The inconvenience of chronic illness

“I’m sorry, I’m still not feeling better.”

“Sorry, I can’t come to the party.”

“I can’t go out to eat, my diet is restricted, I’m really sorry.”

“I can’t go to the wedding, I’m so sorry, I’m too sick.”

The repetitive burden of chronic illness grates on my nerves. I don’t think people realize — and I can’t blame them for not realizing — that having to say no repeatedly wears down something deep inside me that further scrapes away at what there is of my humanity. Being chronically ill, so much so that I’m stuck in my home a lot of the time, is my biggest burden.

I am also a burden. I see the disappointment in their eyes when I say no. I grow frustrated when they try to think of ways around it with good intentions. Going out always has to involve eating. Going out comes with the fear of being a disruption if I have to leave early, and since I can’t drive due to a panic and dissociative disorder, I mess up the whole outing because someone has to drive me home. Socializing outside my home involves pushing past that invisible wall that juts up in front of me that I call agoraphobia, and if I do manage to get past it, I am exhausted and dissociate through the entire day. I remember it in bits and pieces like a forgotten dream, and then I come home and crash for a few days to recover.

Others around me think that if I just make myself go, I’ll start to get better. I’ll see there’s nothing to fear. ‘The weather’s nice today, I hope you’ll go for a walk at least.’ ‘One of your life stressors was solved, so that means you’ll be able to go to the thing I want you to.’ ‘It’s all in your head, it’s just your anxiety holding you back.’

Okay. I go out and eat, and I come home in severe pain. I get acid reflux and my heart skips beats, and I’m running to the toilet several times as I grow lightheaded and faint. It takes me days to start to recover as I stay close to a couch or bed, unless I pass out from my digestive system being in chaos. Dysautonomia’s revenge.

I go for a walk. I have to turn around after a few minutes because my anxiety has spiked and I feel faint, I feel out of breath, and I begin to dissociate and nothing feels real around me. My ankles are burning from the possible nerve damage in them, and if I decide to push on anyway, later that night, the nerves in the bottoms of my feet start a stabbing sensation, and my legs hurt so bad I want to cry.

I go ahead and assume that maybe, maybe, it is just anxiety after all, and it’s all in my head. And I ignore my health and force myself to be social and do things, and I end up in bed even sicker than I was before.

Finally, I start to look after myself and put myself first. My needs are important. I advocate for myself harder than I ever have.

‘Sorry, you don’t qualify for this help because we don’t accept your insurance.’ ‘Sorry, you don’t qualify for this help because you’re not old enough.’ ‘Sorry, you don’t qualify for this help because you’re not the most extreme case of physical disability.’ ‘Sorry, there’s a waiting list and it’s a couple years long.’

Doctors keep forgetting to follow through with forms. Doctors won’t lift a finger to do a little research to find me the help I need. Lawyers can’t help me get on SSDI even though I qualified for it at one point, but the social security system delayed my case for so many years by calling me a high maintenance liar and I lost the benefits I paid for. Being disabled on SSI is different, you don’t get all the benefits a disabled person on SSDI has. I watch my disabled friends who were able to work longer get free household items, peer support, free gym memberships, and a lot of help.

I sit here with $941 a month and barely enough food stamps to cover one month of food, as long as I barely eat. My insurance covers my doctor visits and my medication.

The only difference is my friends weren’t discriminated against, and I was. The judge said I was too young and pretty and talented to be disabled. I was just overly dependent and high maintenance. I was lying about attempting suicide and hurting myself, despite the numerous scars on my arms and the hospital records the social security administration refused to process in time for my court dates.

When my nerves are frayed and I’ve exhausted all options, and I’ve tried my hardest to get help or get better, I’m zapped and I can’t do anything. The depression sets in, I become suicidal because there is no help for me, and I rot away at home in isolation because my needs are always second to everything else, and I have to argue with anyone to be believed. I fall back into a regular pattern of worrying if I’m doing enough to be considered a good friend. I watch as people’s smiles fall from their faces when I decline, and I grow silent when they send back depressed emojis. I grow evermore tired when I realize that being disabled has made me a bad friend.

Their emotions are always centered. Their emotions and wants and needs are always expressed first. It’s not that they are meaning to do that, either; it’s only human to be disappointed when someone you want to see and spend time with just can’t do it in the way you want them to. Yet, I sit here wondering when my needs will come first, as selfish as that is. When will that anxiety leave me when I decide my needs matter? When I sit here and wonder if someone will check on me today, to just see how I’m doing. To ask if I might need a little help, or to ask if we can hang out in a way I’m able to.

When will they stop assuming it’s just my anxiety or it’s just a matter of a few weeks and I’ll be better and can go back to normal? I don’t have my old normal anymore! And if I get angry, it’s ‘woah, hey I didn’t mean it like that.’ Maybe I’m angry because I feel like I’m constantly having to consider others’ needs before mine so I don’t lose friends. Maybe I’m exhausted because I’m so scared of losing the few friends that I have, who I love and care about, so I put my health and my needs aside in the only ways I can to put them first.

Maybe I’m screaming inside constantly because people don’t notice when I’m doing this. They just continue on as if nothing is wrong while I’m falling asleep. They continue to vent and talk about their life and problems while I’m going through an episode or in pain, or if I’m dissociating completely in order to be there for them over myself. And if I stop them and apologize because I’m really struggling and I can’t put up the mask anymore, I can see the guilt or the disappointment they feel; when I say no. When I never go out with them. When I finally say, hey, I’m suffering alone and I’m scared and I’m trying, even if that trying isn’t good enough or doesn’t look like enough.

Even for those who mean well, I know I am a burden. I once asked for help on Facebook, to see if someone could help me clean my house once a week for just one or two hours. I couldn’t pay much, and I was told no one would help me for that little in return.

I have nothing more to give, and kindness comes with a price. And if it doesn’t come with a price, it’s from a disabled friend who has enough of their own stressors, and I’d feel terrible adding to their list of chores. Yet, I can’t qualify for any help because I fall in this fucking gray area after the government treated me like shit.

I go without clean laundry when I’m too sick to do it myself. I let my health problems fester because there is no way to get into my doctor any sooner than the month out I’m scheduled for, or longer. I sit in fear hoping what’s happening to my body at that moment isn’t serious, because I’ve been seeking proper diagnoses for several years and don’t know what’s happening to me, other than a loose idea discussed with my GP. And I send so many messages about my health and about medications not working, only to eventually be told I need to call to make an appointment.

And then, when I become suicidal because I’m carrying so much weight on my shoulders while trying to appear fine for others, while keeping it to myself so I don’t become more of a burden, I get the patronizing tone I know all to well, like my healthcare team suddenly decided they were talking to a child in a soft tone. “Do you have plans to hurt yourself?” “Have you been feeling like you want to go to sleep and not wake up?” “Can someone call you to check on you for a couple of days?”

It boils my blood when I hear the shift in tone with doctors. Suddenly, they’re speaking softly and carefully like I’m an infant, and then after the few days of obligation are up, you don’t hear from them again because they didn’t actually give a shit, they were just doing their job to make sure you didn’t become a liability on their medical license.

Maybe I wouldn’t be thinking about suicide if I didn’t feel like my needs didn’t matter, if I didn’t feel like I have to figure out how to get better for everyone else. If I didn’t have to focus on healing so I can do things for others, or to make others happy.

Sometimes, I just wish I could come first for someone. Sometimes, I wish I felt like my healing journey had more of a purpose to me than just doing so to be acceptable to everyone else and their standards. To no longer be a burden.

©2024 Shane Blackheart