The Perfect Thing My Doctor Said About My Life With Chronic Illness

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My doctor sat at his desk facing his computer as he read through my chart and got updated on the various specialists I’d seen and the tests I’d had done since my last appointment with him.

He turned around and said, “So pretty much you’ve become a professional patient.”

It’s true. I’ve seen several new specialists lately and am waiting to see a few more. This is a good thing because it means that after years of trying to politely convince my doctors that there are other things going on, I’m finally getting somewhere. I don’t yet know exactly where that somewhere is, but I’m happy to be on my way all the same and I’m thankful for the understanding and committed doctors who are helping me get there.

But it’s still hard. I’m tired of waiting months for appointments to come up. I’m tired of playing trial and error with new medications. I’m tired of just not feeling well day in and day out. I expressed this frustration to my doctor, although I knew there was nothing he could do about it. What he told me, however, actually did help.

He said, “I know. But you’re doing a good job, and I think you’re handling everything really well.”

It was the perfect thing to say. There was no pressure on me to put on a brave face. There was no expectation that I should be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.

Catherine Richardson giving a thumbs up

Instead, there was awareness of the “chronic” part of my chronic illness. There was permission to be realistic and an understanding that I was weary. But it was also good to know that even though it felt at times as if I were stuck in place, weighted down by my illness, I was actually still moving forward.

And because of all that, I also felt encouraged. I was doing a good job. I could keep doing that.

It was exactly what I needed to hear, and I can’t help but think that maybe you need to hear it, too.

So I want to tell you that you’re doing a good job.

Maybe, like me, you’re facing a chronic illness or disability. When you feel like you’re running around in circles searching for a diagnosis, you’re advocating for yourself. When you struggle through difficult treatments and procedures, you’re giving yourself a chance at a better future. And when you find yourself facing a feeding tube, a wheelchair or any other medical device, you’re working within your limitations to be as well as possible and live a life as full as possible. You’re doing a good job.

Maybe you love for and care for someone with a chronic illness or disability. When you’re breaking down the walls of your comfort zone in order to learn to care for your loved one, you’re working to accept your new normal. When you’re putting in hours of planning and preparation to help your loved one carry on with life as normally as possible, you’re proving that a challenging life can still be a meaningful one. When you set aside your exhaustion, pain and fear to help your loved one through those feelings of their own, you’re teaching them how to be resilient. You’re doing a good job.

We’ve all got something. It doesn’t even have to be illness or disability. We all have things in our lives that are hard.

Sometimes we get defeated. Sometimes we’re angry at our circumstances and feel sorry for ourselves. Sometimes we compare ourselves to others and get jealous of those who appear to have it easier. And that’s all OK, because other times our spirits triumph. Other times, we choose to laugh instead of cry and choose to be grateful for what we do have instead of feeling bitter about what we’ve lost. Other times, we reach out and take everything we’ve learned through our struggles to help someone else face their own.

We don’t have it all together all the time. We’re not supposed to. But we do what we can. We do our best.

So don’t be afraid to give yourself some credit and acknowledge your own strength. Don’t be afraid to give yourself the affirmation that you need. Whether you’re thriving or simply just surviving, you’re doing your best.

And you’re doing a good job.

Catherine Richardson holding sign that says you're doing a good job

Read more from this author on her blog, Finding My Miracle.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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How a Friend's Simple Text Let Me Know She Gets What I'm Going Through

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Being chronically ill in college comes with many obstacles. One of the hardest ones is avoiding “normal people” illness. Being an education major makes this even harder. I spend lots of time in elementary schools. It’s safe to say there’s always something going around. On top of that, no one ever wants to miss a class. My classmates come in sick all the time. One of our professor once came in and told us she had a low grade fever.

For me, this is scary. Let me give you a little history of what’s happened to me when I’ve gotten “normal people” sick while being chronically ill. In high school, I had a small cold that was only bad for a couple days but then triggered a joint flare, forcing me to miss multiple days of school. I ended up needing a completely new medicine regiment. The infection also backtracked my hip surgery recovery. A year ago, when I had a simple viral infection, my gastroparesis was triggered; now, I have a feeding tube. Without knowing this history, most of my peers think I’m crazy for never leaving my apartment without hand sanitizer and carrying around a travel-sized Lysol spray.

Most college kids don’t think twice about coming to class sick and don’t realize how it may affect those around them. So last night when I received a text from my friend starting with her saying she had a low grade fever, I assumed she probably was asking me to take notes for her or come over after class to help her catch up. When I woke up this morning and read the whole text with fresh eyes, I found out she was letting me know because while she couldn’t miss class, she wanted to warn me to stay away from her (we usually sit next to each other). She didn’t want me to get sick.

