How to Quickly Alienate Someone With Chronic Illnesses

how-to-quickly-alienate-someone-with-chronic-illnesses

Sadly, this is based on a true experience.

  1. Send a vague email that sort of sounds like you want get to know the Chronically Ill Person (CIP), who will get excited because no one ever wants to do that. But the vague nature almost sounds like a threat, so they will want to back out because everything has strings attached when you’re sick.
  2. Don’t take into account that meeting for coffee will require days of anxiety and preparation on the CIP’s part. They may have trouble bathing, grooming, ironing clothes, or getting dressed. So, even if you pick a time that sounds reasonable, it could take them hours to get ready, plus they may need someone to skip work to help them dress and put on shoes.
  3. Show up late. Don’t respect the CIP’s time. They respected your time and did everything humanly possible to make it, but you show up half an hour late, while only texting that you will be late 5 minutes before the meeting time.
  4. Make all of their worst nightmares come true. They opened up to you about being sick, which you will not understand. Trust me here. You cannot fathom what it’s like, despite how much the CIP describes it to you. Getting ready when you are sick is NOT like dressing your kid and putting them in the car. It’s much more painful because you are a full grown adult with shooting pains, who has lost the ability to lift one arm above your head.
  5. It doesn’t matter how much you say “this is coming from a place of love,” handing out advice, that is declined, is declined. Pushing it won’t change it. The CIP has been dealing with a team of professionals for years. So, offering counseling 45 minutes away when getting coffee 10 minutes away was an ordeal isn’t going to change from a no to a yes. When the CIP then makes it VERY clear that they have nothing against counseling because they have been 6 to 8 times, including all summer, along with the fact that the CIP is more well versed in the types of counseling, when you wouldn’t know the difference between CBT and DBT if it hit you in the fucking head, it’s time to shut up.
  6. Assume EVERYTHING. Make up lots of phrases like “I assume that you feel this way about x, so I assume you feel this way about y. How is that for you?” But… the CIP doesn’t feel that way about either thing! Put the CIP on the defensive the entire time.
  7. Act like the CIP is the annoying and needy friend that no one wants in a one-sided friendship. Especially, if the CIP doesn’t have your phone number, has never interacted with you in a one-on-one setting, and you’ve only known each other for a few months. Start that friendship off right. It never hurts to lay down ground rules like, “I can’t be all of your friends,” or “I’m not a trained professional.” (Just so you put the CIP in their place and remind them how awesome you are to be taking your time to be with them and that they might be a little bit crazy.)
  8. Assume that the CIP actually wants your friendship. Maybe the CIP just wanted to show up once a week and participate. Don’t forget to repeatedly point out how lonely she is and how that’s her only outlet during the week to get out. Pointing out her loneliness and making her admit that she has no friends is a nice touch.
  9. Repeat that you don’t mean to attack them often. It’s like saying “no offense, but…” It gets the job done. But meaner. It reminds the CIP person that you never wanted to get to know them or understand what they were going through. You lured them to get coffee with an ambush set up. You don’t understand in the slightest how it feels to be sick or even what it looks like to be this sick. You have one objective AND YOU WILL ACCOMPLISH IT because you hatched the plan that the CIP needed to see a counselor without knowing anything about them.
  10. Definitely end the conversation with a critique of the person. Something that could be addressed as a reminder to a whole group, but instead pick out the one new member and critique the CIP to her face. It’s a nice memory to leave with.

    These ten simple steps will assure that the Chronically Ill Person will never show up at your community group again. The steps will assure that the person will stop attending church. The steps will assure that the person never opens up to another person again. The chronically ill person will no longer confide in her spouse, parents, doctors, or seek counseling because someone could just turn it around and throw it in her face.

So, if you hate someone, do this. If you want to love someone, DON’T EVEN TRY IT. How anyone thought that would work out well is beyond me. However, I hope that one day I can tell the girls who did that to me what kind of damage they have likely permanently inflicted because they wanted to be right more than they wanted to listen.

If you are sick/have a sick family member, what would you like to see change, with the way you or they are treated?

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Pros and Cons of Social Media for Chronically Ill


Pros and Cons of Social Media for Chronically Ill >>> Tips on Combating the Cons
Last week, I wrote about the social media break that I took. There are parts of social media that are a little different for me because I blog, which is not done in a vacuum. Blogging, at least these days, requires the use of social media to promote and interact. However, when I was reflecting on my use of social media, I thought about the implications of it for the chronically ill.

