Inaugural Impact on Chronic Illness

This inauguration impacts everyone. But for those of us with chronic illness, this is not just incredibly stressful but potentially life changing.

With Trump as the new president and Republicans looking to undo everything President Obama has done in the last eight years…there is a lot of havoc to be wrought. Especially in relation to healthcare. The Affordable Care Act (ACA) could be repealed…the decision that it could be repealed was made in the dead of night in a meeting probably held in some deep dark Republican chambers while they were all playing poker and smoking cigars while strippers danced around them…Strippers who likely couldn’t afford health insurance.

If they repeal the ACA, they are destroying people lives. We (chronically ill, sick, everyone who is alive) are essentially being told that we are not worth anything to even receive basic human rights that should be afforded to everyone. The United States is so focused on the bottom line that it can’t pull it’s head out of its’ own ass long enough to think about what it is doing to the people it claims to ‘support’.

It just so happens that through osmosis many of my friends also have one or more chronic illnesses. That is to say that I had these friends before I was in such poor health. If I didn’t have a support system who already have health issues (like Becca, Shelby, and Nai), I’m quite certain I would be much worse off than I am now. Having friends who have special diets and chronic illnesses normalized all of it for me. Not that it makes my struggle any easier because it doesn’t. But it is much harder to adjust to life with chronic illness when everyone around you is seemingly healthy.

But back on point…am I to believe that myself, my friends and the millions of other people who can’t afford health insurance or who couldn’t get it because of pre-existing conditions aren’t valuable in any way? It’s preposterous. That whole pre-existing conditions in health insurance was the bane of the chronically ill person’s existence. When that went away…omgwecangethealthcare! butomgnowwemightloseit…

As it stands, I can’t afford health insurance. I get what I like to call Poor People’s Health Insurance aka Medicaid. This is provided to me through the state of Maryland because I make below  X amount of money every year. So what will happen to this program? I have no idea. I am terrified to find out. I depend heavily on my poor people’s health insurance. Could it be taken away from me??? It’s possible. The future of healthcare is uncertain.

I would like to add that the ACA is not ideal. It has huge flaws that cannot be overlooked. It’s expensive and it requires everyone to have health insurance, which in theory should be a good thing but it penalizes the people who can’t afford it. Impoverished people who can’t afford health insurance have to pay a yearly fine. For 2016, the yearly fine is $695 or 2.5% of your income, whichever is higher. WTF?!?! That is just beyond ridiculous. Although it should be noted that there are exemptions that can be made if you meet specific requirements. However, not all of the exemptions are automatically applied so if you don’t know about them you might get stuck paying the penalty fine anyways.

My point here is that ACA doesn’t work for everybody, that is a fact. There are also the people who can afford it but have large deductibles that ensure they do not get proper treatment until the deductible is met. Treatment is withheld until deductibles are met. Those deductibles could be as high as $7,000+. People are having to choose between treatment and food/home. That’s not exactly what I call ideal.

But do people care? probably not. And not about those who have a chronic illness. For those of us with invisible chronic illnesses, we might as well just be making up some fake disease…like purple lumpy spots or rainbow dragon measles…because often people don’t believe us. They are skeptical of us. You can’t see my migraines or the crippling pain in my bladder…but believe me it is there. I have no reason to lie about it. What if I had cancer? Would you believe me then?? probably. This brings up the issue of mental health for those of us with invisible chronic illness because it really does impact our mental health. Part of my health insurance covers therapy. I could lose that, which is incredibly disheartening to think about.

The stress of this inauguration makes me feel ill and gives me so much pain. That’s why I have been avoiding the news ever since the election. I can’t handle it. I know I am not the only one. I have friends who are in the same boat. If it’s been hard for me to deal with up until now… it’s about to get a lot hard with Trump being the actual President now. I can sit here all day and torture myself and make myself miserable…as I’m sure many others can and will do too.

But we need to be kind to ourselves. We can’t control what will happen. All we can do is try not to stress about it too much… because stress will only exacerbate our health problems and make us feel even worse. I know that’s easier said than done. But let’s just rest and gain strength for when we need it most. <3I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.

I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.

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image: posted by nudityandnerdery: Hey Everybody. Inauguration day might be rough. So here’s what I’m asking. You might remember it- Eat something. Stay Hydrated. Take your meds. Love the people around you. Get some rest. Don’t feel like you have to immerse yourself in the entire situation. Don’t be afraid to back off. Stop reading the news for awhile, put on some music you love, eat ice cream or something. Take care of yourself because that’s important.

 

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You’re pretty (sick)

Beauty is in the eye of the beholder. Can the same be said for health?

I think the average American would look at health and say either you are sick or you are not. And then they would look at someone like me (and this has happened before) and would tell me “you are too pretty to be sick/have a chronic illness”. But what is health? What is attractiveness? And is it all subjective?

