Chronic Pain and Suicide Risk (Or why aren't we addressing such the need for help in such a high risk group?)

I recently had a doc say to me "Fibromyalgia won't kill you."

I know this. I've dealt with this condition most of my life.

I shot back, "Yeah, I know. The other half of that statement is 'But it will make you wish you were dead.'."

Let's just say that particular doctor's visit didn't go well.

The reality is that there are many chronic pain conditions and illnesses that in themselves, are not deadly. That part is true. But the damage that these conditions cause to our lives, livelihoods, bodies, relationships, and even our daily interactions can and do place individuals with chronic pain and chronic illness at a higher risk for suicidality.

A recent article published by the American Chronic Pain Association (2016) reports that a recent survey they conducted showed that 47% of the respondents (chronic pain patients) have contemplated suicide. Given that 100 million Americans are living with chronic pain (according to the National Institute of Health), one would think that there would be more attention given to what is such a high risk group and such a large part of the population.

And frankly--even more concerning--is that the recent push from the CDC and other federal entities to limit the access of opiate pain medication has had an increasing negative impact on suicide rates. In short, since chronic pain warriors are having more difficult accessing the medication they need to control their pain, the suicide rate among this population is rising (Pain News Network, 2016).

Why are Chronic Pain Warriors at higher risk for Depression/Anxiety?

There are a number of factors that can contribute to depression and anxiety, including not enough sleep (or enough restful sleep), isolation, not getting enough Vitamin D, some health conditions, a chemical predisposition to mental health challenges, and many others.  For instance, if someone with Fibromyalgia has sleep disturbances, this is not only going to cause an increase in the level of pain, but it's likely to impact the person's ability to interact with the outside world (leading to increased isolation), and may start a cycle of poor sleep due to pain leading to more poor sleep and so on.

And then, there is the stigma. This comes from everywhere. It's in the judgement of every person who watches me get out of the car when I have to use an accessible space to the coworkers who wonder why I called in sick to the doctors who tell me I shouldn't feel this bad (when they themselves can't begin to fathom what I feel). It's from well meaning but misdirected individuals who offer the "cure" their brother's second wife's cousin is selling this week for all conditions. Maybe we have family and friends that we feel we're asking too much of or have become a burden to.The stigma is isolating as well.

And, of course, there is stigma in reaching out for help with mental health. There are the lack of resources for individuals reaching out for mental health. In addition, while there is an increasing understanding of the impact of chronic pain and illness on mental health, this is still a growing movement, so the professionals who are competent in chronic pain tend to be scarce.

How do we address this?

The good news is that there is a growing trend (Thanks Medicare!) to have patients of all backgrounds complete a Patient Health Questionnaire (PHQ) when they see their PCP. The PHQ is a screening tool for depression, and it also screens for suicidality. This can be a very useful tool, and since Medicare implemented requirements for screening tools to be utilized as a part of patient care, other insurance companies are noticing and following suit.

Social media has also been a great place for chronic pain warriors to find support from fellow chronic pain warriors, and some areas have in-person support groups. These can be great resources.

Ultimately, though, care for people like me has to be holistic and address my mental health needs as well as my physical health needs. This means all of the systems of the healthcare system need to come together to treat Chronic Pain Warriors as the whole person that they are (chronic pain and all). It requires an approach that is common sense in many ways, but is rarely put into practice: treat the whole person, not just the problem area.

And finally, medicine and the CDC need to realize that there is an appropriate place for opiate pain medications in chronic pain management. It's not necessarily the whole treatment plan, but it can be part of a comprehensive treatment plan, and for many people, it's a necessary part of treatment. It may be the only thing keeping someone going on with the fight against their pain.

If you or someone you know are experiencing suicidal thoughts, get help. The National Suicide Prevention Lifeline can be reached by calling 1-800-273-8255 or visit their site for live chat.

Supportive Animals (Or, the Blog Post Where I Get to Brag About My Amazing Dog)

About two and a half years ago, my husband and I went to the local shelter "just to see" the dogs. (I really should know better.  I'm the type of person who would take all of the dogs home if I could.)