This post is about how social media and the internet can be used for people who are chronically ill or homebound. Until I had a family member take me to a national conference, I never met another person with my relatively rare neurological condition, yet I can connect with them on the internet to ask questions about managing symptoms or coping any time that I want. Doctors shuffle me in and out of a 15 minute appointment and then outsource me to “specialists” for other symptoms, but these specialists don’t know squat about dystonia. I’m the one who has to educate them on my limitations and pain.

Basically, the internet, specifically social media, because most people with chronic illnesses don’t have blogs.

Pros

  • There are people who live tweet their medication usage to bring awareness to their conditions.
  • There are people who write insightful posts about what it’s like to be harassed for using their handicapped placard, even though they don’t have a wheelchair. Actually, the list of how blogs can be used to raise awareness is astounding.
  • Facebook/Twitter campaigns can be used to raise funds and awareness.
  • There are people who join private Facebook groups to find support, understanding, and answers to their questions.
  • No matter if it is Twitter, the comment section of a blog, Instagram, Facebook, email, or something else that I’m leaving out, there are ways to connect with other patients.

However, there are downsides to using social media when you are chronically ill. There are downsides, like when you are housebound and you are getting on Facebook to check on your support group, but see pictures of your peers living the life you thought you would have. That’s why I wrote this post. There are some solutions!

Cons

  • When someone is isolated, it can feel like the only way to stay connected to the world is through social media.
  • I will admit, being tethered to phones, tablets, and laptops is exhausting.
  • Social media friends are great, yet, they are not substitutes for real friends. The level of comfort you feel from behind the screen can keep you isolated, if you mentally struggle with getting out and making friends.
  • Envy. It’s easy to see pictures everywhere of the fabulous lives of non-ill people. Envy can eat you up.
  • Seeing peers living the life you thought you would have before chronic illness hit can hurt. Even if you’re normally fine, everyone has a bad day.

Solutions!

  • Not everything requires an immediate response. Take time for yourself.
  • Categorize/Organize your email for newsletters to read later, emails to respond to when you are well, and delete what is not relevant.
  • We all can agree that people only post what they want people to see. They aren’t posting pictures of themselves crying and sad, just like you don’t either.
    >>>However, if that is still hard to remember, it’s easy to create a Facebook page that you use only for joining private support groups and liking/following advocacy groups that inspire you.
    >>>Also, there is a new app for your phone that allows you to JUST go to your Facebook groups. I you turn the notifications on or off.
  • Clear out your blog feed. If looking at fabulous fashion blogs makes you long for the days that you used to wear high heels and blazers to your corporate job, and then go out for drinks (day to night outfits, anyone?) take them out of your feed. Only scroll through blogs that inspire you to live a more fulfilling life. If someone writes consistently depressing content, take that out, too. Just read blogs that make you feel good about yourself.
  • Instagram: You can delete it. However, I love it. It’s one of my favorites! I have a personal account where I follow my real life friends (or I should say people that were my friends at one point in my life), but I don’t even log in anymore. I have a blog account where I only follow people who inspire me. I don’t follow fashion bloggers. I follow the bloggers that I read. I follow fellow chronically ill people who post funny pictures poking fun at themselves or who are raising awareness for their condition. I find that they are like-minded and inspiring.
  • Twitter: If you scroll through your feed and someone is non-stop tweeting about their vacations or anything that you don’t like, you don’t have to follow them. You can also mute them, if you don’t want to unfollow for some reason.

 

Pro-Tip: Turn off notifications on your phone! No sounds. No pop ups. Move those icons to the back. You decide when and where you’ll check. You decided when and where you’ll respond. Being chronically ill can make you feel utterly powerless, but you can exercise a little control here! Take it!

In Summary:

Social media can be used to connect and interact with other patients. It can be used to learn and raise awareness. You have control over what you do and don’t see.

 

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Oh, Hey. I’m a Person. I Need Goals.


Chronic Illness can rob you of all of your goals. This is how I'm slowly rebuilding mine.

Goals After Chronic Illness

I know a lot of people post their goals at the beginning of the month, but I do things on my own time table. It’s part of accepting my limitations with chronic illness. For years, I thought because I couldn’t “get things done on time,” there was no point in trying to set goals for my life. I had to leave my dream job, drop out of grad school, move to a strange city, and gradually lose more and more ability to care for myself. I’ve always been goal-oriented, so losing the ability to reach even self-imposed goals has been heartbreaking.

