Incongruence (Or why I can be smiling and still reporting a pain scale that's off the charts.)

In mental health, we spend a lot of time evaluating a person's mood (what they're feeling, how they're feeling, if they're happy or depressed --or any variety in between) and their affect (how they appear). Most of the time, in the general population, people reflect how they feel.  So if they're happy, they're smiling; if they're sad, they're not necessarily smiling.  In the field, in these cases, we say that someone's mood is congruent to their affect.

But sometimes, people who are happy do not reflect this.  Or they may not appear to be much of anything, but they report differently.  In these cases, we indicate that this person's mood and affect is "incongruent".  (Yes, spellcheck, that really is a word.)

In my 20+ years of living with chronic pain and invisible illness, I learned that I don't want to live in the pain.  I'd rather be smiling and laughing.  Humor tends to be my default.  (And I'll be the first to make jokes about myself.)  Anyone who's ever been in one of my trainings or spent time with me as a supervisor knows that I have a dry sense of humor and I'm not afraid to use it!  (But only when appropriate of course.  :) )

But I also tend to use it with my medical team.  I tease my acupuncturist that he's my monthly torture appointment (those cups hurt!) and I joked with my rheumy the other day that my pain spike is related to the seasonal change that we have yet to have, but that my body says we should be having. Humor also tends to be my mask.

I've become so practiced at wearing my mask that the only people who see me not wearing it are those who are the closest to me.  The ones who know me really well can see through the cracks in my mask when I'm not doing well.  They can see past the humor.

But the doctor I've just met for the first time?  They only get to see my mask.  I might not make jokes with them, because they won't realize I'm joking, but they get my pleasant affect and demeanor.  And yes, I get double takes when I present as pleasant, smiling, and report an '8' on the traditional pain scale.  Or I receive looks of disbelief.

What a lot of people don't realize is that handling an 8 with humor--when possible--makes that pain feel better than handling an 8 with depression or anger.  It's still an 8, but with a little bit of humor and pleasantness, I can fake my body into believing that the pain is actually a 7, even if it's just for a few moments at a time.

This incongruence is why I have such a difficult time when medical professionals attempt to rate someone's pain only by how they're presenting, rather than asking for a self report.  What someone else's definition of what a particular pain level should be based on what an individual presents as--particularly if they have never experienced said pain level--isn't an accurate reporting tool.  The pain scale is really a self-reporting scale.  It's my experience of the feeling of pain in my body.  That experience--the sensations of pain, the location, the quality, the severity--will change from person to person.  My "8" might be someone else's "10" or it could even be someone else's "4".  But I've dealt with this so long that there are extremely few medical professionals who could come close to evaluating my pain level by studying my facial expressions and body language.

Now, as a caveat, are there people who will report high pain levels to get the "good stuff"? Absolutely.  But even those people should not be criminalized; addiction is a disease and should be treated as such. And by assuming any person who reports a high pain number with an incongruent presentation is simply drug seeking?  That's just doing a disservice to individuals experiencing chronic pain.

A link to the definitions of conditions I have in my medical chart.

Suppressed Immune Systems (Or My Body Is So Busy Attacking Itself, My Immune System Can't Fight Things Off)

It's a busy day at work and suddenly, from across the room, someone sneezes. Immediately, my senses go on high alert and my mind goes into Def-com 5 mode, running through the lists of my "avoid illness" supply list at home.  Or I'm spending time with family, and someone coughs a bit, I try not to make it obvious as I avoid being close to them.

And no, I'm not a hypochondriac.

The unfortunate reality is that a common cold or the latest flu virus that makes a "normal person" sick for a few days can knock someone like me out for a few weeks.  The fact is that when someone's immune system is occupied with attacking one's own body, there's not a lot left over to fight off the viruses and bacteria that are out there that makes people sick. And so it means that it doesn't take much exposure to something to make one of us sick and we can get sicker with the bug and for longer than the average.

All this in addition to the pain and fatigue--how did we get so lucky!

