Chronic Pain and the Pain Scale Fallacy (or Do Chronic Pain Warriors even use the first few digits on the scale?)

A common question that people face when interacting with medical professionals regarding medical issues is "what do you rate your pain?"  It's a scale from 0-10 where 0 equals no pain and 10 is extremely severe pain.  It resembles something like this:

Doctors, Nurses, Physicians Assistants, and Nurse Practitioners use this as a guide to gauge someone's pain, and it's based on patient self-report.  It's very obviously subjective--the patient has to quantify what they're experiencing into a number--but I get how it's a beneficial tool for medical professionals.  How else can they figure out how bad the pain is without a report from the person experiencing it?

The problem?  For many chronic pain warriors, we may not have experienced anything less than a "3" for years, and this starts to skew our scale.  And for many of us, we regularly exist in the "severe" range.

There is not a day that I do not experience some level of pain.  Some days, the quality of pain is more achy, as if I am experiencing the flu.  On others, it may hinder my ability to walk or breathe.  The unfortunate reality of the conditions is the unpredictable nature of it. While there are definitely things that can exacerbate the pain (i.e.-overexertion, certain foods, certain weather conditions, emotional stress, etc), sometimes there is no rhyme or reason to an increase in pain.  Lately, my "default" pain level has been a "6"--and that's on good days.

But I--like many chronic pain warriors--continue to smile and work through it, and this throws a lot of medical professionals off.  Recently, I had a visit with my primary care and I'd been dealing with a pretty rough case of sciatica pain.  When asked where I'd rate it on the pain scale, I calmly said "7".  I wasn't crying; I'd even cracked a few jokes (because I use humor to deal with a lot of things).  My doc knows me, though.  She knows I'm extremely skilled at hiding pain and fatigue (20+ years of practice), so her only response is "A 7?  That's pretty severe.  We need to get that under control.  I'm going to make a referral to the pain management program."  My doc's pretty awesome that way.

That's not the experience with all health care providers.  A lot of providers will actually assess a person's pain based on how they appear.  So, if you walk into an ED and you're smiling, playing games on your phone, and generally seem alright, providers may assess you as having low pain.  (And quite honestly, if you walk into an ER smiling and playing games on your phone, even I would have to ask why it couldn't wait until you could see your primary care the next morning.)  Conversely, if you enter the ED grimacing or doubled over, they're likely to assess you as being in some form of discomfort.

Admittedly, these are two pretty extreme examples, but in the Emergency Room, the staff are accustomed to making quick assessments to determine what the problems are.  It's a strong skill to be able to quickly eye a person and assess them, and move to start treatment. The challenge comes in when people are accustomed to wearing a mask over their pain. It hasn't be completely uncommon for me to enter the ER in extreme pain, but to show little outward reaction to it.  Or, for that matter, to be making some jokes.  

So, here's the difference between a "normal" (non-Chronic Pain Warrior) and Chronic Pain Warrior:

Or, at the very least, perhaps Chronic Pain Warriors need our own (expanded) scale:

One of the other issues with the pain scale is it doesn't address the differences in severity, quality, or location of pain.  For instance, I may have widespread pain that's achy, but using to the sciatica pain as an example, that was very sharp and acute nerve pain across my hips and down my back in addition to the overall achiness.  I was also dealing with a migraine, and my knee was acting up. There isn't enough space on the form I had to fill out prior to the appointment to write out all of that.  

The pain scale isn't a bad tool, but it doesn't provide an accurate representation for the pain that Chronic Pain Warriors experience, and this leads to even more frustrations in treatment for both the doctor and the patient.  

Definitions of the conditions listed in my medical chart

Systemic breakdown of the body (or, I wish my hair would stop falling out.)

Autoimmune conditions slowly take our bodies and break them down, and the evidence of this can be seen in a variety of ways.  Not only do we experience the fatigue, chronic pain, and other wonderful effects of autoimmune disease, there are impacts that many don't realize occur.

Eyesight

Lupus has a documented negative impact on the eyesight, but many people experience some loss of vision/blurry vision with Fibromyalgia.  