Honestly, I never quite saw the point of posting monthly goals, other than accountability. I thought, hey, I could just write these down in private. No one would know that I can’t reach them...

Then I thought, oh, wait. I’m a person, too. Just like I need hobbies. I need goals.

Current Attitude:

Recently, though, I started thinking about my own goal-oriented-ness. I know that I can’t do everything that I want to do at once, so I made a list of HUGE, broad goals. Ones that could take years and years to accomplish. I wrote down the ways that I would measure if I accomplished them, so writing them down was helpful. I will probably start being one of those monthly goal people, but mine’s a running list! I promise that future posts will be shorter and more concise.

Now, I am keeping that really long running list of small goals for along the way. Much like the way that a runner who wants to run a marathon sets small goals along the way, I think of new things that will eventually get me to where I want to go. As I make tiny bits of progress, I add a new daily/weekly/monthly goal. I just have to accept that I won’t achieve everything all of the time, but there is something powerful about writing it down and at least thinking about taking control over my life, since I don’t always have control over my body. I have the kind of goals that take some energy, but some that can still be accomplished as long as I’m not totally screaming in pain.

I really enjoyed reading people’s goals this month for some reason. Maybe it is because I have a little bit more motivation than I had in the past? Because I’m writing my own goals down in my binder? I even got some good ideas for goals! It was fun to celebrate with my favorite bloggers when they accomplished their goals or even to offer a bit advice or encouragement. Because, honestly, I always skimmed through blogs on the first day of the month (too many goal posts). Maybe now that I have goals again, I won’t feel an unconscious resentment.

Some of my goals are meaningless unless you understand my physical conditions, but I thought that I would share a few things that I’m going to try to work towards during the next few months.

I’m not naive enough to think that I can accomplish anything in a single month. Most of these are long-term. Some are like “do this once a month,” or things like that might just get done once. Others are super obvious goals that other people do without thinking twice, but once I got sick, I stopped doing them.

Aside from creating a little accountability, I hope maybe my tiny goals will inspire other people who have felt like they can’t accomplish goals anymore.

 

A few timely posts from a blog that I love came to my attention after I started working on my own goals. Life in Slow Motion talks about reframing your setbacks and how to symptoms to prevent flares. Personally, I use a mix of apps and paper to track.

Starting at Home

  • Purposeful reading
    > Read a memoir each month
    > Read a literary theory book each month
    > Read a book towards a reading challenge each month
    > Read a book about writing (this may take longer than a month)
    > Read at least part of an anthology of anything
  • Organization
    > Keep my goal list running and add as possible
    > Organize emails for immediate response, respond as soon as possible, and answer when my health allows me to write the best response
    > Track my goals and schedule, as my health allows! (I found some printables on Pinterest that work well for me)
  • Blogging
    > Since blogging is one of my few current hobbies, I set a few goals for it.
    > Keep a running list of ideas.
    > Try to write when I feel well, so I will have a surplus of posts to publish when I don’t feel well.
  • Life
    > Plan one activity with Brian per weekend where we put away all technology at the house or leave the house, if possible.
    > Treat myself to a favorite TV show or two every few days.
    > Keep a “get ready/go to bed” list taped to the bathroom mirror.
    >>>That’s how bad things can get when you’re sick. You need a list to remind you how to take care of yourself.

I’m working on all of these things slowly, but surely.

How do you set your goals? How do you set goals, especially after a prolonged illness?

 

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Categories: Chronic Illness, Goals Tags: ,
When You Are Feeling Embarrassed of Yourself


When You Are Feeling Embarrassed of YourselfWhen Feel Embarrassed of Yourself:

I have had Tourette’s Syndrome since my earliest memories. It used to be really bad and painful. I could hold it in at school, but the greedy monster of needing to have a tic would come crawling out of shadows when I got home. The more I tried to satisfy the urge, the more the repetitive motion hurt me; then, the more I had to do it.

Age and wisdom has taught me my triggers. I have small, yet painful tics. I sat in the office of a neurologist at the Mayo Clinic, giving my history, while having tics, yet the doctor said he never observed any. That’s how well I hide them, but they are still quite painful.

However, extreme stress brings the tics out in the most vicious way. The tics present in a way that is entirely new and different.

If you follow me on Twitter or Instagram, you know that spent awhile at the Mayo Clinic. Talk about stressful. Packing. Traveling. Sleep deprivation. Uncertainty about appointments. Doctors who didn’t listen. After a day of travel and the first two days of appointments, I broke down. All of this was after even finally letting my dad push me around in a wheelchair because I couldn’t walk any longer. I just had nothing left to give – not even to walk.

