How to be a Successful Professional Patient

If you’re like me, a “professional patient,” you spend a lot of time going to the doctor’s office and you might even frequently see new doctors. These are my tips, all learned the hard way, from experience.
How to be a Successful Professional Patient: Tips for a good doctor's visit for the chronically ill #chronicillness


I always dread upcoming appointments because that means being weighed, measured, updating symptoms, updating medications, and so much talking that it can be exhausting. Especially if your doctor only has a few minutes to talk (or gives you 45 seconds to talk, max), you need to make the most of the time you have there without hurting or stressing yourself out.

What’s even worse for me, personally, is seeing a brand new doctor. I can’t get my entire medical history out during one of those “long” appointments that they give you at the beginning. However, most doctors find my medical history fascinating, in a “wow, I’ve never met anyone as messed up as you,” or “I could definitely write a paper about you,” (true story), kind of way, so they run long. That’s not good for me because, like I’ll discuss below, if I haven’t prepared properly, I end up leaving frustrated, misunderstood, and without the help I need.

For Regular Check Ups

  • Budget time to prepare for your appointment. Make a super comprehensive list of things that have to be done before you walk out of the door, even if it is a mental list, plus how much time it’ll take. Then add 10 minutes or more to that. Set alarms as needed. Also, make sure you have gas! Running late because you had to stop for gas is not fun.
    I always need to let the dogs out, find my keys, brush my teeth, grab paperwork, etc. Then I remember things like, “oh, the dogs need more food!” If I budget my time before the appointment, I’m not adding any extra stress to the appointment.
  • Always keep a current list of medications printed out.
    This has helped me out in more ways than one. Once, during a kitchen accident, I knew that I was going to need to get stitches. Since the cut was on my right hand, I knew that I wouldn’t be filling much paperwork out, plus I was in pain and had already popped some pain pills. My husband drove me, but for me to list out all of my medications (including spellings) and doses for him, would have been nearly impossible.
    Now, it’s so much easier to hand the nurse a list that he or she can keep.
  • The list includes:

Medication name
Dose/or if used as needed
Purpose of medication
Prescribing doctor
Doctor’s phone number
Doctor’s specialty–I recently added this because some doctors get confused about which doctor is my neurologist, pain specialist, etc.

  • I keep this list on my Google Drive, so if I have an emergency or don’t have a print out, I can pull it up on my phone.
  • I also keep a list of recently discontinued medications and why (a doctor changed the medicine, bad side effects, ineffective, allergic reaction). This lets the doctor know that you can’t take Topomax, even though this doctor might ask you if you’ve tried it before, three times during a single appointment. “Yes, I already said that you prescribed it last summer, but I got confused and cried at work, so you had me discontinue it…”
  • Have a goal. Unless you are newly sick or have very strange new symptoms, have a goal for the appointment. Do you want to let the doctor know about side effects of a medicine? Do you need the doctor to fill out a form? Do you have a question about a new type of therapy–trying physical therapy, biofeedback, or something that the doctor hasn’t discussed yet? Do you need a refill? Know your objective before you walk in the door.
  • Write out talking points. Since you may not get to say everything that you want to say, have your list ready. Have your most important point at the top. Make sure to touch on that goal very first thing. Then, any other questions that you have or symptoms that you want to mention, make sure you have it written down.

+Sometimes I get intimidated, flustered, or just fatigued at an appointment. This list makes sure that I don’t forget to ask if I need to take a certain supplement every day, or if I could lower it because it is hurting my stomach.
+My notes also include a short narrative about my health since my last visit. Even though my pain doctor isn’t giving me botox for my dystonia, like my neurologist does, it is good to let her know if I’ve recently had shots, if my neck has been stuck to the right, or if I’ve had bad headaches. I keep all of the doctors “in the loop,” since they don’t ever talk to each other. Don’t get me started…

New Doctor Appointment:

I hate these. Seriously. They’re so painful. I always go in with a lot of hope, but come out with no hope. A lot of doctors seem to over promise, but when I get there, they realize that I’m complex. Then, I’ve just exhausted myself by going over my history, even if I have had records sent over. I have had so many one-time-only visits that leave me bedridden for a few days when I am recovering from it because I didn’t follow my own tips.