I currently have a cold that my husband brought home with him.  As soon as he felt something coming on, we went through the steps.  Zicam for both of us, check!  Healer's Chai Breath Drops for me, check! Halls Vitamin C Drops, check!  He got over it very quickly, in maybe a day and a half.

I'm on day 5 of the cold, and it seems to still be picking up steam.

Chronic Pain Conditions, Autoimmune Conditions, and all that are associated already tend to isolate those individuals dealing with them, but to have to avoid people during cold and flu season?  That tends to just add to the feelings of isolation.  So how does one deal with all of this?  Please note: This is not a substitute for medical advice from your physician. Always seek out a physician for medical advice pertaining to your health circumstances.

Here's a few tips I use to try to stay as healthy as I can:

• Good sleep hygiene
• This means going to bed at the same time and getting up at the same time everyday;
• Minimizing television and other computerized device usage in the evenings before bed; 
• Minimizing caffeine intake in the late afternoon and evening; 
• Minimizing alcohol intake (it can keep people awake and disrupt sleep); and
• Minimizing sugar in the late afternoon and evening.
• Good hand hygiene
• Not sharing utensils or drinks
• Regular light exercise
• Stress Management techniques
• And the utilization of homeopathic/holistic treatments when necessary.  (Please note that I am one of those individuals unable to take the flu vaccine, and the common antiviral medications make me more sick than the virus does typically.)

The fact is that I know I won't be able to avoid getting sick in some instances, and then I rely on water, tea and honey, homeopathic treatments, and good ol' soup (seeking medical attention when the symptoms appear to be more severe or different from what is associated normally with a cold or flu virus).  

And I tell my family to buy stock in Kleenex Tissues.  :)

Definitions of Medical Conditions Listed in My Medical Chart

ADHD and Fibromyalgia (Or...Squirrel!)

Okay, so I have something to admit.

I get distracted easily, especially if I'm dealing with a lot of stress. I've joked for years that I had some weird form of Attention Deficit Hyperactivity Disorder, but as it turns out, there have been a number of studies showing that there is a link between ADHD and conditions like Fibromyalgia and Chronic Fatigue. And when you think about it, it makes a lot of sense.

Disrupted Sleep
Let's face it: when you don't sleep well at night--or sleep well consistently--it impacts the ability to concentrate and focus on tasks. And Chronic Pain Warriors are notorious for disrupted sleep. Since we have disrupted sleep, our ability to concentrate and focus on tasks can decrease, and the more the sleep is disrupted, the more challenges we have.

Increased Sensitivity to External Stimuli
Working in mental health, I've worked with kids who deal with ADHD, and I once heard a description that I think describes the experience perfectly:  Sitting in a classroom, trying to focus on the task in front of the student, but the brain keeps picking up on things like the ticking clock or the rustling of papers and it makes it difficult to focus on what the teacher is saying.

Those of us with conditions such as Fibromyalgia have an increased sensitivity to sounds, smells, and other external stimuli. So, the ticking of the clock can be extremely distracting (and potentially irritating).  In times of increased stress, our sensitivity can increase, making our ability to focus even more challenging.

Increased Fatigue
This is also linked to problems sleeping, but living in a body that is in constant pain is fatiguing. When the body--and brain--are fatigued, the ability to concentrate and focus on tasks becomes more challenging.

Co-morbid Conditions
First, "co-morbid conditions" means other conditions that tend to exist in addition to the "main disorder".  For instance, for individuals with Fibromyalgia, it's not uncommon to also develop conditions such as Reynaud's Syndrome, Hypoglycemia, or Migraine.

Using these three as examples, if you're dealing with poor circulation in your extremities, such as in the case of Reynaud's, it's going to be difficult to focus on things when your hands and feet feel as if they're freezing off.  Or in the case of a Hypoglycemic moment (low blood sugar), the ability to focus can fly out the window. And Migraine? Well, anyone who has experienced the nausea, light sensitivity, and feeling of inexplicable pain in the head can tell you how hard it is to focus when one of those things hit.

While I was writing this post, I found myself distracted a number of times by the cars driving by outside, the sound of the A/C clicking on, the show on the television, my phone, more cars driving by, by a piece of paper on the front lawn, by my dog dreaming on the floor, by the headache that's starting to form because of this cold that I've caught....

