To the First Doctor Who Invalidated My Pain

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I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first-year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don’t know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all my blood work had come back normal, with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, some doctors can be apt to judge one’s pain as psychosomatic. But I didn’t know that then. I just thought doctors were supposed to help.

You didn’t listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body, asking if they were tender and said you felt I probably had fibromyalgia. You didn’t hear that I was not in muscle pain and that none of the “tender points” felt tender. I can’t say what you saw when you looked at me, but it certainly felt like you didn’t see me. I don’t think you saw the otherwise extremely healthy 20-year-old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running and playing soccer. I can’t say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I’m a fighter with a researcher’s heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew fibromyalgia wasn’t it. And I knew you weren’t really listening to me. 

But now, seven years later, I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help, I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn’t fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not OK. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. I have ankylosing spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30 to 40 percent of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

Follow this journey on Anchor for the Soul.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

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When a Nurse Rescued Me After I Almost Gave Up on Life With Autoimmune Disease

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I remember precisely the moment I gave up. As if the enormous weight became too heavy to bear.

I had begun to have the strangest pain in some of my joints. And fevers. And infection after infection… with no answers. I was a stay-at-home mom of four children (the hardest job I’ve ever had). I could do it all, at one time in life. I went from doctor to doctor and they ran test after test, with no answers. There were ugly comments,  judgments and so much hurt during that time. Still, no answer.

Until I got one.

Ankylosing spondylitis (AS). I’d never heard of it. Maybe you haven’t, either. It is an autoimmune disease that affects the spine, joints, and in some cases, organs. I read all I could about the disease. And I knew I could not do it. I wasn’t strong enough. I could not do it to my children. My husband. I chose to attempt to take my own life. I failed at it.

I spent some time at a mental inpatient program and met a nurse who took time to sit with me and talk about it. He said, “Guess what? This sucks. Life is hard. Look at what you can do if you stick around and continue to fight for those who can’t do it on their own. Your children. The animals that depend on you. Your influence is needed. It’s going to suck. You’re going to be miserable. But, you can do this. Make a change.”

a woman lying on a pillow with a dog next to her
Angila and her dog.

After years of rescuing and advocacy, someone rescued me. Advocated for me. I decided to fight that day. I decided to be brave. Not because life would get better for me. But because it would get worse, and I needed to be OK to fight — to fight for myself, to fight for those with no voice.

I will never run again, as there is no cure for AS, and I’m not a candidate for treatment, due to high infection risk and my immune system. But I’ll be here. I choose to be. I choose to fight. And I choose to be brave. I was rescued that day, so that I can set an example, and continue to help others.

So tomorrow, I’ll fight more. And I’ll wear blue to support the other AS warriors. I’ll find beauty in life, and in myself.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

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What I Really Mean When I Say 'I'm Fine' as Someone With Chronic Illness

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Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing. Moreover, the effects of illness are an emotional and personal daily battle.

Many people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realize that even when we say we are fine, we really are not. At times when I say I am OK, I really wish I could share with people who don’t understand my ordeal and how chronic illness and pain truly affect my life.

Every now and then, when I say I am OK or I am fine, I really mean to say:

“I hurt more than I can effectively express.” The physical part is often easier than the emotional part. I have people in my life who don’t believe the extent of my sickness and pain, so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people I once called friends and loved ones who have walked away because I believe my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help in therapy and I look for solace in prayer and in the things and the people that I love. These things have allowed me to a stronger person — both in conviction and in the ability to see past my limitations. So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

“I am scared.” I have read up on about rheumatoid arthritis (RA) and fibromyalgia. I know there is no cure for either and I don’t see remission in my future. I also know I will never return to perfect health. I worry about what the future holds and where I will be in 10 years or 20 years. I am only 40 so I have a long life with RA and fibromyalgia. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions, but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in and of itself. I will never be my former self, but I am working on maintaining some level of peace when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

“Life is just not fair.” I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful, and I am. Chronic illness has taken a lot from me, but I have taken a lot back.

No one said life was fair but it is worth living. While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

“It is not my fault.” Being sick is not my fault, but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine, but sometimes I feel guilty they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t. As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed, and sometimes it makes me second-guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong — my getting sick — that wasn’t my fault and the bad things that happened after weren’t my fault, either. All the good things were due to my hard work. Nonetheless, if I could have protected my health, I would have done everything in my power to make sure I stayed healthy, but I couldn’t. Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not always being fair. So, I didn’t mean to get sick — I really didn’t — that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say. Yet, it is not always easy to say them.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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 Submit a Story page for more about our submission guidelines.