I had beyond perfect vision as a child and teenager.  But as I started college, I noticed a decline.  Initially, I blamed it on the professor that really liked to use overhead projectors. (For the younger generation, these were machines that projected an image of whatever the instructor put on the table, in the form of plastic sheets with writing or pictures called transparencies.)  This prof really liked her transparencies, and just imagine trying to read (and copy down) pages full of Times New Roman in a size 8 font, and you have an idea of the pain we experienced.  About halfway through the semester, I realized that I was having more difficulty reading the transparencies, and that I should probably see the eye doctor. (As it turns out, you can only scoot your desk so close to the screen before people start to notice something's up.)

So, I saw the eye doctor, and there had been a slight decline in my vision, but nothing major, and I started wearing glasses for driving and when I was in class.  (The problem was that since I was in class or driving all of the time, I pretty much always wore them.  I ended up switching to contact lenses a couple years later.)  And with every visit, my vision became just a little worse.  It was nothing to be extremely concerned about; my eye tests came back normal and my eyes were otherwise healthy.  

And then, about three years ago, I had a sharp decline in my vision.  Again, the other tests revealed no other problems, and so we had a bit of a medical mystery on our hands.  (Now, everyone realizes there were two factors at hand: Autoimmune disease and a medication I was on at the time.)  

Hearing

This is one I struggle with admitting is an issue.  There are certain tones that I'm losing the ability to hear.  It's been a pretty gradual decline, but it's definitely noticeable.  I can usually cover it pretty well by reading lips when people are talking or (when I can) minimizing other noise around me, but I've noticed a lot of people like to turn away when speaking, or cover their mouth when speaking, or speak softly on the phone.  I have frequently misheard things that were said (and in some pretty funny and creative ways), and it can definitely be challenging.  

On the other side, there are sounds that I can hear all too well, and cannot tolerate.  I don't do well with loud noises (it's just overwhelming for me) or certain high pitched noises.  For instance, my husband is a handyman, and uses a lot of battery operated tools.  When he charges those batteries, they emit a very high pitched annoying sound that makes me want to hide my head in the couch to avoid it.  It's one of those noises that simply grates on my nerves and almost causes physical pain.

Touch

Being touched can be painful.  Hugs and handshakes can be painful because many people don't realize how tight they're squeezing, causing pain to our already tender muscles and joints, but just touching the skin lightly can be painful and/or irritating.

There are days that my clothes hurt.  It's not that they're too tight--I make sure I buy clothes that fit well and comfortable made from lightweight fabrics that are soft on my skin--it's just that my skin is irritated by the slightest touch, slightest pressure, slightest movement upon it. In my household, we've taken to calling this "my tactile stuff" to differentiate it to the pain I experience from too my pressure, and it essentially means "don't touch me right now."  

Experiencing this can be extremely isolating.  

Smell

While other things have declined, my sense of smell has grown very acute.  This is likely related to the Multiple Chemical Sensitivity.  If the trash hasn't been taken out, I can definitely tell.  But, on the plus side, I can tell when fish is going bad before anyone else.


And finally, this isn't one of the five senses, but my hair is falling out...

I've gotten to the point in my life where vanity is a waste of time and energy, but I still like to look good when I can.  I grew up having extremely thick and beautiful hair.  It was so thick that hairdressers would have to thin it out some to get it to do anything.  And then, about 10 years ago, I started being able to pull handfuls of it out after I washed it.

Initially, I didn't think anything about it.  It's said that we lose 100 hairs a day, so I just figured it was part of that.  (No, it didn't dawn on my that that number was body wide.)  And then I noticed the bald spot forming on the front of my head.

So, I started getting my hair cut shorter.  I've learned if I keep it shorter, it takes the extra weight off of the hair, and I tend to lose less hair, but I'm still losing it.  Generally, it's only noticeable to me, my hairdresser, and the coworker who teased me that they could follow me around the building by a trail of my hair, but it's definitely something I'm a little sensitive about.  

I've recently stopped coloring my hair, and have been surprised to find out that the warm brown color that it was once has now become a dark, almost flat brown.  I realize this is the combination of the disease on my body as well as the medications I'm on, but it's still frustrating.  