The list can go on and on. In times of higher stress (physical, mental, and/or emotional), my ADHD is worse. It can be exhausting, working to focus on tasks, particularly if I find myself getting distracted easily. My husband has learned that if he wants to talk to me about something, he has to make sure he has my full attention before starting the conversation. It's not uncommon for me to become distracted by my own thoughts while I'm having a conversation with someone. It's definitely worse when I'm having more stress or pain.

The biggest lesson that this has taught me is that I need to slow down, focus on one thing at a time, and be gentle with myself when I'm more distracted.  I've learned to laugh it off at times, despite the fact that in a world that moves 100 miles an hour, it's not the easiest thing to do. It takes time, practice, and patience.

Be gentle with yourself today. Wishing you low pain, high energy, and laughter.

Definitions of Medical Conditions Listed in My Medical Chart

Everyday tasks that become challenges for Chronic Pain Warriors/those with invisible illness

In the field of mental health, we often talk about a client's ability to perform Activities of Daily Living (or ADLs, because we mental health types tend to talk in alphabet soup). These are activities related to hygiene, ability to cook and care for oneself, ability to complete chores, ability to function appropriately in social settings, ability to budget and manage finances, and just generally things that most adults are able to do for themselves.

There are times when adults aren't able to complete ADLs for themselves. Illness tends to be a big factor in this, whether it's physical or mental illness. Those who know my professional persona typically see someone that's fairly high energy, on-the-go, jumping from one task to the next, being the calm in the storm, great in a crisis type of person.  I'm the one who can strike up a conversation at the hair salon or in the grocery store with complete strangers.  It's not fake; I genuinely care about people and I genuinely enjoy what I do.  I enjoy what I do for a living, and I want to be the kind of person other people enjoy working with.

But I have to admit, it's an act. I don't fake being sick; I fake being well.  And yes, there are times when I can be considered someone who is unable to complete their ADLs.  There are many everyday tasks that can be difficult for individuals with chronic pain/invisible illness to complete.  Here are a few things that can be challenges:

Showering
Showering can be an interesting experience.  Many people with autoimmune disease/fibromyalgia/chronic pain experience a condition called Dysautonomia, which can cause exhaustion, tachycardia (fast heart beat), and the feeling that one might faint (or that one might actually faint).  While the heat from the shower can help ease some of the pain and relax muscles, the heat from showering can also cause other problems.

For someone like me, without a working internal thermostat, the heat can cause me to overheat quite easily.  Conversely, a cooler shower can also cause problems because the cooler water can trigger my Reynaud's phenomenon.

It's not uncommon for me to sit in the tub of the shower to bathe while the shower is running, or to take baths and use the handheld shower-head to wash my hair.  But there are days when bathing in the morning just does me in for the day.

Cooking
I love to cook, and I'm a pretty good one.  There's nothing quite as exciting as getting new recipes or walking through the produce section of a Whole Foods or a farmer's market during the summer months and seeing all of the great produce.  I can come up with fantastic recipes off the top of my head, and I love cooking with fresh herbs from my garden.

But I had to learn awhile ago that I had to make a choice.  After working all day, I don't have the energy to cook meals.  Some days, I barely have energy to heat something up in the microwave. Sometimes I just hurt too much to stand any longer.

This is where it becomes a trade-off. I'm fortunate in that my husband is willing to do much of the cooking and I try to help with finding easy and health recipes that can make leftovers. I still get to cook at times, but it's usually relegated to weekends and I usually throw something together for the crock pot.  I have to be honest, though.  If it weren't for him, ensuring that I ate regularly would be a problem.

Cleaning
Flat out, I pay someone to come clean regularly. I learned a long time ago that if my priority was being able to work that meant two things when it came to cleaning: 1) I wasn't going to be able to work full time and clean my house regularly and 2) paying someone else to clean is a necessary expense for my health.

Now, housecleaning happens every other week, and so we still have to do things like dishes and laundry and general day-to-day cleaning, and that can still be a challenge.  I've had to be okay with shortcuts on some things.  Again, my husband has had to take on more than his fair share of chores. And I've had to learn to ask for help...which I'm still working on.