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To the Person Just Diagnosed With Ulcerative Colitis

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So, you were just diagnosed with ulcerative colitis? Hey, I know what you’re feeling. I’ve been where you are right now. You might be young, maybe in your teens. You might be older, with children and grandchildren. Maybe it’s your child who’s been diagnosed with UC. Regardless of where you’re at we’ve all been there, all of us with UC, and it’s OK to be scared, shocked, indifferent or whatever you’re feeling right now. It’s all valid.

I would like to tell you a bit about my story from where I started my UC journey to where I am today because I want to share with you how it’s possible to have an amazing life with this chronic illness.

I was diagnosed when in December of 2008 when I was 15 years old. When I got diagnosed I felt, well, nothing, really. I felt kind of indifferent. I had gone to my school nurse with pain in my lower left side and I got an emergency appointment with the doctor since they suspected it might be the appendix. When that was quickly ruled out, the doctor kept asking me questions.

One question required an answer I had never spoken out loud before.

“When you go to the bathroom, is there blood when you poop?”

I answered yes.

Then, he asked, “How often?”

“Every single time.”

Then, he asked, “For how long?”

“For about 10 months.”

I still remember his reaction before he managed to get his face under control: his eyes widened in shock.

I was sent to the hospital in a bigger city nearby; my mom drove me there. They did some tests, and my mom and I stayed the night. Results from the blood tests showed my red blood cell count was about half of what you’re supposed to have, and the nurses were amazed I was even standing. They said they had never seen anyone walk around with such a low blood cell count. At this point, I was going to the bathroom 20+ times a day. At one point in time I had pooped my pants and washed myself off in a middle school bathroom, then took a 25-minute bus trip home.

I know it sounds amazing that I wasn’t understanding something was very, very off, but I really didn’t. It had all become so normal at this point.

I was diagnosed within a few days of first going to the doctor, got some basic information about the illness and was then sent home with a doctor’s appointment scheduled a few days later. I was still indifferent. I remember saying to my mom, “Hey, so what if I need to take a few pills a day if that means I stay well for the rest of my life?” My mom took it way harder than I did.

A few days after that, I completely crashed and ended up spending three weeks in a hospital bed not being able to eat or drink. I was in constant excruciating pain, and I was too weak to properly walk the maybe 10 steps needed to get from my bed to the bathroom. I got out of the hospital the day before Christmas, and the coming months were a long, hard struggle to get, literally, back on my feet. I couldn’t stand up while showering because it was too exhausting. My mood swings were horrible because of the high doses of cortisone I was taking: I once had a meltdown because my mom asked me what kind of juice I’d prefer. If you’ve been there, you know what it’s like. It was hard. It took me another eight months to fully recover from my three-week hospital stay.

The seven years since then have been filled with ups and downs. I’ve tried different medicines, been away from school for months at a time, been screaming from pain. I’ve matured in ways you only do if you’re combating a chronic illness.

I am a hopeless optimist. I honestly believe things will turn out well in the end. Ulcerative colitis is a part of me, and I’m doing the best I can. I can honestly tell you that living a meaningful life is possible. Right now, I have a full-time job in broadband customer support. I play roller derby, a full contact sport on roller skates. I am active in different volunteer organizations. I play video games, I’m in a book club and I am writing a science fiction novel in my spare time. I go to events and pop culture conventions and music festivals. I have friends I can talk to and who appreciate me for who I am, regardless of me having UC.

I do this even with my recent switch to the medicine Humira, a bi-weekly shot that, even with numbing salve, makes me scream in pain when I take it. (And I have a high pain threshold) I do this even with the possibility of having to get a stoma in the near future. I do this despite doses of cortisone, despite eczema, despite normal colds knocking me out completely because of my lowered immune system. You can also do this.

But you know what? It’s OK even if you don’t do all of this, or half of this, or even any of this. If you got out of bed today: congratulations! You’ve done great today. If you didn’t make it out of bed today, that is also fine. You’re doing great for hanging in there, and tomorrow is another day.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. 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 Submit a Story page for more about our submission guidelines.

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When Multiple Sclerosis Relapses Make Me Dread My Bed

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I hate my bed. I realize I shouldn’t, but it became more than a bed during my multiple sclerosis (MS) relapse last summer. It felt like a ball and chain attached to me all day and all night. I could not escape that dreaded bed.

I found myself becoming bitter towards anything to do with a bed. I remember scrolling through Facebook and coming across a meme that said something about waiting all day just to get home and back in bed. It was meant to be funny, but it made me feel snarky and mean.

“Yeah, OK. Try having the choice of being out of bed taken away from you, and we will see how glorious that bed is then.”

My mind started to fill with poisonous thoughts. I felt that little rain cloud forming over my head.

And I knew it was time for a change.