  • Arrive early. It can be hard to find the building and parking, especially if you are very familiar with the area. If it is in any type of medical complex, it can be hard to find where to park and the best place to access the entrance, plus then you have to get to the office. Most places want you there early to fill out additional paperwork, too. You can avoid extra stress by leaving yourself time to find the office.
  • Make a timeline. Visuals are helpful, but just a list with bullets, by year, can make the appointment go more quickly. The doctor can look it over and ask clarifying questions, instead of you having to reach back into the far parts of your memory.
  • Bring your medication lists and any recent bloodwork or test results that you have. This will prevent the doctor from needing to rerun any tests, especially if your insurance may not cover the test because you just had it done. Also, it gives the doctor a better picture of your health.

I am not perfect at doing all of this all of the time. They are tips that I’ve learned the hard way–through error. So, I hope that my mistakes help you have better doctor appointments, especially if you feel like you live in waiting rooms.

Do you have any tips for me? How do you deal with a ton of appointments? I’m SO open to suggestions!

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Categories: Chronic Illness Tags: ,
Why I Publish Non-Dystonia Posts

So, I’ve been reflecting on why I blog. When I started blogging, I wrote a lot of reflective essays. My goal for my blog was to raise awareness for all types of dystonia, but specifically to connect with Cervical Dystonia patients. I had no idea where it was going to take me. A year ago, I never thought that it would look like it does now.

Eventually, though, I changed how and what I wrote, so that more people would read my blog. I was willing to do that because I really wanted to raise awareness for dystonia. I didn’t write paragraphs upon paragraphs anymore. I would take an essay and break it into a list. Instead of a thesis addressed by paragraphs of writing, I would “defend my thesis,” so to speak, with easy to follow bullets. I started to understand how visual people are, so I had to break things down into a few sentences at a time, which ruined my favorite part of writing – my own, unique voice and point of view.

Why I write a full lifestyle blog, instead of a singly focused Dystonia blog.

In fact, this post originally had a different title and went well over 1,000 words. So, I decided to split it into two posts and provide you with these handy bullet points. [If I could have made this a DIY post, I would have 🙂 .]

Why I Still Publish Non-Dystonia Posts:

  • There are other blogs about dystonia, but there aren’t many, especially those offering any tips that are derived from personal experience. Yet, I belong to a private Facebook group with over 2000 members who all have cervival dystonia, which is only one type of dystonia. I knew there was a void of personal experiences, and I could fill it by writing what I wanted to read when I first got diagnosed. So, I made concessions in my writing style to bring in more traffic. Traffic means that my site will be seen and noticed. In fact, I’ve had posts get picked up by Healthcare Advocacy organizations.
  • If you saw my Instagram post from Monday, you can see why I am going to continue to blog and put out the content that people want to read, in addition to the content related to dystonia. More people than just people with dystonia are suffering, so I at least want to offer a common experience, a listening ear, and maybe connect with them about some other interest because it’s miserable to think about your pain all of the time.
  • Blogging is fun because I’ve learned about photography! I am learning to play around with graphic design, which is something that I never thought that I would touch. I have always liked to paint and write, but I never thought of myself as creative until now.
  • I’ve read more blogs and learned more about different lives and viewpoints than I would have by living in my own bubble, here in South Carolina. It’s also amazing how much we all have in common, too. The human experience is amazing.
  • Blogging has made me more creative. I have more discussions. Real life conversations become blog posts.
  • Blog friends. You know who you are.

More to follow!

contact me dystonia

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Categories: blogging, Cervical Dystonia, life thoughts Tags: , , ,
Cervical Dystonia and Depression: Lessons From Search Terms

*I am not a doctor. This post is based on personal experience.*

Cervical Dystonia and Depression: It's Ok to Get Help

Since I started blogging, I have consistently written about my personal experiences with Cervical Dystonia. As I’ve accumulated more information on my site, I’ve noticed a huge increase in search term hits. I am happy that my blog has allowed me to connect with so many Cervical Dystonia patients because we have been able to share our tips on dealing with the physical and emotional pain caused by Cervical Dystonia. Also, I’ve been able to encourage newly diagnosed patients and share helpful resources with them.