Paying Bills
This is where brain fog can really cause problems.  It's so easy to simply forget to pay a bill unless there's some sort of system in place.  For me, I actually put which bills to pay when on my calendar on my computer and my banking is all online.  (The issues with my hands have become worse over the last few months and typing is infinitely easier for me than writing checks.)  But I admit, there are times when due dates slip by.

Part of self-care means taking care of these activities. There are some aids to help with showering and cleaning, but it can also mean sometimes those of us dealing with Chronic Pain/Invisible Illness need to reach out and ask for assistance. It's hard to admit that one has trouble with tasks that a "normal person" takes for granted, particularly when we're talking about a disability that's invisible.

To friends and supporters of someone dealing with Chronic Pain/Invisible Illness, be there. Be willing to listen and support. Don't judge. Don't make jokes about these sorts of things. Be honored if they ask you for help and support, because that means they trust you.

To the Chronic Pain Warriors/Individuals with Invisible Illness, let your supporters help you. Be gentle with yourself. And do what you need to do to take care of yourself, even if it means having to put other things on that "to do" list aside.


Definitions of medical conditions listed in my medical chart

The Challenges Chronic Pain can Place on Relationships (Or Chronic Pain is SO Not Sexy.)

Relationships--whether they're romantic or platonic--are difficult without any additional factors.  I'll talk about friendships and chronic pain in a future blog post and so I'll be focusing on romantic relationships for the purpose of this post.

The fairy tales would have us believe that the difficult part of relationships are the courting/dating/getting to know each other stage and then it's "happily ever after", but anyone who's been in a serious relationship for any length of time (and yes, I'm including marriage/domestic partnerships in this as well) will tell you that the hard work starts after the honeymoon stage and continues on throughout the length of the partnership.  It's hard work when both parties are healthy. But, when one is sick, it adds another layer of stress onto the relationship.

Let's look at a scenario.  Think about a wedding you may have attended or a wedding you saw in a movie or show that used the vows "In sickness and health."  Usually, both parties are happy and shiny, and the words "in sickness" don't really sink in.  It's an abstract concept.  "Of course, I'll stick by my loved one if they're ill" is easy to say when their loved one has only had a cold during the course of the relationship until this point.  Chronic pain/chronic illness is a completely different ballgame.

I'm very fortunate in my marriage.  My husband knew I was dealing with Fibromyalgia when we met. During the years before we got married, he saw me at some of my sickest points. Still, neither of us could have predicted the two surgeries I've had or the other diagnoses to come along or how my health would decline and that's added quite a bit of stress, but he understood that there would be good days and bad days.  He understood that my desire to work and live my life meant that he would have to take on more of his fair share of the household duties.  (And when it was determined this wasn't a strength of his, the housekeeper we invested in was the best for both of us and our relationship.)  This doesn't mean he doesn't get frustrated with me or my body at times; he's only human.  But in many ways, because we've dealt with some pretty serious things, we don't get caught up in the "small stuff drama" as much.  (One positive thing about illness is that it will put things into perspective.)

I know a lot of Chronic Pain Warriors who have not been as fortunate.  Many individuals who have been diagnosed later in life have gone from healthy (prior to marriage or commitment) to chronically ill, and their partner doesn't get it.  And quite honestly, I understand.  I see both sides of the issue. The ill person who was once full of life has now had their life reduced to being sick and their own frustration at not being able to do everything they once could is high.  But their partner--perhaps despite saying they'd stick around "in sickness"--didn't sign on for this.  The healthy partner sees how the sick one has changed, and in many cases, now becomes a caregiver for the sick partner.  The relationship dynamic has now changed.  There may be feelings of resentment on both sides of the relationship.  The caregiver now sees their partner in a different way and may feel less than romantic feelings toward their partner, which can really change things.

Please do not misunderstand me; I'm not saying that romantic relationships have to fail when someone is chronically ill.  Many relationships fight their way through the battle and come out stronger.