With all of these, yes, they worsen when I'm experiencing a flare or in times of high stress.

So, what are some ways I've learned to cope?

• Regular eye exams.  It means I keep my prescription for my glasses and contacts up to date and ensures that my eyes are still healthy.  (This is especially important since I've recently started on a "Disease Modifying Medication" where my eyes could be negatively impacted.)
• For hearing, I try to avoid situations where there's a great deal of noise.  I've also become more open with telling people, "I need you to look at me when you speak" or "I'm sorry; can you repeat what you've said?"
• For touch, I'm fairly open and speak up when it's more of an issue to me.  And my husband understands that it's not personal; I'm just having a rough day.
• Regarding my hair, I've learned to work with hair dressers that "get it."  Many of them have worked with thinning hair, even if they're not familiar with the conditions that I'm dealing with.  Their job is to make me look and feel my best (and least, when it comes to my hair).
• And for all of it, it's important to manage stress.  Keep watching here for an upcoming blog on managing stress when you have an Autoimmune condition.  

Definitions of medical conditions listed in my medical chart

"Med Seeking Behavior" and chronic pain (Or how can I prove to you that my pain is real when I have an Invisible Illness?)

We were watching the show "Night Shift" the other evening, and there was a scene where a patient comes in with obvious pain.  It appears she had kidney stones (to which I can attest is extremely painful), and the inexperienced medical professional on her case diagnosed kidney stones based on the tests, including blood in her urine.  Turns out the patient was a frequent flier to the ER and nicked her finger so she could put blood in her urine, and her chart documented a long history of med seeking behavior, specifically trying to get narcotic pain medications.

Now, med seeking behavior is a major problem for the heath care system today.  I won't deny that. And while the "typical" drug seekers shown on the media and in television shows usually show addicts in a fairly dramatic fashion, the truth is that health care sees med seeking behavior in a variety of ways, including individuals complaining of pain caused by invisible illnesses. And those individuals may truly experience the levels of pain that they're reporting--or they may not.  But it does make it harder for those of us who are truly in pain and need certain medications for treatment to receive the treatment we need.

So while society tells us "But you don't look sick" and many don't believe us, health care can share the same opinion.  And I can't blame health care for being cynical.  Prescription drug abuse is on the rise, and the FDA has changed their rules about prescribing Hydrocodone as a way to partially address this issue.  There are reports on the Office of Inspector General website of doctors being arrested for inappropriately prescribing Schedule II drugs and fraudulently billing for them.  Add in the news of increases of death due to accidental overdose of prescription pain medications, and it's understandable that medical professionals are cautious.

But there's very much a flip side to the story.  Those changes have led chronic pain warriors who rely on those medications to function to have great difficulty in getting the meds.  The cynicism of health care professionals to those with invisible illnesses who rely on those medications has led to people not getting what they need for treatment.  And this isn't the entire health care profession--there are many out there who acknowledge that there is a proper place for narcotic pain medication and work with patients on appropriate pain management.  

I've had experiences that run the gamut in the 20+ years of living with chronic pain.  The first time I was ever given a Narcotic pain med, I was about 20 years old at the time, and I was in the ER with pleurisy.  For those who aren't familiar with the condition, it felt like an elephant that was sitting on my chest and trying to crack my ribs with every breath, every attempt at talking, or every attempt at moving just a little.  It was extremely painful.  (Funny story: to say that I'm somewhat sensitive to pain medication is an understatement.  Shortly after the administration of the drug, I had the sudden urge to sing Disney tunes.  I must have said this aloud, because the nurse turned to my mom, who was with me, and said "Perhaps she only needs half of the pill.")

My primary care at the time was fairly wiling to work with the Fibromyalgia and Myofascial Pain Complex, but he also was quick to prescribe the pain pill I tolerated so well with pleurisy as a PRN ("to take as needed") for me to deal with pain.  This wasn't something I had requested, but it was something that worked quickly to deal with severe pain and would allow me to get back in track in maintaining my health.  