I don’t think she realized how much I appreciated that text. Not only did I avoid a bug but I also saw that she really understood my challenges.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Please Don't Say These Things About My Daughter's Invisible Condition

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My teenage daughter has lived with chronic pain and illness for more than five years. She used to be a completely carefree child with a little illness here and there but a lot of injuries. At age 10, on one fateful day, one of these injuries became constant pain. Soon after, that constant pain trickled into more and more symptoms. It wasn’t long before chronic invisible pain attempted to shatter my little girl. Through all of the symptoms and scary times, a girl I’ve named my “Smiling Warrior” emerged. She lives in a land I’ve named “Abnormal Normalcy.” She’s my hero.

Many days, I wish I could make the world understand the concept of “invisible.”

 “She looks so good.”

 “I thought she was doing better.”

 “Won’t she outgrow this one day?”

 “Have you ever tried _______ [insert juice, new supplement, shake, etc.]?”

 “Oh, my grandma has that problem.”

I share.

I educate.

I advocate.

Does anyone even here me?

Sometimes I wonder.

My mind is so divided. One part of me wants to grab (and shake) each and every person who just can’t seem to get it. Another part of me wants to not even care what anyone thinks they know.

I’m beyond aware this is all difficult to comprehend. It’s a puzzle beyond challenging. It often makes no sense at all. And silly me expects my words to be listened to and even taken as truth.

This is my child’s reality, whether you choose to understand it or not. I wish we didn’t have to attempt to understand the absolutely bizarre, but we do, because it’s our daughter’s life. The research never ends. The support, education and advocacy which allow her to live this life has become my life.

I say, “She’s hanging in there.” or “It’s ups and downs.” We just keep on going.

Fortunately, here and there we see a few glimpses of better — sometimes hours, sometimes just moments, but that better never means freedom from her dysfunctional body. That bettercomes with a high price. Decisions on pacing and balance have replaced the impulsiveness and carefree nature of youth. I’m grateful for what my Smiling Warrior has in life but also stung by what she’s given up.

There might be times she looks good. (She’s mastered presentation of the shiny facade for the public.)

There may be times that she is doing a little better. (Because she gave up trying to do it all or even half of it.)

She’s not going to outgrow this. (But she’s learning every day how to grow with this.)

We’ve tried so many things. (But longterm solutions aren’t found in gimmicks.)

And please don’t compare her symptoms to your aging problems because she is a young girl and not an old woman (although she often says she feels trapped in an old body).

So, onward in the land of Abnormal Normalcy, where the only consistency is the inconsistency.

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Gastroparesis, I'm Taking My Life Back From You

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Dear Gastroparesis,

I writing this letter to let you know that our time is through. You have been with me for over two and a half years now. I will no longer be treated the way the you treat me. You have taken nearly everything from me, and have given nothing in return. This is why you must leave.

When we first got together, long before I knew what you were, I thought OK, well, this is not the best relationship ever, but you still allowed me to eat and drink, only giving me pain every now and then. Still, before I knew what you were, you decided that this was not enough. You now wanted me to limit how much, and what I ate, or you would become angry and abuse me with your pain, and occasional nausea. This still was not enough for you. You made the choice without even asking me to rob me of basically all food, even liquid, or you made sure I paid greatly with your pain. You did this until you nearly broke me. You left me malnourished, weakend in every way, and bedridden. You forced me to seek my nutrition from elsewhere.

At one point, I thought maybe, just maybe, you had seen reason. I still could not eat, really, but I had energy that was never there before. My pain was all but gone; even the nausea greatly improved. I was willing to accept you into my life again. I was stupid, and ignorant in thinking that you would let me be. Nothing was ever too much for you. The feeding tube got pulled and you took control. You knew just how to get to me. Not only that, you decided that I need to gain back some of that weight that I had lost, even with barely eating. You were cruel and selfish.

Even after getting the tube replaced, you wouldn’t leave me alone. Not only was the pain and nausea not enough for you, but now you wanted me void of everything. Everything I ate made me so sick that I had to rid it from my body, in manners most unpleasant. Not only that, but you also would not allow me to gain my necessary nutrients by tube either, once again robbing me of all that I had.

You make me stay in the house, often bedridden, and when I do decide to venture out, you make me pay dearly for this. You have robbed me of my friends, my family, even my sanity at times. You have made me so depressed that I no longer wanted to participate in life. I am not the only one you have done this to. You have also taken the lives of my friends. You continually abuse them, just like you do me.

tracy thomas smiling at camera

Well, I say NO MORE! You are no longer allowed in my life. I will NOT let you tear me down. My life has no need for you! Nor do I EVER want to see you again!