Before my chronic illnesses degraded my health, I used to enjoy looking nice. I wore makeup, brushed my hair and wore nice clothes. But now that I have been in mass amounts of debilitating pain for months and months, I haven’t touched makeup in that long. My hair often goes unbrushed as I am just too exhausted or brain fogged to remember. And now my main method of choosing clothes is by comfort level. I can’t wear jeans or any kind of restricted waistband right now because it puts too much pressure on my bladder and pelvic floor. Now I stick to leggings (well sweater leggings for the winter) and sweatpants. Along with slip-on boots which I often need help putting on because I struggle to lift my leg up high enough to put my foot in. Fortunately, my boyfriend Aaron, helps me put my boots on whenever he is around.

But here is what I’m saying … I don’t feel attractive. I don’t feel pretty. I don’t feel like myself. See picture below of me looking beyond exhausted wearing my migraine hat, which is an ice pack wrap made especially for migraineurs. I have two of them, one that I keep at my home and one that I keep at Aaron’s home.  And as silly as this migraine hat might look, it really helps my migraines. Would I wear it out in public?  I haven’t yet, but I would ..yes.

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[Image description: a selfie of Rachel not smiling looking extremely tired wearing her migraine hat]
Isn’t that the thing about being chronically ill? You have to really make a lot of sacrifices and that includes sacrificing how you look. So now I no longer wear makeup or nice clothes…I have to wear migraine glasses in public which are okay but not exactly the fashion statement I want to be making. I get a lot of comments on them. But the fact is …they help reduce my migraines a lot and that is all that matters. Do I like the way I look in them? Not really.

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[image description: a selfie of Rachel with long red hair down and a focus on black rimmed glasses with pink lenses. migraine glasses]
If a chronically ill person goes out with people and passes for normal because they dress nicely and/or put makeup on…it’s very likely they will be accused of faking having a chronic illness if other people know about it. There is very much a prescribed notion of what sickness looks like. But I want to tell you that sickness isn’t always easy to see. I can easily hide my chronically ill-rundown-exhausted-look with some makeup and a bit of hair brushing. Okay, so even without makeup, I still don’t technically look sick.

But even still, How can I look attractive when I don’t feel attractive? I don’t feel desirable or wanted. This is not a new phenomenon or specific to me. There are blogs and articles dedicated to this issue, like How to feel sexy when you are in pain?

Just this morning I was in so much pain from physical therapy yesterday that I could barely move, let alone walk. I needed a shower so Aaron helped me. I couldn’t even lift my leg over the bathtub to get in, he had to help me with that and the whole time my legs were shaking. And still, he says I look beautiful and I’m like…yea not really. How can I possibly look beautiful when I am in this much pain? It makes no sense. But he says he knew what he was getting into since I told him very early on about my IC. I can only hope he knows what he is talking about.

When it comes to looks and chronic illness, another huge issue that tends to pop up often is weight. Because of my chronic illnesses, I have difficulty keeping weight on but overall it fluctuates depending on if  I’m in a flare. When I am flaring up really badly, I eat less and therefore lose weight…which is quite noticeable to those around me. People will say things like “Wow! you look so thin!” like it’s a compliment??? But I’m only this thin because I am in so much pain and couldn’t eat like I usually do. It’s this big vicious cycle.

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[image description: a selfie of Rachel wearing a Gallaudet sweatshirt with no makeup, hair up, looking exhausted]
 So do I feel pretty? no.

Do I feel pretty sick? You bet you sweet effing bottom I do.

 

A letter to my IC

 

[Image description: a calligraphy pen laying on top of a piece of paper with beautifully written wording on top.]

Dear Interstitial Cystitis, 

You have changed my life in so many ways; both good and bad. I hate to admit that you have done anything good for me. Although, I can’t think of anything off the top of my head at this exact moment.

But you changed my life and that is an undeniable truth. The agony and suffering you put me through is just unbelievable. I miss being able to just go to the bathroom and pee like a normal person. Instead, I have to continually tolerate what can only be described as white-hot burning razor blades mixed with shards of broken glass and laced with acid and/or the complete inability to pee altogether because my pelvic floor muscles are so tense that they are unable to release. 

I miss my life. I hate giving up doing the things I love to do. I hate trying to make plans and then thinking I might not be able to follow through because I will be in too much pain. I hate that even on a good day… I’m still in pain. 

So here we are. If this were a game, you would definitely be winning right now. You will not always have the upper hand, there will come a day when I come back at you swinging. But for right now I will bide my time and hope that I can take you down holistically.

Ungratefully yours,

Rachel Bob

This is a personal prompt: Write a letter to your illness or condition, from The Mighty, which is an online community for the disabled and chronically ill. https://www.themighty.com/