Over the years, it became a staple in my care.  For doctors looking at my history, they saw how frequently the PRN pain meds would expire before I even needed them (which shows how often I utilized them), and I've always been pretty vocal that I prefer other ways of dealing with my pain spikes if I can.  I can honestly say I've never had one of my (many) primary care physicians treat me as if I were med-seeking.

I can't say the same for some of the specialists I've seen.  And I really can't say the same for trips to the ER.  I once had a very nice and sympathetic ER nurse tell me to be careful sharing that I was diagnosed with Fibromyalgia with ER staff, because many of them will view me as doing nothing but med seeking.  

I will admit; I did go to the ER med seeking once.  (Well, actually, it was a total of 5 times in a week.)  I had kidney stones.  At that point, I would have stood on my head and whistled "Dixie" if they could take away my pain.  (And, in normal circumstances, I can't do either.) Generally, though, if I'm at the ER for pain, it's because I'm concerned there is something really wrong going on in my body.

I have some recommendations regarding this:

• Develop a strong rapport with your primary care doctor, and be open to other forms of treatment besides Narcotics.  Some medical groups have acknowledged the vast problem of chronic pain, and have started pain management practices that focus on a variety of ways to help alleviate pain.
• Educate yourself.  Work on finding what works for you to control pain that may not include the pain meds.  There are reasons I don't like Narcotic pain meds. They don't completely take away the pain and leave me feeling fatigued and sluggish for a few days after (on top of my already present fatigue), but the digestive issues?  Don't get me started on those.  And frankly, overuse of them can lead to dependency on the medication and potentially damage to organs.  That's why I use it as a last resort.  Is there a place for them?  Absolutely.  Do I still have my PRN prescription in the medicine cabinet?  Absolutely.  Do I still opt for time in the pool and acupuncture before I reach for them, when I can?  Absolutely.  
• If you have to seek out emergency care for pain, be open and honest.  Despite the recommendation from that ER nurse, I don't hide my diagnoses.  And yes, I have been treated poorly in the ER at times.  (And then I've filed complaints and requested that the staff receive additional training on chronic pain and invisible illnesses.)  But if you hide something, it'll appear you're hiding something, and staff are going to jump to the worst conclusions.  
• And if you seek out emergency care for pain, and they determine that your pain would be better responsive to an injected anti-inflammatory rather than a narcotic, don't argue with them (unless you know you have a contraindication for the anti-inflammatory).  Arguing with them isn't going to help your case and WILL make you look like you're med seeking.  After all, the purpose here is to help manage your pain, not to get you higher than a kite while doing so.  

Definitions of conditions listed in my medical chart

Mental Health and Chronic Pain (or No matter how much you try, you can't separate one from the other.)

Mental illness is still a somewhat taboo subject, despite the fact that 1 in 5 Americans experiences mental illness in a given year and 1 in 20 experiences a serious mental illness (one that substantially limits the ability to function in life.)  For more information on these statistics, check out the National Alliance on Mental Illness. 

Individuals dealing with chronic pain/invisible illness are at a higher risk of being depressed/anxious, and yet it's the double whammy of stigma.  Furthermore, so much of medicine still wants to separate the "physical illness" from the "mental illness".  We're a whole person, and yet our treatment is silo-ed.  And this doesn't work in the long run.  

And those living with chronic pain/invisible illness frequently get "accused" of being depressed.  My response to that?

Of course I am. I have to live in a body where my mind is sharp and wants to do all sorts of things, but my body says "Nope." I don't sleep, so my body never gets a chance to heal, and I never get a chance to get all those good benefits of sleep, so yes, my mood is poor. My disease keeps me isolated at times.  

While Lupus/RA can be fatal because of what kind of damage they can do the body, Fibromyalgia is not.  And yet, there is a number one cause of death to those individuals who are diagnosed with Fibromyalgia:  suicide.

So, how do we keep someone from being a statistic?  First, we need to realize that a person experiencing chronic pain/invisible illness is a whole person.  Yes, they have pain, but there is so much more than just pain.  That pain is affecting how they live their life.  That pain could be impacting their loved ones around them.  