During this time, I had really been struggling with health issues. My depression had hit an all time low, and physically, things were going downhill for me and the doctors couldn't figure out what was going on. (This was shortly before I received the additional diagnoses of Lupus and RA.)

While we were at the shelter, we came across this shaggy, mid size (about 50 lbs) collie mix, named Wilson who I connected with immediately. We asked about him, and the volunteer provided what little information was known about him, and asked if we'd like to play with him outside. The shelter had these great fenced play areas with picnic tables, and so I sat at the picnic table and got to know Wilson a bit better.

He approached me cautiously, not out of fear, but almost concern before turning and sitting on my foot, leaning his head back in my lap for me to pet. This was extremely significant because of past dogs in my family's life who had done the same with my mom. It was as if those animals who'd crossed over the rainbow bridge were telling me this was my dog.

A few days later, we officially adopted Wilson into our home. Initially, we were going to be the type of pet parents that didn't allow him on the furniture or feed him people food. (That didn't last long.) He was classified as an emotional support animal to help me cope with my depression and anxiety, but he seemed to sense how sick I was physically. Where he would play fully with my husband, tug on that toy harder, run faster, jump harder, he was gentle with me.

From the emotional and psychological standpoint, I call Wilson my Angel Dog. He's brought so much joy into our lives, made me laugh with his goofiness, comforted me when I'm having difficulties, and just bringing a sense of calm and peace.  But about a year ago, our very smart dog showed me how much he was clued into me.

I had had a really rough few days where I was essentially living off of pain pills and Glucerna. I spent the majority of the time sleeping and it was just me and Wilson at home.

About mid-morning, I was awakened by the feeling of being pushed by something. When I came to, I realized Wilson was laying next to me in bed pushing me with his paws to wake me up and he didn't stop pushing until I sat up on the edge of the bed. He then did his "I need to go outside" routine, and I stumbled through the house, heading toward the back door. But rather than go to the back door, Wilson stopped in front of the fridge, watched me for awhile, and then looked back at the fridge. It took me a minute, but I realized I was likely hypoglycemic. I grabbed a meal replacement shake out of the fridge, downed it, and only then would Wilson go outside.

I returned to bed for more sleep after he came back in, and a few hours later, found myself repeating a similar pattern. Again, he woke me up by pushing me, but this time it wasn't food he was after me to get, but water. And this time, he wouldn't let me go back to sleep forcing me to stay awake. (Which is actually a really good thing because otherwise I would not be sleeping at night.)

He has also helped keep me from having panic attacks, alerted me to low blood sugar episodes, and tried to warm my feet by laying on them when I'm having problems with Reynaud's. Wilson loves to snuggle...he just hasn't figured out that laying on top of me when I'm having a really high pain day is the way to go sometimes.  :)  Wilson tracks me at night, particularly if I'm having a really bad night, and will keep tabs on me. (The night after my most recent surgery he made things really interesting for me. Every time I got out of bed, he would move and lay on the floor so that I would have to step over him to return to bed. He made sure he knew where I was, but lifting legs over a dog after abdominal surgery isn't the most fun thing ever.)

I'm not bringing up this topic in my blog to just brag about how awesome my dog is, although he is pretty awesome. There are a lot of positives to pets in the lives of people, regardless of their ability or disability. But when you have a disability, there are also some considerations to take regarding animals.

So, Wilson provides a great deal of services to me. But Wilson, like any pet, requires a great deal of care and has his own needs. For some people with the types of illnesses that Chronic Pain Warriors deal with, the needs that a pet has are too great and are more of a responsibility than someone can handle.  That leads me to: what questions should one ask themselves when considering taking on a pet/emotional support animal/therapy animal/companion animal/service animal?

(There are a variety of differences between an animal that is a pet vs. emotional support animal vs. therapy animal vs. companion animal vs. service animal, and the laws that govern the type of animal and where they are allowed are far more detailed than I wish to get into in this blog. For people who are interested, I encourage you to look to the Americans with Disabilities Act and Regulations on Service Animals for further information.)