I reclined back in my hotel bed. (Shout out to Megan for recommending the bed wedge!) I was fatigued and crying, yet I couldn’t sleep. I tried to hold a book to read. That didn’t work because my head was out of control. Dystonia normally causes my head the pull backwards and sideways. My tics are normally very hidden.

Yet, I couldn’t stop pushing it forward, rolling it from side to side, clenching my jaw and neck muscles, and finally throwing down my book. The tics that normally feel like a sneeze or an itch, but I was out of control. Stress took my normally small tics and made them large, uncontrollable, and horrifically painful and embarrassing. I couldn’t let my dad into the room.

Negative Self-Talk:

With tears in my eyes, I though about how if I could see a video of how I looked, I would be embarrassed of myself. I would be horrified of how I looked. How pathetic and stupid I must look. I might have looked stupid. I might have looked like a worthless person.

What does that say about me? Because I move my head in a painful manner, I have no worth? I would never say that about another person. I would never think that about another person.

I rail against the stigma of handicaps and mental illness, but as the stress of seeing doctors (yeah, go figure) for two days had me moving in ways that had me locked away into the hotel room, and I realized that I was judging myself in the same way I wouldn’t want to judge someone else. I wouldn’t want someone to judge me. I’m sick. I’m not stupid. I’m in pain. I would give anything to be able to just cry and fall asleep when I get stressed out, but instead my body reacts differently.

I started to wonder if my different was bad. I wondered what people would think if they really knew. My emotions tell me that my body’s neurological problems are “bad,” and other people react “good.” The false good and bad dichotomy that I’ve learned and lived by since I was very young was at work. Sitting still and getting good grades is “good.” Moving around and getting bad grades is “bad.” I want to be good. Yes, there are good things and there are bad things, but not everything falls neatly into either. In this case, my embarrassing and painful health condition was neither. So, when I hurt myself from repetitive motions because I am stressed out, I believe I am bad and worthless because I am not normal. I am not being the quiet, A+ student.

I don’t have any answers. This is just my story.

I want other people to know that they aren’t bad when their health conditions make them abnormal. Aside from what is normal?, because maybe a lot of people go to their bedrooms and act out in private, I just wanted to write this because I know that I can’t be the only person who feels like this about my health conditions.

Rationally, I know that I’m not a lesser person because I have health conditions and odd neurological reactions to stress – not just odd, but really, really embarrassing. I am writing this because I cannot be the only person who deals with feeling embarrassed of myself, even in private. I cannot be the only person who feels like a hypocrite because I judge myself in a way that I would never to do another person.

I suppose, I would encourage you and myself to embrace ourselves and treat ourselves with the same kindness that we would show to other people. I know that golden rule is to treat others as yourself, but when you treat other people better than yourself because you are mean to yourself in your mind, remember that your emotions lie to you. Try to replace some of your emotionally driven thoughts of embarrassment with the kindness you would show to someone else in your situation. I know it’s easier said than done, but if I can practice it, you can too. I’m really stubborn and resistant to change, but that kind of thinking is self destructive, and I don’t want that pain anymore.

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10 Ways to be an Amazing Friend to Chronically Ill People


Chronic Illness Friendships:

I’m not going to lie. They’re hard. When you’re sick, you get kind of get flaky. You can’t make plans far in advance because you can’t predict a good or bad day. If you do make plans, it is more than likely that you’ll have to back out. I can’t even count (I could, but it would make me sick) how much money I’ve wasted on concert tickets over the years. Now, if I can’t buy a ticket the day of/it sells out, I don’t go, for example.

Chronic Illness Friendships: 10 Ways to Be an Amazing Friend to Chronically Ill People

I was inspired by a Twitter conversation to write about how to be a good friend someone with chronic illness. You need to remember that chronic illness can come in so many forms – mental health, neurological health, autoimmune disorders, among many others. Some are obvious and talked about, but others might be more hidden. However, if you know your friend is sick (maybe they send this to you…) here are some tips for chronic illness friendships!

Also, remember that chronic illnesses don’t go away. They’re chronic. It’s not like a broken leg that heals. Your friend will be battling a big monster of illness for the rest of her life. Your friendship can change her life more than you can ever know. When you get sick, friends are a precious commodity. Good friends are more precious than gold.