To start, a disclosure:  I'm a therapist, so I'm pretty big on the whole "everyone can benefit from counseling in some way" thing.  I've worked with couples, families, and individuals of all age groups, from those individuals who just needed a little extra assistance to the Seriously and Persistently Mentally Ill.  My "go-to" modality tends to be Brief Solution Focused Therapy with a little Cognitive Behavioral Therapy thrown in, but I'm also trained in some other modalities and have experience in working to help address trauma.  

That said, I truly believe that anyone diagnosed with chronic pain/invisible illness can benefit from some mental health support.  Therapists can assist in processing the trauma of being diagnosed and living with chronic illness, can assist in being a sounding board for processing thoughts and feelings, can teach coping and relaxation skills, can provide couples and family counseling, and can just generally be one more person in your corner for support.

But not all therapists are going to be right for all people or all conditions. Just like finding a primary care doctor or specialist who will work with you, it can be a process to find a therapist that fits with you, so here are some helpful hints:

• Define your preferences for a practitioner.  Would you rather work with a male or female (or is this not an issue for you)?  Where would you like to receive your services (office?  maybe via phone?  online?)  Some of this will likely be limited by insurance or your ability to pay out of pocket, but insurance companies are required to provide the same level of coverage for mental health as they as physical healthcare.  
• Ask questions of the potential therapist.  What is their background?  In what are they experienced?  Are they familiar with the condition you're dealing with (or are they willing to learn about the condition)?  
• Just a side note here.  Do not be concerned if the therapist starts asking you questions about your condition or your experience with the condition after indication that they're familiar with it.  Everyone experiences things differently and what could be a very problematic experience to one person may not be that problematic for another.  Even if I have another chronic pain warrior sitting across from me as a client, I will still ask them what they are experiencing, how that experience is for them, and what they hope to gain from counseling. That's how client centered therapy works--we start where the client is at that moment and move from there.
• Define why you are seeking mental health treatment.  Are you looking for ways to cope or manage pain better (without additional medication intervention)? Are you looking for ways to process your feelings about your condition?  Are you looking for couples counseling so that you and your spouse can receive help around this issue? Defining what you hope to gain will help you find an appropriate therapist who utilizes an appropriate type of treatment to assist you.
• Educate yourself on different treatment modalities. There are probably hundreds, if not thousands of different types of treatment modalities that exist. Some, like Brief Solution Focused Therapy, is more of a problem solving intervention that is very short term.  Cognitive Behavioral Therapy can also be short term, and it focuses on changing thoughts and behavior.  There are some specialty treatment out there that focuses on trauma (and some are said to be beneficial for pain management), such as Eye Movement Desensitization and Reprocessing Therapy (EMDR).  There are even treatments that utilize art therapy and art therapy techniques.  Not everyone is going to be comfortable receiving all types of therapeutic treatments, and if you're not comfortable with it, it's not going to work for you.
• Understand that therapy is work.  Frankly, if you're not willing to do the work, no therapist or modality out there will likely work for you.  But the work should be balanced.
• Be open and honest with your therapist. They can only help you if they have all of the information. In addition, if something they suggest feels like something you aren't going to do, tell them. They're working to help you, and so giving lip service to something only hurts yourself in the long run.

If you or someone you love is experiencing suicidal thoughts, please ask for help.  The National Suicide Prevention Lifeline can be reached at (800) 273-8255.  

For those interested in online therapy with me, my online office can be accessed here.

Definitions of conditions listed in my medical chart.

What can set a flare in motion? (Or why I HATE Daylight Savings Time.)

Flares are times at which the symptoms of Autoimmune Disease/Chronic Pain conditions are at their most acute and severe.  Flares can be short term (few days) or can last long term. They can happen for unpredictable reasons, but a Chronic Pain Warrior learns that are certain things that can set flares in motion for them (and it can differ from person to person.)

For me, there are things that I know can start a flare.  Stress, emotional overexertion, physical overexertion, changes to my sleep habits, medication changes, allergies, if I'm fighting off an illness (or sick with an illness such as a cold or the flu), or a multitude of other factors.  There are many that I've learned to avoid or to mitigate their impact, but there is one change in my environment that seems to get me every time.