Some of the most common search terms (that I can see) are:
cervical dystonia
cervical dystonia dry needling
why does ice help cervical dystonia
ways to ease pain from cervical dystonia

However, I am writing this post because this morning, I noticed the search term (twice):
if you have cervical dystonia if you want to fall down some stairs would it break your neck

If you searched that term, please contact your healthcare provider or call 911 immediately.

For anyone else who is searching dystonia and feels despair, tell someone. It’s ok to talk about it and get professional help. The diagnosis can be a relief, if you’ve been searching for answers, but it can understandably cause depression. You have a painful condition that is coming in and WRECKING your life. I can’t say that it will ever be the same again, but it can still be a good life.

I’ve been there. I’ve not wanted to live with the pain from dystonia anymore. It does feel like the pain won’t end. Sometimes it take a long time to get your Botox injections scheduled, placed in the right spots, and at the appropriate dosage. It takes time to figure out what other therapies will work for you, like ice, heat, massage, or another oral and topical medications.

Pain management is an art, not a science. Every person needs to work with a doctor to try their own plan. There are tons of resources on the internet about ideas of things to try, but everyone reacts differently to medicines and complimentary therapies. It will take time, but pain can be managed over time. There is no quick-fix, but I encourage everyone to explore all of their options with an experienced doctor. I have a pain management specialist who will refer me to other practitioners (like physical therapy), if that’s what I need, but she oversees all of it. She’s the one who will prescribe lidocaine patches, if I want to try those because I don’t want to take anymore pills, when the pills drain the life out of me.

If your pain is not being managed well, you may need a new doctor. Maybe you’ve been in pain for years and years, but you only get pain killers and you’ve hit the limit of what you can take. That happens! The pain killers could only be masking the fact that your are not properly diagnosed and receiving adequate care for your dystonia in the first place.

While you are waiting on the pain to be managed, you can go through a ton of emotional turmoil. In fact, even after you’ve “managed” your pain, to use the term loosely, you can still have anger, frustration, and depression that stems from all of the pain you endured. Cervical Dystonia can touch every part of your life. So, please, know that you are not alone, it can get better, and it takes time.

Additional Information: Here is a great article that I found that explains the connection between depression and pain!

Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.

contact me dystonia

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Categories: Cervical Dystonia Tags: , ,
But You Don’t Look Sick: An Open Letter

[Note: This post was updated on 1/12/2015, upon further reflection of the subject.]

So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

but you don't look sick open letter

Hi there,

You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase “you don’t look sick.” You know what, you’ve never seen me at home alone. So, yeah, I don’t look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn’t help my pain. I’m sorry if that conflicts with your idea of looking sick.

I don’t mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don’t look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn’t even mention the other conditions with which I live), please don’t think you’re complimenting me. If you follow it up with “but you’re so beautiful,” you are unknowingly implying that being sick should make me ugly. Maybe you think I’m exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won’t.

This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days.

I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn’t entirely from the “active wear” department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don’t see me at home. You don’t see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have.

I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick.

If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don’t look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn’t help you hold your head straight, but I experience life altering pain, just like you.

I also want to take a minute to address a few more problems with the phrase you don’t look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can’t even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don’t tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I’ve had run, and all the extra things that I require to maintain a manageable pain level. I’ll never tell you how many doctor visits that I average a week or how many pills that I’ve tried and had horrible side effects or allergic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with you — yes, I have been turned away by primary care doctors because I’m too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn’t understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade.

When I hold my head straight really quickly, so someone can take a picture, because I’m wearing makeup and plucked my eyebrows for the first time in two months, don’t think that’s my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents’ house.

So, I if you’re a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.



Related Posts:
Rethinking Hospitality (for the Chronically Ill)
Cervical Dystonia
Managing Cervical Dystonia Pain
Invisible Illness

Categories: Cervical Dystonia, EDS, Sick Tags: , , ,