Dear Doctor - From a Chronic Illness Sufferer

Dear Doctor,

It’s hard for me to sit and tell you how I’m feeling. It’s hard for me to explain my pain. I live with it every day. I work through it. I struggle with it. I ignore a lot of it. It’s hard for me to just tell you because most people don’t really want to know. I understand it’s your job to know, but it’s become my job to deal with it. It’s become my job not to tell people how I “Really” am when they ask “How are you?”

Sometimes you look at me like I’m crazy. Maybe you don’t, but that’s how it feels. So many doctors have judged me. So many have tried to deny my pain and the struggle I’m in. So many place their own feelings on me. They think I am depressed because maybe they would be if they lived with my struggle. I’m not. I’m actually in a good place. Please keep your mind open to the fact that I do know my own body and I do know what I’m feeling.

I’ve been sick long enough now that usually I recognize what is wrong before you do. I’m sorry. I live in this body. If I come to you for help then something is REALLY wrong, because I don’t cry out anymore over every little thing. I’m grateful for days when my pain is a 5 and not an 8 or better. Keep in mind, I don't even remember a 0. My normal is a 5. If I come to you hurting and asking for help, then I’m really in a bad way. I suffer from long term CHRONIC pain. I don’t ask for help for anything less than a 7. I’m used to those days.

I know it’s your job to help me when you can, but please remember that my whole life (at least the part that’s been spent with these illnesses) has been a job of learning HOW to live with these illnesses. My life has become a job of living. If you can give me some quality, that’s really all I desire.

Now let’s be real for a second. There are times, especially when I’m in a bad flare, that I’m going to be depressed for a bit. There are times when I’m going to be negative and crabby. I don’t like having these things. I don’t like that there isn’t anything I can do to permanently rid myself of them. But I’ve accepted it. Just because I have an off day doesn’t mean I need anti-depressants. I’ve struggled with depression before and I’ve even needed meds for it before but a bad day or a bad week doesn’t mean I’m there again. Please trust that I will tell you if I get there.

I have come to a place in my life where I just want to live today and enjoy today. Long term planning is a thing of the past for me and well it should be because I never know what tomorrow is going to be like for me. So please understand that I don’t want 1001 tests to make sure there isn’t something else wrong with me. Trust me when I say the list is already long enough. I promise to do my best to get some tests done once in a while, mostly to satisfy your needs. If something new crops up I promise to address it and take your advice. But I have lived with these illnesses a long time. I know them in and out, mostly, and I’ve come to acceptance. Acceptance allows me to live and be happy. Acceptance allows me to LIVE. And with your help I can live and have a bit of quality to that life. But the 1001 specialists and test only serve to remind me how much is wrong. I don’t need a reminder that I have a list of diagnoses that there is no “cure” for.

These are all things I cannot say to you, but need to be said. I need you to understand. I need you to care that today is what matters to me. I need you to work with me and MY needs. I promise to try to satisfy some of your needs or requirements if you can just help me not to be medically overwhelmed. And that is what it does when we try to deal with too much at once. If you need me to have a test or see a specialist, please tell me why. Explain it to me and then listen to how I feel about it. Talk with me and let’s make decisions about MY body and MY care together.

I live with CHRONIC, LONG TERM, illnesses. I don’t like it. I didn’t ask for it. And, honestly, I’m doing my best to live with it all and not let it take me out of the game. I think the most important thing you could take from this letter is that I need you to work WITH ME and talk TO ME. Don’t work ON ME and talk AT ME. I am old enough to remember the days when one only went to the doctor when they needed to and I wish I still had that luxury, but these illnesses mean we have to see each other a LOT more often. So please work with me as a team and I will work with you.

Thank you.
Chronic Illness Patient

Mother

I remember being 5 years old and looking up at her. I want to be her, I thought. She was beautiful in my eyes. I wanted to someday have her body and her beauty. I believed that she was an angel on earth, for her beauty to me was so amazing. Her love and kindness gave me safety. She tucked me in, drew me pictures, stayed with me in illness, played games with me. She was more than an angel.