Time changes.  Daylight savings time changes are probably my least two favorite days of the year, consistently, because I'll feel the impact of those changes for at least a week. Unfortunately, I can't avoid the flare, but I've learned a few tricks to mitigate it:

• Avoid trigger foods like sugar, caffeine, and alcohol.  I tend to avoid those foods anyway, but I seem to crave sugar and caffeine when I'm flaring.  (They provide quick energy, but I pay for it later.)  
• Try to drink plenty of water and stay hydrated.
• Eat regular meals.  (Don't skip meals! This can cause even more problems.  As a tip, many grocery stores are now offering prepackaged meals that are easy to throw in the microwave or oven and don't require too much thought, planning, or work.  Keeping a few of these around while flaring can allow you to focus on recovery while still getting a nutritional meal.)
• Rest when needed.  (Sleeping too much can also be a problem because it'll throw off sleep schedules, but allow yourself to rest.)
• Don't over-schedule/over-commit yourself.  Take a step back and focus on your self-care.
• Are there adjunctive therapies that help you?  For me, those include the use of Essential Oils, massage, acupuncture/cupping, and meditation.
• Gentle yoga (keyword gentle) and stretching can be helpful.  
• Do you have an activity that you enjoy that doesn't require a lot of output? Maybe it's reading a good novel, watching a funny movie, or sitting outside enjoying the sunshine. Spend time doing something that you find enjoyable and relaxing.

Personal Note:  I've found great Essential Oils through a company called Ravenscroft Escentials (link here).  Ginger and Charlie are amazing, extremely knowledgeable and helpful, and their "Fibro Rub" oil has helped me immensely.  

Definitions of medical conditions listed in my medical chart

Getting the Lupus/RA Diagnosis (or I KNEW something else was going on!)

About a year ago, I received the diagnoses of Lupus and Rheumatoid Arthritis.  It took awhile to get there, though.

I know I've mentioned in previous blog posts that my blood work didn't show anything wrong, but that's not entirely accurate.  At the time of my Fibromyalgia diagnosis, there was nothing of note in my blood work, but there have been some funky issues in my blood work over the recent years.  But there were no major red flags until my medical team started doing investigative work into my history and started ordering the "non-standard" blood tests.  So, again, I found myself going from doctor to doctor, having so much blood taken I started to joke that they should just put a port in, over the course of about 2 years.  

The appointment where I finally received the diagnoses?  It took ten minutes with a new Rheumatologist who looked at my file and said "I'm adding the diagnosis of 'Unspecified Autoimmune Disease' to your file, but you have Lupus and RA.  And you have to start on this medication today."

On one hand, I didn't want more diagnoses.  I certainly didn't want additional medications. But on the other, I was right.  Even though the symptoms for Fibromyalgia, Lupus, and RA are similar experiences in the body, I knew there was something that was dangerous in my body.  Fibromyalgia makes life miserable as hell, but it doesn't cause damage to organs and joints.  Lupus and RA do. 

Lupus is a condition that can affect almost any part of the body, especially the skin, blood, joints, kidneys, heart, and brain.  Without proper treatment and management, Lupus can be fatal.  Rheumatoid Arthritis is a progressive autoimmune condition that mainly affects the joints, but also muscle weakness and swelling.  The damage to the joints can be debilitating. Disease modifying drugs, such as Plaquenil, can be a great first line defense for these conditions, but other common treatments include chemotherapy drugs.  

I don't share this information because I want pity or people to feel sorry for me.  I strongly believe that everyone has their own challenges to overcome, and these just happen to be mine.  I believe that I've been dealt these cards because I am strong enough to handle it and the natural advocate in me can advocate for individuals with invisible illness and can educate about invisible illness.  This will be a lifelong battle for me.   

Definitions of medical conditions listed in my medical chart

Guilt (or Choosing between being what society sees and taking care of myself)

There are a lot of emotions that go along with having Chronic Pain/Invisible Illness, but a predominant one is the feeling of guilt.  And the messages we receive from friends, family, significant others, employers, and society help perpetuate those feelings of guilt.