Communication is key--constant, open, and honest communication.  The Chronic Pain Warrior needs to communicate their needs, their frustrations, and their desires and the partners needs to communicate their own needs, frustrations, and desires.  It's important to be able to communicate openly about all of this, because both sides have needs, frustrations, and desires, and not being able to acknowledge or communicate them is only going to lead to resentment.

And it's not an easy thing to listen to your partner tell you, "I'm frustrated with you because..."  It requires a certain level of openness and maturity to not respond with, "Well, yeah?  I'm frustrated with you because...!"  But if you can both communicate what you each feel challenges are, that leads to the opportunity for a conversation that can create solutions, or at the very least, clears the air of any lingering resentment.


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Since this is a post on romantic relationships, I would be amiss for not discussing the impact of chronic pain on a sexual relationship.  (This is the Not Safe For Work (NSFW) portion of the blog.) For those who identify as asexual and are in relationships, this may or may not apply to you.

There are people out there who enjoy pain in a sexual manner, but I have yet to meet a Chronic Pain Warrior who's a masochist.  (Not that they don't exist, just that I haven't met one yet.)  In my experience, people who experience chronic pain find that it doesn't add to feeling sexy. Fibromyalgia, Lupus, and other invisible illnesses can also impact reproductive systems, adding to more pain and discomfort, which can account for low libidos. The fatigue that's associated with these conditions can also be problematic; who wants to have sex when you have no energy?

I want to address an issue that may make me very unpopular.
I belong to a number of Chronic Pain/Autoimmune Disease/Invisible Illness support groups, and the following question occasionally comes up:  How do I get my partner to understand that I'm in pain and can't have sex with them?

Typically, the individuals posing these questions are women and they're referring to their male partners.  (Again, this is not to say that men don't experience chronic pain.  Chronic pain can impact all genders.)  And the responses are typically from other women lamenting how "men don't get it" and "he'll just have to deal with [not having a sexual relationship]".

I don't agree with this stance.  And before anyone lam basts me in the comments, hear me out. Sex is healthy.  It raises endorphins (which can improve mood and decrease pain level), and increases intimacy and connection with your partner (which can also improve mood).

I'm also an advocate for couples creating their own definition of "sex."  There's this heteronormative idea that "sex" is only penis-in-vagina penetration, but people all over the sexual orientation spectrum can inform couples differently.  And while what may work for one couple may not work for another, it doesn't make it any less sexual or intimate.

I'm an avid reader of Dan Savage, advice columnist who can be somewhat controversial at times, but he makes some great points when it comes to mismatched libidos negatively impacting relationships. That happens when both parties are "healthy", but what happens when it's an illness that's caused a rift in your sex life?  Simply refusing to acknowledge the sexual needs of your partner isn't fair to them.  And you might be refusing to acknowledge your own sexual needs as well.

Because it's okay to have a disability AND be a sexual creature.

What many don't recognize is that people with disabilities (including chronic pain) can have desires to be sexual as well. There may just need to be some workarounds to make things happen. Here are some resources for the over 18 crowd:

• Good Vibrations- A great place to shop for toys and stuff, but also a great resource for education and support.  They are extremely "woman friendly" and cater to all genders and sexual orientations.  They have extremely knowledgeable staff, and if you're in the California Bay Area, check out any of their Bay Area locations.  (And check out their articles on Sex and Disability.)
• Liberator - In short, they sell furniture for sex.  Their wedges and ramps can provide extra support, which can be very helpful for individuals with chronic pain and conditions like Hypermobility Joint Syndrome.  The furniture is constructed out of sturdy foam that's lightweight, and it can also be used for restorative yoga poses and meditation.
• Book:  The Ultimate Guide to Sex and Disability by Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette is a great resource for a multitude of disabilities, including Chronic Pain

Are there times when sex just can't happen? Of course. It all boils down to open and clear communication with your partner.


Definitions of Medical Conditions Listed in my Medical Chart

The Expense of Chronic Pain (Or can I afford my groceries and my prescriptions this month?)

Chronic pain, like any chronic illness, is expensive.  In addition to the time spent in doctors appointments, medical tests, procedures, and everything else healthcare related, the amount of money that individuals spend on healthcare is huge.