I don’t remember the age, but I remember there being no more games. She hates me, I thought. Did I do something wrong? Had I broken this angel? Was I bad? She wishes I was a boy, I thought. And I retreated into my own space. I couldn’t understand that adults go through things that children don’t see, couldn’t comprehend. I didn’t know, and still don’t know, what struggles she was enduring that pulled her away.

And then I remember being 14 looking straight at her. She will never understand me, I thought. In my eyes she had changed. She had become this distant being who existed only to torment me. I couldn’t understand that her beauty still existed, but it was hidden from my teenage eyes because in my teenage mind I had twisted her intent and mixed up her meaning. I was lost within my own reality and she within hers. The truth was I could not understand her.

At 19 I watched her suffer the greatest loss she could endure and survive it. How will she cope without him? I thought. Her soul mate gone I broke inside for her. But her strength and perseverance was nothing short of astounding. I saw something so different in her and, even though she still didn’t understand me, I began to understand her just a little.

Again at 20, I looked at this amazing being in my life. Thank God for her, I thought. She had survived my teenage insanity and still cared enough for me to help me in my greatest need, motherhood. My child, with colic, screamed every 2 hours. I was dead on my feet, easily upset, and exhausted. This angel floated in several times a night to care for my child so that her child could rest.

At 38 I forgave her and I forgave myself. I want to have a relationship with her, I thought. The distance between us had not changed. That was partly my fault and I knew it. She was still beautiful. For so long I thought she hated me, but really I hated myself. At 38 I finally let it all go. We started over.

Now, at 44, I look at pictures of her. For I have moved far away. She is beautiful, I think. Even now,I want to be her, I think. Her strength over the years has endured and impressed me. Her patience, though I never realized how much she had, is incredible.

at her advanced age, her beauty radiates from her like rays of the sun. She looks happy in pictures.

I will never be her, I think. Though my husband says I resemble her and have her beauty. He swears he married me because he knew I would be as beautiful as my mother. We are different and that’s okay. I have my own strength, developed through pain and loss and necessity. I have my own patience, developed through time and circumstance. She helped me become this person I am and I’m grateful for that because I like who I’ve become.

I Have Paper Towels

"We really are doing just fine. I mean years ago I would have loved to have paper towels but to us they were a luxury that we couldn't afford. Now I can just reach up and grab one when I need it."

The statement above was said by my husband shortly after a very LONG talk about our financial situation. We are having a tough month. We overspent and got ourselves into a pickle and then the truck broke down. We know that this struggle is something WE created but that makes it no less painful.

After saying what he said above he laughed and said "You know if a rich person heard me say that we're alright because we have paper towels, they'd think I was nuts."

It got me thinking. What little things are important to different people. For John it's paper towels. We never used to be able to afford this little extra and the fact that we always have them now keeps him feeling like we are doing ok.

Usually I'm more wrapped up in the whole picture. I never thought about paper towels in this way before. He's right though, we never used to have paper towels except on rare occasions. I'd buy them for major cleaning days or as a special thing. Now we always have paper towels and I never really think twice about it.

After today I'll not see them in the same way again. Now I'll look up and see that roll of wonderful white hanging proudly in my kitchen and think "ah, there they are, and we're doing just fine".

So the next time things go sideways on you, stop and think. What little thing do you still have that lets you know you are still ok? Or what little thing do you need to help you feel like things are going to be ok?

For now, "we're doing just fine because we have paper towels".

They Call Me Naive

They call me naive.

Because I work hard,

Even when the pay is small,

But I think that's integrity.

I'll Never Be

She sat staring out the window of her little one bedroom apartment, watching the happy people in the park across the street. She smiled as she watched a couple, holding hands, walking down the sidewalk, laughing. The smile dissipated and her face turned somber as a voice in her mind said “I’ll never be that happy”.

Somberly she arose to go make some tea. On her way past the television she, by force of habit, switched it on, not bothering to look at the channel. Again, she smiled thinking the background noise would drown out that whisper that was rising in her mind to torture her.