I'm going to be speaking from my perspective, and I have to admit that I'm making myself vulnerable with this blog.

There tends to be this societal view of invisible illness as "it doesn't exist because I can't see it."  And when someone is dealing with invisible illness and is unable to participate in activities or unable to work or needs a disabled placard, the default attitude of society tends to be that that person is malingering.  This attitude can come from the general population, family, friends, and even the medical community.  

From day 1 when my journey to a diagnosis began, I encountered that attitude.  The doctors would say "All your blood work is normal, so there's nothing really wrong with you.  You just need to see a psychiatrist."  (Remember, this was more than 20 years ago when mental health and physical health were seen as separate systems, and those professionals that chose to work with the mental health side of the medical field were met with the same stigma as individuals with mental illness.  To this day, there continues to be a stigma associated with individuals with mental illness and those professionals who choose to work to help that population, but there is work to decrease the stigma.)  

Even after my diagnosis, doctors didn't believe me.  I was viewed as adverse to attending school and mentally ill.  As I became a young adult, I continued to encounter this attitude within the medical field, but I also encountered it with friends.  It wasn't uncommon for me to have a good day one day (and completely overdo it), and a bad day where I wasn't able to do anything the next.  "But you were fine yesterday," is a statement I've heard many a time.  

No.  I wasn't "fine" yesterday.  And the nature of these conditions means that they are unpredictable.  While there is a lot within my control (what I eat, my sleep hygiene, taking my medication and supplements, etc), there is a lot not within my control.  Something as simple as weather changes or fighting off an illness can throw me into a flare.  Stress is a huge factor in managing these conditions--the higher my stress level is, the more challenges I'll have.

Unfortunately, the unpredictable nature of Autoimmune Disease/Chronic Pain means that there are times I have to cancel plans at the last minute with friends or call in sick to work. It means that there are days where I do very well and appear very "normal" while the next I'm not able to walk.  Or breathe.  Or I'm screaming in pain.  Or I collapse in the shower because of fatigue and overheating.  Few people get to see me on the days I'm struggling.  

The thing is that I want to spend time with friends.  If I make plans with someone, it's because I wanted to make those plans with them.  I want to work.  I don't call in just because I want to play hooky.  And when I have to cancel something or miss out on something, I feel guilty.  I hate letting people down.  

A number of years ago, I had made plans with a coworker/friend to do something on a day off, but when the day came, I woke up running a pretty good fever and feeling like I had been run over by a truck.  I was no where near safe to drive, and so with regrets, I called to cancel plans with this person.  

Her response?  "I wish you had let me know you didn't want to get together sooner.  I could have made plans with someone else."

I was frustrated that a supposed friend couldn't see how much I was struggling.  But I felt the hit of guilt that I had to cancel.  

I also hate asking for help, and I frequently have to rely on my husband.  There are times I feel like a burden to him.  I have to ask for a lot of help, but there are definitely times that I'm not able to contribute much.  I feel guilty because I feel like such a burden.  

I should add that I have amazing friends and an amazing husband, all who assure me regularly that I'm not a burden.  An example of the awesomeness of one of my friends is when I broke my foot.  She came over to visit and cleaned my kitchen for me.  (And she knew me well enough to move my crutches out of my reach before she started cleaning the kitchen.)  This is also the same friend who will check in with me when we're out to make sure I'm not pushing it to the point where I'm not safe to drive home.  I can let the mask down around her.

But the guilt comes in other forms.  Use a disabled placard to park in a disabled designated spot, but don't use anything to help you walk?  People look at you as if you don't really need the spot.  (Some will even make comments.)  The mind starts up with "am I taking this spot away from someone who needs it?" and "could I walk a little further today?"  The fact is that on the days where I can walk or that I'm feeling good, I don't use the placard.  So when I use it, it's because I need it.  And yet, I'll still question myself.  Similar things happen with using the disabled stall in public restrooms, where (logically, I know) what happens in there is no one's business.  But the feelings of guilt make me want to broadcast to the world that I needed the bar on the wall to help me back to standing.