That bed was not evil. If anything, it was trying its very best to help me rest and recover, to comfort me, to bring relief. So why was I so angry at an inanimate object? Then it hit me.

I was mad at my MS.

The poor bed had just become a scapegoat. What was really angering me was the relapse and lack of options to get out of it. Waiting was all I had left to do. And I am extremely impatient. Just ask my sweet husband.

I started to think about what I could do to make the best of the situation. At first, it was little changes such as a move to the couch or recliner, looking for a new book to dive into, or journaling. Within a week, I no longer wanted to violently lash out at Facebook memes.

With MS, like many chronic illnesses, you may not always be able to make something disappear with medicine — you simply have to wait. But that doesn’t mean you have to wait miserably. When I think of all of the times I have said to myself, “If only I had time to…” I realize I have been slowly making a list of things to accomplish when MS strikes.

Read a book, cross-stitch, write, create, learn. Those are my favorites now.

MS may think it is stopping my life dead in its tracks when I relapse, but I decided it is just a mandatory vacation from the busy lifestyle we live. And I’m not letting any vacation go to waste.

Liz sitting in a chair, reading a book
Liz reading a book while on a “mandatory vacation.”

Follow this journey on Brain Brake.

The Mighty is asking the following: Describe a meme, image or sign you’ve seen shared online that struck a chord with you, for good or for bad. 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 Submit a Story page for more about our submission guidelines.

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What Keeps Me Running on Difficult Days With Crohn's Disease

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Natalie, ready for a run, wearing headphones and giving the thumbs up
Natalie on a run.

As the weather warms up, the desire to exercise outdoors is
so inviting. Like many brides-to-be I have a little extra motivation to lace up my shoes and a little extra jump in my step as my June 4 wedding day quickly approaches. While I’ve always considered myself a somewhat active person, working out and running have taken on a whole new meaning since last summer — when I spent two months of my life riddled with pain on the couch, doing all I could to heal from debilitating Crohn’s flare-ups and the eventual removal of 18 inches of my intestine. I spent much of the summer of 2015 on the sidelines — both professionally and personally, watching as the rest of the world went on with their days.

Fast-forward eight months — and now, time and time again when
I’m out running I have flashbacks that push me to be strong. I think back to the monotonous days of watching full seasons on Bravo with my mom and her pushing me to walk eight laps around the family room post-surgery. I would grimace in pain and whine about how hard it was to put my right foot down compared to my left — walking more like Frankenstein in my pajama dresses than a 31-year-old woman. Then, when I graduated from laps around the house, my fiancé and I tried a walk outside. We made it maybe 75 steps, 100 pushing it. And I had to stop. I knew the road ahead to feeling 100 percent was going to be a long one, whatever feeling 100 percent actually feels like. To this day, each and every time I pass that spot on my runs it takes me back to that moment that felt like defeat.

Prior to surgery the doctor let me out of the hospital for 10 days so that I could get my energy back and be strong for surgery. Each morning in July I would walk one hour and mentally prepare myself for what was about to go down. The walks were easy; I always felt a sense of accomplishment when they were done. So, when I tried to walk that same route a week after surgery and made it about three minutes, you can imagine how discouraging it was.

As the days passed, I continued to get stronger. My mom knew she had to go back to Chicago and I would need to be on my own while my fiancé was at work. So she gradually tried to wean me off needing her to get me water from the fridge, needing her to tie my shoes and dry my hair while I sat at the kitchen table. I’ll never forget the day we went for a walk together and I was able to make it around the block. Putting on my own shoes and tying them so that I could walk a little farther felt like the greatest accomplishment of my summer.

Now, every time I take a walk or run around my neighborhood and I want to slow down or stop, I think back to how fragile and weak I was. It feels like a shot of adrenaline that runs through my veins and pushes me to keep going. The flashbacks of battling Crohn’s for nearly 11 years, while painful, also inspire me. The difficult days guide me to be strong and grateful. The flashbacks of how bad it can get make the “feel good” days all the more glorious.

It’s so easy to take feeling well for granted. For those of us who’ve been dealt a different hand of cards, it’s important to remember there are countless opportunities to be positive and healthy.

The other day when I got home from work, when I felt a gnawing pain in my stomach and walking became difficult, I contemplated just going for a run the next day and spending the night on the couch. But, once again — I stopped to reflect on the situation and was determined not to let this disease keep me on the sidelines another day. I started the run in pain and finished it pain-free and proud of my accomplishment.

Lace up those shoes, focus on the now and use past and current struggles as a source of strength — even if it feels like you’re only taking baby steps. Whether it’s for yourself or for someone else, run with reason and you too might feel that shot of adrenaline.

a woman and man in running gear
Natalie and her fiancé.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

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 Submit a Story page for more about our submission guidelines.

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