I will admit that this list was really hard to write. Not because the tips are hard to give, but because it is an emotionally charged subject for me. Like I said above, a good friend is more precious than gold. I don’t have the kind of friends that I describe below, so maybe it’s more of a wishlist.

Also, these tips can be a good reminder on how to be good friend to anyone. Friendships take work, if you want to have good ones.

If You Don’t Remember Anything Else, Remember This:

  • Consistency
  • Quality Time
  • Inclusion
  • Remembrance

How to Create and Maintain Amazing Chronic Illness Friendships:

  • Ask your Chronically Ill Friend (CIF) what his or her limitations are – and remember them. It is likely that you only see her on “good” days, so remember that she probably has a lot more limitations than you know about. I tend to hide mine because it is embarrassing that I can’t do what a normal 26 year old can do. And if I try to do those things, I can end up in bed for days.
  • Respect your CIF’s limitations. If your friend emails back and say that she can’t make it to whatever event or commit to something that far in advance, respect that. She won’t have the energy to defend herself by emailing back and forth. You might think you’re helping her by getting them out of the house, but she knows her limitations. Trust me, she’ll take you up on offers that she can do.
  • Invite your CIF to do things that fit within her limitations. If she’s too depressed to get dressed and go out to lunch, maybe stop by her house with lunch. Remember that maybe it could be hard to get cleaned up, but just say you won’t mind.
  • Ask your CIF what she wants to do! She might have some ideas. Perhaps you can block out an afternoon to spend time together and if your friend feels well, go do something she has been wanting to do, but hasn’t felt well enough to do. If she doesn’t feel well, maybe watch your favorite 90’s movie at home. Don’t put pressure on the time. Just commit to spending some time with your friend. The time is way more important than the activity.
  • Don’t pressure someone who is ill to push through her limits. She can end up even more ill. But, don’t forget her. She stills has feelings and craves human interaction. You don’t have to give up on her, but you may want to invite her to a group brunch instead of a night of drinking. Actually, incorporating her into group events and helping them make new acquaintances, if that’s something she is able to do, can be helpful.
  • Simple and little things mean a lot. Stopping by for coffee, even if you brew it at your CIF’s house can mean the difference between another day alone and a day of happiness.
    You might just be dropping by on your way home from work, but your CIF probably looked forward to it for days. I know when someone does that for me, I will slowly and steadily declutter, try to wash my hair, put on matching sweatpants and a shirt, etc. I will seriously and gladly prepare for days if I know a friend is stopping by for 45 minutes to chat.
  • Maintain your friendships with technology. CIFs are used to connecting with people online. Their phone might even be their lifeline. Simply texting, “Hey, how are you?” can be a game changer for a CIF. Being remembered is something that every single person craves, but the isolation that comes from being chronically ill takes that away.
  • Try to remember other things! If your CIF had a medical test, an important appointment, a birthday, or their dog got sick, a simple email or text is meaningful. Again, everyone likes to be remembered. Snail mail is fun, too! Everyone loves it. Make that trip to the mailbox a nicer one!
  • Being sick is expensive. Remember that your friend may be on disability, working fewer hours, dependent on family for financial support, etc. Insurance only covers a small portion of a lot of complimentary therapies that help with pain. Additionally, the copay on certain medications can be enough to cut in on a food budget. So, if you can pick up your friend’s library books for her or just watch a Netflix movie with her, that can be super meaningful.
  • Adjust your expectations. Maybe your CIF was your best friend, but now things are different. Maybe you are both hurting, but if you follow some of the tips above, you can show your CIF why they were your best friend and how much they mean to you.

And always be consistent!

The difference between that person who drops in and out of your life at their convenience, which kind of hurts and a friend is consistency. Personally, nothing hurts me more (regardless of health) than having a friend who may or may not be a friend. I don’t live to be friends when it’s good for someone else’s timetable. #sorrynotsorry Even if it’s only once a month, once every other month, or less than you can spend time together, you can spare 5 minutes for a text or send an email once a week.

If you are busy, it literally takes 5 seconds to send a text that says, “Lots of work this week – can we catch up this weekend?” I just timed it. Do it.

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Categories: Chronic Illness Tags: ,
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!

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Categories: Chronic Illness Tags: ,
The Doctor I Can’t Forget


The Doctor I Can't Forget: When a doctor abuses you #chronicilllness #pain #spoonie

I had a doctor. I can’t remember her name anymore. But I won’t ever forget her.

Every time I have to see a new doctor, I think about her. Every time that I have to make an appointment with the current doctor, I think about her. Sometimes I don’t pick up the phone to make that appointment because I am thinking about her.

