as it may sound, there’s also a period where you’re sick, but not yet sick enough to realize you’re sick. So inevitably, there was a time when I myself thought maybe I was just lazy and needed to toughen up. But now I know better.

Adding another layer of complexity is what’s called brain fog, meaning that even once I finally sensed something was off, I struggled to think clearly. At my worst, I even have difficulty speaking – I can hardly find the words and mispronounce the ones I do. Brain fog meant that, even once I finally began to suspect something was off, I went to multiple doctors over several years and every time they told me everything was fine, I just went home and forgot about it. It wasn’t until I realized that others could see me struggling to express myself that I knew for sure something was off. I went back to the doctor and insisted – if the tests all come back fine, then we need to be running different tests, because clearly something is wrong!

That meant it took me over a decade to ascertain that what I myself was experiencing wasn’t normal. Then I began ping-ponging from specialist to specialist, having every test imaginable done, but it still took the better part of the next year to figure out what was wrong. In that time, my health had taken such a turn for the worse that I had to stop working and it was all I could do just to get to the doctor and the grocery store. It would take another year before I could finally accept that the steep decline I’ve suffered might actually be permanent. I was hopeful with every new doctor and every new treatment, but every time I was disappointed. I wasn’t giving up – I continued trying to find a way to get my life back, but I realized the time had come to finally accept reality and the reality was that I wasn’t getting any better and I needed help.

But here I am. You’d think the people who claim to love you the most would see that you need help before you yourself do, discourage you from jeopardizing your health by over-exerting yourself, invite you to come home, reassure you that everything will be alright… instead I got comments like “If you’re not working, you’re not staying here. And if you’re too sick to work, you need to be in an institution” or “Still these games? Grow up. You really need to stop accepting this illness you’re claiming, using it as an excuse for sympathy” and “You need to take responsibility for your past choices and behave accordingly by finding suitable employment” as though I wanted this, as though this were something brought on by any fault of my own! As though I enjoy subsisting on the same five foods every single day and whiling away my existence in bed with Facebook my only real means of social interaction.

They still say they love me, but they leave me hanging when I need them most. How can that be right? How can that be family? I’ve always said I’m not asking anyone to go without to help me. I don’t hold it against anyone for not helping if they can’t afford to. But they could at least have the decency to acknowledge me contacting them, acknowledge my suffering, check in to see how I’m holding up, show a little empathy and offer some moral support.

I’m not saying I’m entitled to anyone’s home or money, but I can’t help thinking, if you have more than enough to live comfortably, how can you in good conscience stand by and watch me struggling, begging for donations to cover the cost of my next meal, constantly on the verge of homelessness, and still claim to love me? What have I done to deserve that? When have I ever cheated or lied or stolen or scammed anybody to be valued so little?

Of course, people wonder why I don’t turn to my family for help, because hasn’t our society taught us our families should always be there to support us in times of need? Well, clearly that must’ve been a Hollywood dream, because mine and many other families were not cut from the same cloth. And, as sadly common as this behavior might be, I don’t find it at all acceptable. If your own family is able but unwilling to help when you have no other option, what else are you supposed to do?

This post originally appeared on Uninvisible.

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Photo via Saadetalkan on Getty Images

Originally published: January 17, 2018
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