Individuals with chronic pain spend, on average, $1000 per month on their healthcare. According to Johns Hopkins University, the annual cost of chronic pain in America is upwards of $635 billion a year.  This includes costs such as lost time from work and disability claims in addition to the costs to the healthcare system.  So, let's have a real conversation about the costs and factors here.

"Affordable" Healthcare

Before I jump into this, I want to state that I have absolutely no interest in getting into a political debate and my writing on current legislation is based on my professional experience in healthcare administration and my personal experience as a healthcare consumer in addition to the legislation and reported consequences of the rates of reimbursements.
The Affordable Care Act has been met with a lot of criticism, but the intent behind a plan for national healthcare was to address a few major problems facing the healthcare system:

1. Overcrowding and inappropriate utilization of Emergency Resources.  Emergency Departments across the country have been dealing with overcrowding and long waits for years, and the problem is only getting worse.  This leads to really long wait times for care and using resources that had been allocated for emergency services for reasons that are not emergency related. (And frankly, emergency room visits are expensive!)
2. Individuals who are not insured are unlikely to seek out preventative care and will frequently wait until it's an emergency situation (or close to it) to seek out care...and they visit the ER/ED to do so.  The lack of preventative care leads to a worsening of conditions that are treatable and preventable, leading to either needing (more expensive) treatment or, unfortunately, an untimely death that could have been prevented.  (And did I mention that emergency room visits are expensive?)
3. With the increase in ER/ED usage, high cost of usage, and lack of insurance coverage (or reimbursement rates), who pays for the services rendered and resources utilized? Unfortunately, the costs have to be covered somewhere, and so the price of healthcare gets jacked up elsewhere to cover the costs. 
4. And an issue not directly related to the challenges of the emergency resources, there was a lack of coverage for anything that was considered a "pre-existing condition", which is particularly problematic for individuals with chronic illness.

So, the intent behind it was to get everyone covered with some sort of healthcare coverage (which was supposed to be affordable--I'll get to that in a moment) which included preventative care, so people could have better overall health leading to better long term health outcomes.  Of course, the ER/EDs are still available to emergency treatment, but the hope was to decrease the need for people to go to the ER/ED rather than primary care.  It sounds like a win-win.  Except...

Has anyone checked out the cost of health insurance?

There is a larger section of the population who now qualifies for fully subsidized healthcare coverage under Medicaid.  Medicaid covers quite a bit of healthcare costs without a cost to the patient, and Medicaid is publicly funded.  Many people are covered under their employer or spouse's/domestic partner's insurance coverage, which can range from great coverage with little cost to the employee to not-so-great coverage with a great cost to the employee. And then there are millions of people who are in the gap between the two, and have utilized sites such as HealthCare.gov or, in California, Covered California to find insurance coverage.  There are different levels of coverage that are available and recommended based on how often someone may access care vs. how much they want to pay out of pocket for deductibles and doctor visits vs. how much one wants to pay for premiums.

So for people in the unsubsidized groups, it can get really pricey.

Up until recently, I was enrolled in a High Deductible Plan where I had to pay for services (including all tests, doctor's visits, prescriptions, etc) out of pocket until I reached the deductible of $5000, but my employer covered all premiums, and after I paid the deductible, I had no co pays for anything. Using the Health Savings Account, it actually worked out fairly well...I could divert the money I would've spent on premiums to the HSA and ended up saving money in the long run.  This was actually a good plan.
But some High Deductible Plans still have co pays, so the insured ends up paying the high deductible and then starts paying the co pays for each office visit, prescription, and whatever co pays are required.
So, healthcare is expensive.  Having spent time on High Deductible Plans, I have had the opportunity to see how much my doctors' visits are, how expensive my blood tests are, and (in particular) how expensive my prescriptions are.  It's been eye opening, and I'd like to share that with you.

Where are the expenses?
(I am using myself as an example; some individuals with chronic illness will have more expenses, some less.  And since chronic illness and chronic pain can go in waves, there are some months where there are very few-relatively speaking-healthcare expenses and some months where the expenses are high.)