So often, society views individuals with invisible illness as lazy.  Again, logically, I know I'm not lazy.  I have a photography business, I create jewelry, I write, I have a private practice, I'm working on a third masters, I work full time, and I still try to fit in more stuff.  And yet, I feel guilty for taking a nap when I have a day off because it may mean that I'm lazy.  The truth is that I'm doing what I need to do to care for myself, and even at that, I'll let guilt propel me to push myself even more, and then I pay for it later.

I'd like to offer some sage advice on how to deal with feelings of guilt, but I'm still working on that myself.  What I will say is that your health is your priority, and you need to care for yourself first and foremost.



Definitions of medical conditions listed in my medical chart

Chemical Sensitivity (Or what do you do when your shampoo makes you break out in hives?)

About four years ago, I began having allergic reactions to my shampoo.  And shortly thereafter, I noticed that I was breaking out in rashes with my face cleanser and make-up. Then there was the allergic reaction to my deodorant (which was highly uncomfortable), and I noticed that I seemed to have increased sensitivity to my body wash.  Even my clothes seemed to cause a sort of allergic reaction.  I'd used the same brand of products for about 15 years, and the brand reported themselves to be natural with ingredients that shouldn't cause these sorts of problems.

But sure enough, I was experiencing sensitivity to something within the products I had been using for years and found myself standing in the aisles of Target wondering what would work for me.  Well, I found myself wondering what would work, but also worried of what else may cause these reactions. (I'm glad to say that I was eventually successful in finding new skincare, shampoo, body wash, make-up, deodorant, laundry detergent, and cleaning products, but I'm also very aware that this could change at any time.)

I, like many other individuals dealing with an Autoimmune Condition, have developed Multiple Chemical Sensitivity (MCS).  WebMD has a great technical description of this condition, but here's a definition from my point of view:  Intolerance to a variety of chemicals that can lead to allergic reactions within the body.

I won't bore you with the list of chemicals I cannot tolerate, but fragrance can be a major trigger for someone with MCS.  Strong perfumes or colognes are problematic items for me, because it can actually trigger breathing difficulties and severe nausea.  I once had to share a computer wrist rest of someone who wore strong colognes, and found myself breaking out in hives on my wrist.  I can't walk down the detergent aisle at the store because of the strong perfumes.  I can't wear clothes that have been bleached, nor can I be around areas where bleach has been used for cleaning purposes.  

Like Fibromyalgia and Lupus (or other Autoimmune Conditions), there isn't a definitive list of what chemicals to which a person with MCS will react to, nor is there a list of potential reactions, so what I may have sensitivities to others with MCS may not (or vice versa).  

It's easier to control the environmental factors within the home.  For instance, in our household, we've found a line of house cleaning products that both work well and don't lead me to have a negative reaction.  We're very clear with the individual who cleans our house for us that it's necessary for her to use those cleaners, as well as why.  

In our home life, we have run into some challenges with MCS. My husband and I are both artists and many creative endeavors require chemicals that aren't so great.  I refuse to give up those creative outlets, and so I've had to figure out workarounds where I can.  The big challenges come while being out in the world.  

Ever have the experience of stepping into an elevator with someone who's wearing very strong perfume?  For a "normal" person, it's an uncomfortable experience, but for someone with MCS, it can feel like being choked.  So you can imagine being stuck on a plane or working in an office where strong fragrances exist.  

So, if you're sensitive to chemicals, what are some ways to deal?

• If you're working outside of the home, advocate for a fragrance-free workplace. You might be surprised how many of your coworkers will thank you for it. Chemical Sensitivity is also recognized as as a disability by the Americans with Disabilities Act.  (Learn your rights under the ADA.)
• Read labels.  Learn about what products you're using on and in your body.  Learn about the products you use to clean your home.  Not all "natural" products are natural (labeling can be misleading), so do some research.
• Remember if you have an Autoimmune Condition, you're more likely to develop additional Autoimmune Conditions and/or Chemical Sensitivity.  Talk to you medical team and other trusted professionals on how best to address these issues for you.

Definitions of medical conditions listed in my medical chart