I will fight to eradicate you, and to make you and your way of life known. People WILL know of you, and there WILL be a cure. You no longer hold all the cards, my friend. I am taking over, and I will not be satisfied until you are a long-lost, forgotten memory!

Signing you away,

Tracy Thomas

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Don't Have Control Over My Condition. Here's Why That's OK.

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Gastroparesis,

I’ve had my “fake it till I make it” face on for a long time. But I’ve found grace in this journey. So, thank you.

Yes, thank you!

You will not win. I’m no longer a people pleaser, and I’m no longer living for the approval of other’s or wondering what they think.

So, for that, I thank you. I had compassion, but now I have more. I had patience and peace, but now I have more.

So you see, gastroparesis, you cannot win this battle with me.

Even when I have no control, it’s OK because I never truly had it. So what more do you have to say? My peace lives in a place where you have no claims.

See, the adversity you brought to me only brought me strength. No, not physical strength, but the important kind — spiritual and emotional.

So gastroparesis, you can’t define anything about me because you don’t even really know me.

Sincerely,

Diagnosed

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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A Breakup Letter to My Life-Altering Stomach Condition

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Dear Gastroparesis,

I hate being your slave.

You are so demanding and such a control freak. You want what you want, when you want it, and you never even ask my opinion. I make plans, and you cancel them. I try to complete chores, but you sap my strength and demand I focus only on you. I try to eat, but you are full. I want to sleep, but you keep me up all night with your grumbling. You demand my complete attention and all my time and energy. Well, I tell you, I have had just about enough, and I really think it’s high time for you to leave.

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You keep me prisoner in my own home. I have lost my social life because of you. I can rarely go out with my family and friends for a meal, or a movie, or even a simple walk in the park. No, you won’t have that. You make sure I have no clothes that fit and no energy to do my hair and makeup. I barely look presentable. And on the rare occasions you do allow me to leave home, you make certain I don’t stay out for long. You punish me if I try.

I dread coming back home because I know you will be waiting for me, ready to inflict your pain and abuse. I will have to endure your wrath for days for such indiscretion. It is hardly worth leaving.

At first, I thought I could reason with you. If you only knew how much you were hurting me, I thought, you would surely stop. But you don’t care, and in fact, you seem to get more abusive as time goes by.

Then I thought maybe I could appease you if I only behaved myself. I have tried to be good. I eat only what you tell me to, take the proper medications, follow your training regimen to the letter — but it’s not enough. So, I have come to the conclusion you simply must go. We are no good for each other, and this relationship clearly cannot last long-term.

I would like to say I will miss you, that I am sorry, that you will take a piece of my heart with you when you go, but, the truth is I will be glad when you are gone. I don’t think I will miss you for a second.

I will say, though, despite all the pain you have caused me, there have actually been a few positives to our relationship. They can’t make up for all the bad, but they do help me feel as if our association hasn’t been a complete waste of time.

For one thing, you have taught me compassion. Before you came along I thought I knew all about kindness and caring, but I was mistaken. Since you have come into my life, my eyes have been opened to incredible suffering and agony, and I have learned it cannot be ignored.

When I see it in others now, my heart goes out to them in ways it never could before. It gives the phrase “I feel your pain” new meaning.

Because of you, I have met so many people and made so many friends — albeit online-only friends due to the jail cell to which I have been confined. But I have formed deep friendships that will last a lifetime. I now know the kindest, most caring, compassionate people in the world, thanks to you. The bonds I have forged can never be broken.

Thanks to you, my faith is stronger than ever. It has to be. If I didn’t believe there was something better waiting for me, somewhere out there in the future, I don’t think I could make it through the day. It sounds crazy, I know, but I have a sense of hope now that was missing from my life before. I believe something better awaits me, and I have a deep peace about the future that I never had before you came into my life.

Lastly, you have given me the gift of purpose. It is crystal clear to me now why I am here and what I must do. I am an advocate, and I will not rest until I help the many people you have tried to tear down with your relentless cruelty. No, I am not the first person you have mistreated, and I am sure I will not be the last. But they will know about you now. They will know your history and your wicked ways. They will know you mean to destroy them and steal their lives. I will not stop until you are alone, empty and wholly defeated.

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No I will not shed a tear when I banish you from my life, though we have spent much time together. You have been my companion, but you have been a miserable one — one I will not welcome back into my life again. So, please pack your belongings and don’t look back. You are no longer welcome here.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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