I have a right…

*Warning: this is not the most uplifting, positive post of all time.*

As a Lyme disease victim, I have a right. I have many rights. As does the average person.

As a Type 1 Diabetic, I have a right. I have many right. As does the average person.

As someone who is battling a chronic illness along with an autoimmune condition that can  be life threatening, I have numerous rights.

79d80414d16fd4cc134b3892926aa4c1I have a right to be angry. I have a right to be sad. I have a right to be depressed. I have a right to be emotional. I have a right to be confused. I have a right to laugh hysterically at how pathetic I may feel. I have a right to be upset. I have a right to cry. I have a right to yell. I have a right to be frustrated. I have a right to be uncertain.

I have a right to know my body. I have a right to have quality health care. I have a right to have my voice heard. I have a right to have doctors hear my complaints. I have a right to have people see my chronic illness, which can be completely invisible at times. I have a right to be treated like a human. I have a right to be talked to like a competent person. I have a right to be understood. I have a right to know my illnesses. I have a right to understand what medications I’m putting in my body. I have a right to see my test results in the raw. I have a right to be cared for.

I have a right to understand. As does anyone with an illness, of any kind.

I have a right to see. As does anyone with an illness, of any kind.

I have a right to know. As does anyone with an illness, of any kind.59d40369c7520ecc43b8ffc521e38900

We, the community of sick, struggling, fighters, must stand up and demand to be heard. We have a right to have a voice. Just because we are sick, doesn’t mean we don’t have brains.

Let’s stand up and fight. Fight for ourselves. Fight for our children. Fight for our siblings. Fight for our parents. Fight for our friends. Fight for a voice.

Lyme disease has stolen my life. I have had the ground ripped right out from under me. I have felt lost. I have felt defeated. I have felt depressed. I have felt sad. I have felt angry. I have felt frustrated. And I still feel all of these things. But, I have a right to feel those things. Nobody can tell me that I’m not allowed to be mad because:

  1. If you’ve never been in my shoes, you can’t tell me you understand. You can’t tell me that you know what I’ve been through. You can’t tell me that I’m not allowed to be mad if you’ve never experienced what I’ve experienced.
  2. If you’ve been in my shoes, you know that being mad is okay. You know that being mad is a natural response. You know that being mad is a way of coping with your situation. You simply won’t tell me that I can’t be mad.

Type 1 Diabetes has altered my daily life. It was extremely easy to manage when I was first diagnosed, but lately has been increasingly difficult and more time consuming. When I am tired and frustrated with my Lyme life, the last thing I want to do is stab myself just to eat something. T1D is not easy, but it’s manageable. To anyone who also has T1D understands that daily life is truly a new day, everyday. 26d9084b9630e97eb20ac47b8dbfea72T1D adds an element of uncertainty and surprise to everyday life. You’re never quite sure what tomorrow will bring. Will you deal with highs and lows all day long? Will you be constantly stuck in a low all day and feel dizzy all day? Will you be stuck in a constant high all day and feel moody and thirsty all day? What will tomorrow bring? T1D can be exhausting; and for me, I truly feel defeated sometimes. I feel like I’m failing when I forget to take my Lyme meds because I’m so worried about my blood sugar, or I forget to check my blood sugar when I need to because I’m laid up in bed and can’t move because of Lyme. T1D doesn’t stop when my body stops. Lyme doesn’t stop when T1D gets chaotic. I’ve learned that life is a learning process. We never stop figuring stuff out.

I have a right to be exhausted. As does anyone with an illness, of any kind.

I have a right to be confused. As does anyone with an illness, of any kind.

I have a right to want it all to just stop. As does anyone with an illness, of any kind.

It has been 6 years of constant injury and illness. I have been so low mentally that it’s scary to admit. I have gotten so good at waking up and putting a smile on my face, no matter what I am feeling. I have gotten so good at preaching positivity, that sometimes I forget to go back and deeply read what I write.

It has been 6 years of constantly dodging curve balls.

I just want to catch a break.

Is that so much to ask? Is it so much to just relax? Completely pain free? Completely worry free? Completely depression free? Completely happy?

I’m completely displaced from familiarity. I am completely removed from commonality.

Do we ever really just know? Do we ever really just understand? Or is life truly a never ending maze?

God, I pray that I find peace in the chaos. I pray that I find gratitude in the frustration. I pray that I see light in the darkness. I pray that I find strength in my weakness. I pray that I find concrete in the water. I pray that I find flexibility in the stubbornness. I pray that I find happiness in the sadness. I pray that I find love in the hate. I pray that I find faith in the uncertainty. Amen.

Sometimes all you can is just pray. No matter how terrible you may feel or how upset you may be, your prayers will be answered in time. God will allot you the perfect amount of time to grieve, to be sad, to mourn, to be angry. Then, He will provide happiness. He will make you stronger than ever before. If you pray, He will provide. If you open your heart, He will open your eyes. God will make sure you get the rights that you deserve.

Now, it’s time I start practicing what I preach. I was given this life for a reason. I am not mad at God for making me the way I am. He does not cause pain, he gives me the tools to battle pain. I do not hate my body, some days I just wish I could have a different one. I do not hate myself, though some days I just want to ignore my life. I have a right at a second chance. I have a right to remake myself.

I will make the most of my next year in Georgia, despite how upset I am about leaving Minnesota. I will be stronger because of what I’ve dealt with. I will love harder because I know what it’s like to feel unloved. I will be inclusive because I know what it’s like to be excluded. I will smile because I know what it’s like to frown. I have a right to be happy.

So here’s to countless more days of waking up, feeling like crap, slapping a smile across my face, and hearing the words, “Oh, but you look so good!”f2cdc0cf406d34a1bdb3aaae9896bd28

Keep on keepin’ on y’all!

Xoxo,
Elise Hendrickson

“She is tossed by the waves, but does not sink.”

P.S. “Oh, but you look so good,” may be a compliment to you, but to me, it feels like I’m being disregarded, that my illness is being disregarded, that everything I’ve been fighting for is being disregarded. It’s better to say, “It’s good to see you!” or “I hope you’ve been feeling better!”

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4 thoughts on “I have a right…

  1. Elise,

    I somewhat know how you’re feeling and agree with what you’re saying. I’ve never walked in your shoes, but sometimes my walk isn’t that great. I have had Fibromyalgia since 1989 and suffer chronic pain among other symptoms. LIKE YOUR SYMPTOMS, IT DOESN’T SHOW! We pray for your health and well-being. Don’t give up! God is always there. We all love you, Elise. Don’t smile unless you want to; don’t say “I’m OK” if you don’t want to; don’t get out of bed unless you want to. Just survive!

    Reggie
    (Your Grandma’s friend)

    Liked by 1 person

  2. People often think they are being supportive and are not aware that their idea of support is not really what a person being ill needs. In fact, that support is often contraproductive. One might try to teach them how to behave but sometimes they get offended and think they are not being appreciated. Give me what I need, not what you think I need.

    Liked by 1 person

  3. Can I say, “been there, done that?” Or “still there, still doing it?” Some days it’s all I can do to be thankful for the air I breathe, because that is all I CAN do. Hat’s off to you sweets, for your voice.

    Liked by 1 person

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