My hesitancy to go to the doctor may seem like it doesn’t make sense. I am very sick. When we pulled my insurance records last summer, I had averaged two doctors appointments a week for two years. That’s not normal.

However, I feel like the number would have been even higher if I wasn’t haunted by that appointment. If I didn’t cry in fear before I made appointments with new doctors, maybe I would have picked up the phone more. Or I wouldn’t call my parents crying that I just didn’t want to see another doctor. That maybe the symptoms would go away on their own. It seems irrational most of the time. Every doctor is not that doctor. But in my mind, every doctor is that doctor.

I’ve never not gotten medical care in acute circumstances, but if I can help it, I don’t go. I shouldn’t be scared. But there’s that doctor that I can’t forget it.

I was 23 years old. I was living in a big city all by myself. I had a whole bunch of weird symptoms that fell all over the map. Headaches, light sensitivity, bone pain, loss of range of motion in my neck, pain all over my body, and finally extreme fatigue. At 23 years old, I had a demanding job. It was when I started training for my first 5K that I knew something wasn’t right. Over the next few months, my symptoms only got worse. Since I had so many symptoms, I called my primary care physician, who ran some blood tests.

It was 8 AM, and I was on my way into the office when my cellphone rang. My primary care doctor was calling to break the news that I had lupus. I wasn’t sure what lupus was, but I knew it was bad. I turned the car around and drove to the doctors office to pick up my medical records and test results. Then I made the fateful call to that doctor. To that rheumatologist.

I went to see that doctor. I showed her my test results and she told me that I didn’t have lupus. She pushed on some tender points and told me that I had fibromyalgia. She gave me the card of a pain specialist and left the room. Again, I was 23 years old. I didn’t know what a pain specialist did. I knew I was in pain, but I didn’t make that appointment. I just went home.

A few weeks later, when I was still in excruciating pain all of the time, I called the doctors office back. I asked for an appointment while I was crying. The receptionist work me in for that afternoon. I showed up on time, parked in the parking garage, and took my spot in their waiting room. Oh, how I could tell you about all of the waiting rooms.

Not long after sitting down, the nurse call me back to the exam room. The doctor walked in with an air of anger. I can’t even remember what she said to me, but she left the room with the door open. I’ll never know if she left it open on purpose or not, but since she did, I could hear her berating her nurse for calling me back before the person with the regularly scheduled appointment. I guess verbally assaulting her nurse wasn’t good enough, because she came back into the exam room to do worse to me.

She asked me if I had made the appointment with the pain specialist. I hadn’t. I was in a lot of pain, not thinking clearly, and because I didn’t know what a pain specialist was, it wasn’t a top priority for me. I couldn’t cook my own meals anymore and I could barely do my laundry, in fact, bathing was problematic. It was all I could do to make lean cuisines in the microwave and get to work. If you’ve ever been in a ton of pain, you’ll know what I mean when I say that I could not think clearly. I had supportive parents, but they lived in Alabama and I lived in Northern Virginia. There was no one to help me with the practical parts of life.

So, that doctor decided to take out her frustrations on me, I suppose. After yelling at me for not calling the pain specialist, she proceeded to pull at every joint in my body. I did not have joint pain. My joints were not inflamed. There was no need to pull on them. As she started pushing and pulling and yanking at major and minor joints, she continued to yell at me. She kept yelling that I had hypermobile joints, so that’s why I was in pain. I yelled over her for her to stop. I was in tears because she was hurting me. Yes, I do have hypermobile joints, but I’ve had those my entire life. Over extending my hypermobile joints, like she was doing, was only adding to my pain.

After she was done verbally and physically assaulting me, I had tears streaming down my face. I collected my things and went back to the parking garage. I won’t ever forget the parking garage attendant, either. As I paid him for the privilege of parking at the doctors office, he made a comment about the look on my face. I was that upset, I suppose. He commented about how displeased I looked. I told him he was right, and that I would never be back.

So, I ended up seeing that pain specialist. She gave me a bottle with 90 pills a Vicodin and no instructions. The plan must have been to keep me doped up to forget the pain. No one was interested in why I developed fibromyalgia at 23. I had to be my own healthcare advocate and do that for myself.

I never took any of those pills. I was so scared. I remember finding them in the closet after I moved to the Charlotte area. They were woefully out of date, but I was still in pain. I took one.

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Categories: Chronic Illness 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.

Thanks,

Sarah

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

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