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

Fatigue and Autoimmune Disease (Or When did I have these lead bricks attached to my extremities?)

I've been meaning to write the post on fatigue for awhile, but I've been way too tired to compose my thoughts.

(And I wish I were joking when I say that.)

The fatigue of conditions like Fibromyalgia, Lupus, R/A, Chronic Fatigue Syndrome (now known as "Systemic Exertion Intolerance Disease"), and other Autoimmune Conditions (or conditions that mimic autoimmunity) isn't just a feeling of being tired.  It's not something that can be resolved with a nap or a good night's sleep.

The fatigue--much like the pain--is always there.  There are days when it may be "fatigue lite" and the fatigue isn't so bad, but there are also days when it can be extremely debilitating.  Each person experiences their fatigue differently, and just like the pain, it can be unpredictable.

I recently read something that stated it takes a person with Fibromyalgia 5 times more energy to complete a simple task than someone who does not have Fibromyalgia.  I'm not sure if that's true--or if it's simply a matter that it requires so much more of the little energy we have combined with the lack of physical ability and/or cognitive ability due to the fatigue--but it highlights a point that the fatigue of these conditions is one of the biggest challenges to living with them.

The fatigue impacts everything.  Simple, everyday activities are made just that much harder by fatigue.  And if it's a really bad fatigue day, those activities may be impossible for the person to perform.  For me, I can handle the pain relatively easy, but the fatigue--particularly if it's a severe fatigue day--is what will completely do me in.

The fact is that fatigue is a major part of conditions like these.  Chronic pain fatigues the body.  The assault that our bodies go through from the autoimmune conditions fatigues us. To those who don't experience life with chronic pain/invisible illness, it can be difficult to fathom how the fatigue can feel.

Fatigue isn't fun, but there are a few things that I've learned over the years that can help with it:

• Regular light exercise.  Look for an upcoming post on this topic, but in short, activities that get your blood pumping like walking or aqua aerobics can be great.  
• Practice good sleep hygiene.  This will also be an upcoming blog topic, but you want to try to keep your sleep schedule as regular as possible. A few tips now? Avoid television and electronic devices before going to bed, avoid exercise right before bed, and keep the same schedule for sleeping (i.e.- go to bed at ten every night, wake up at 6 every morning).
• Spend time outside.  Time spent in sunshine, fresh air, and nature has been shown to improve mood, decrease anxiety, and gives you Vitamin D.
• Avoid caffeine and sugar. Yes, it can be a quick boost in the moment, and even I've been guilty of using these trying to get through the day, but while they provide a quick boost, the crash tends to be harder and meaner.
• Get rest when you need to.  One of the biggest challenges with any of these conditions is difficulty falling asleep and staying asleep, and so "rest" doesn't necessarily mean "sleep".  It can mean just sitting with your legs up for a half hour or doing something mindless, like watching a funny movie.
• Manage activities.  "No" is a very important (and underused) word.  No one can do it all, and in order to focus on your health, you'll need to prioritize activites and you'll likely have to turn down activities.  And that's okay.
• Manage stress.  This corresponds to "manage activities", but developing coping skills to manage other stressors is also extremely helpful.  
• Get creative.  Television can be a great way to escape for a little while, but it can also be an easy way to suddenly realize you haven't moved in 8 hours. Doing something that may not be active, but that can engage the mind a little, can be a good thing.  For instance, I enjoy knitting. If my hands are really bad that day, but if I can hold a pencil, I'll color mandalas.  
• Meditation.  Meditation can be extremely relaxing and healing.  This doesn't mean you have to find a cushion to sit on and chant "Om" for hours on end. (Although, if that's your preferred style of meditation, go for it.)  Guided imagery can be a great tool, and there are several meditation aps on the market today (I love Simply Being.).  Another great tool is restorative yoga or Yoga Nidra.  The more you practice meditative techniques, the better you'll get at it.
• And most of all, Be Gentle With Yourself.  Beating yourself up won't help you feel better and it certainly won't help the fatigue.  

Definitions of Conditions Listed in my Medical Chart

Minimization of symptoms (Or "Yes, I realize I'm gritting my teeth, but it doesn't hurt that bad.")

A few weeks ago, I had my monthly acupuncture/cupping appointment. Acupuncture/cupping is a regular part of my treatment plan, but it's not always the most pleasant experience.

(Information on Acupuncture and Cupping therapies.)

Don't get me wrong; my acupuncturist is amazing and I always enjoy seeing him.  But the cupping treatments can be painful at times.

At this last appointment, he hit a particularly tender area, and asked me if it hurt.  I made some non-committal comment about it, minimizing the fact that it really had hurt, and realized I did that with a great deal of frequency.  I'm quick to say "Oh, it's just a tender spot" when it fact it hurts like hell. And I tried to figure out why, when I was in a place with someone who'd worked with me for years and helped me with my worst pain, I was trying to minimize it.

The fact is that many people with chronic pain/invisible illness minimize their symptoms, even to their medical team.  There could be a number of reasons for this from the lack of supportive response from society, family, friends, medical community, and others when we try to discuss our symptoms to not wanting to be seen as "complainers".  Unfortunately, it's this continual minimization that hurts our overall care with our medical team (they can't treat us appropriately if they really don't know what's going on with us) and it gives society the impression of "Oh, it's really not that serious."

Let's face it.  The average person who asks "How are you?" doesn't truly want to know the answer to that question.  (Many who ask that question don't even want an answer at all.)  Do I tell anyone who asks how I am, how I truly am?  Absolutely not.

But to the people close to me, I do them and myself a disservice if I don't speak up about how I'm truly feeling.  I strongly believe that one of the reasons I developed these conditions was to educate about them and advocate for all of us dealing with them.  I don't complain incessantly, but I am honest if I'm having a bad day.

With my medical care, I need to be as honest and direct with my medical team, otherwise they can't help me effectively.

There are a few things that can help with this:

• Apps (like the WebMD Pain Coach App) can help track pain and keep a record of it.  With these sorts of tools, I recommend discussing the results with your doctor.  These tools are always best used in conjunction with an approved plan for treatment that works for you and your medical team.  There are other apps out there that can also track other symptoms associated with these conditions.
• If you don't have a smart phone or tablet, grab a notebook and journal.  Start small, but you can jot down notes about your pain level, fatigue level, and possible triggers.  Using Apps or Journals can help you give your doctor an accurate description of your symptoms (and may help you identify triggers).
• With major emergencies--extreme pain, bleeding, or other items that require immediate attention--seek out emergency care immediately.  But if something comes up for you that's a question or comment that could impact your care or provide more information to your doc--that isn't emergent--leave them a message. Many medical systems now offer the ability for patients to email their doctor in a secure system for non-emergent questions.  (And since my memory isn't always the greatest, I can drop her a line while I'm thinking about it at 3 o'clock in the morning rather than risking forgetting it.)
• Before medical appointments, particularly appointments where you may have a lot of questions, write them down.  Brainstorm with your loved ones prior to the appointment.  There is no such thing as a stupid question when it comes to your care!  So, bring a list with you.

So...how are you doing today?

Definitions of conditions listed in my medical chart