In the past year, I've had:

25 doctors' visits (at about $150 per visit)
5 ED visits (at about $800 per visit)
30 or so lab tests (cost depends on the specific test)
5 medical tests (ultrasounds, scans, etc.) (Again, the cost depends on the specific test)
1 invasive medical procedure (REALLY expensive)
1 major surgery (REALLY, REALLY expensive)

Regarding prescriptions, I regularly take 5 prescription medications daily (in addition to the supplements I have to take).  (Side note:  I joke when I say I take a handful of pills on a daily basis, but in truth, I take massive amounts of pills on a daily basis just to keep me going.)  And these do not count the high amount of prescriptions I have that are designated "prn" (or "as needed").  My nightstand is a pharmacy.  Our medicine cabinet is filled with bottles.  We have a space in the kitchen for medications that need to be taken with food and supplements to be taken in the morning.

Fortunately, all of my prescriptions are now generic, however due to a shortage in one of the medications, the cost suddenly jumped from less than $20 for a month prescription to $180 for a month for a generic medication!  At one point, I was paying close to $300 a month for all of my prescriptions, and this is on top of the other healthcare costs.

And then there are the costs of healthcare which insurance (or at least my insurance) doesn't cover. My acupuncturist is $75 and I see him once every three weeks.  My massage therapist is a monthly visit at $100.  My supplements to help me sleep?  Add another $50/month to the bill.  My gym membership--which I use for the pool and the weight training portion of my treatment plan--is $55 per month.  The essential oils and other topicals I use on a regular basis to manage my symptoms? Add another $100 to the monthly budget.

These aren't "incidental" costs.  These aren't optional costs.  If I want to stay healthy (or as healthy as I can get), I have to stick to my treatment plan.  Health shouldn't be optional.

Final Note:  And there are programs to help offset some costs, such as prescription medication. (Unfortunately, I don't qualify for any of them.)  But many pharmacies can assist you in working with those patient assistance programs if you have difficulty paying for your medications.


Definitions of Medical Conditions list in my Medical Chart

Don't Judge Me on What You Can't See (Or The Invisible part of "Invisible Illness")

I read another post on FaceBook today about a young woman who legally parked in a disabled accessible space (with her placard hanging from the rear view mirror) who received a nasty note on her windshield because she "took a spot from a person who was actually handicapped."  The post went on to detail that the young woman has Lupus. The fact is that this sort of judgement shouldn't happen.  If someone has a disabled placard, that's between them, their doctor, and the DMV.  (If someone parks in a accessible spot without a placard or plates, it's okay to say something.  In fact, please do.)

This isn't the first time I've read of individuals with invisible illness being harassed over their legitimate use of accessible spots.  Heck, it's happened to me a few times.

This is what someone generally sees when I get out of a car: A youngish woman who doesn't require assistance walking (most of the time) and has no discernible disability who can walk at a moderate pace.

There's a lot they don't see.  They don't see that I'm likely in a great deal of pain from walking.  They don't see that I don't have the energy to park further away and still be out and do what I need to do. They don't see that when my body says "I'm done", it doesn't give me a lot of warning.  They don't see my balance issues or my dizzy spells and they don't know that I'm prone to tripping over my own feet and injuring myself.  They don't feel my heart pound from movement when I'm particularly fatigued.

This occurs in any situation where someone is using something deemed "accessible" but has an invisible disability.  And quite frankly, no one should have to explain to anyone why they require use of disabled accessible items, such as parking or the bathroom stall.  It's no one else's business.

I don't have any sage advice for dealing with people making ignorant comments.  Over the years, I've developed a comfort level confronting comments such as these in a direct, yet diplomatic manner. But it's not easy for everyone to do that, and I completely understand those who choose to ignore it and say nothing.

To the people who pass judgements on us, learn our stories.  We don't share the same story, our pain isn't the same, our experience isn't the same, but you don't need the specific reasons for why we require accessible spaces and places.  Despite what you see, we ARE disabled, and that's something we'd prefer you accept with no comment.


Definitions of Medical Conditions Listed in my Medical Chart