Questions to ask before taking on an animal

1. Why do I want this animal in my life?
  
Are you looking to adopt because you saw that Sarah McLachlan SPCA commercial one too many times or do you really feel ready to take on an animal with their needs? Have you researched the specific breeds/types of animals and temperaments?  If you adopt a puppy or kitten, are you aware of the increased care requirements you'll have for awhile? If this is a service animal, have you thought about the costs of training and education? These are all things to take into consideration.

2. Will this animal fit into my lifestyle?

Some Chronic Pain Warriors are still able to work full time, so is this animal going to be alone most of the day? If so, are they able to entertain themselves or will you return home to find things torn up? If you're fairly sedentary, adopting a high energy animal who requires lots of exercise probably isn't the way to go. Animals have personalities, too, so if you're a person who enjoys peace and quiet, bringing a barker home might not be the best way to go.

3. Can I afford this animal?

Vet bills, food, medication, treats, toys...it all adds up. And if your animal becomes chronically ill themselves or requires special food or medication? It can get even pricier.

4. On my bad days, will I be able to exercise/play with this animal as they need to be? (On my extremely bad days, it can be hard for me to let the dog out; is this something you would have to consider?)

5.  Is there support for me to turn to if I have to be hospitalized for a length of time because of my illness? 

Or even on those days where you suddenly find yourself stuck at the medical center for 13 hours, is there someone you can call who can help your animal out. I know Wilson can hold it for awhile, but a dog can only cross their legs for so long.

And ultimately, the question that needs to be answered is: Will this animal bring more joy and help to my life or will the animal cause too much of a burden on me to care for it in my present health state?

I can't imagine my life without Wilson in it, but I have the help of my husband for things like bathing him and making sure he gets enough exercise. Wilson is also calm enough of a dog that he doesn't require constant stimulus and while he has his hyper moments, that's not his constant state. He fits into this family perfectly.

I'm all for animals in our lives as I believe they bring great joy and value, but we owe it to those animals to bring joy and value to their lives as well.

A list of definitions from my medical chart.

Update (Or why I've disappeared for a while)

When I started this blog a bit over a year ago, I wanted to provide a glimpse of what it's like living with invisible illness.  Part of that meant educating on a variety of conditions.  I also wanted to make it a resource for others who were suffering.

But there's also the part where I have to be open about my experience and how my illnesses affect me.  And so, with some trepidation...

It's been a very rough few months for me.

I've been dealing with an increase in my pain fairly steadily over the past few months. It got to the point where I was having to take my PRN (as needed) Opioid pain medication nightly in order to sleep. In late February, after talking with my doctor, I decided to try a new medication that had been suggested to me over the past couple of years but I'd been hesitant to try.

Please note: nothing I say in this blog should be taken as medical advice. Please discuss any medications and medical concerns with appropriate medical professionals.

Naltrexone is an Opioid Antagonist used to help individuals who are addicted to Opioids to stop while helping their pain.  There has been some research that Low Dose Naltrexone (LDN) can be useful to help pain in individuals with Fibromyalgia.  The reported side effects are generally pretty minimal and well tolerated.

Well, by most, anyway.

Two days into taking the LDN, my pain had spiked significantly and I was experiencing other flare type symptoms. Four days into taking the medication, my depression and anxiety had started to significantly worsen. By day 5, I was incredibly labile and increasingly suicidal. On day 7, I woke up experiencing tactile and visual hallucinations. That was the point where I notified my doctor and stopped the medication.

I wish I could say the side effects immediately reversed upon stopping the medication, but even 2 1/2 months later, I am still struggling with the increase in both my depression and anxiety.  I began having almost nightly panic attacks that would keep me from sleeping and my suicidal ideations became very severe.  (My medication has been changed to include meds to address these issues, and over the last couple of weeks, things have started to improve mood-wise.)

Aside from the mood side effects, physically my pain and fatigue levels have been beyond ridiculous.(Shortly after stopping the LDN, I caught a nasty Upper Respiratory Infection that turned into Asthmatic Bronchitis that left me very ill for a month, so that hasn't exactly helped matters any.)

Currently, I am able to work...some.  It's exhausting. On days where I don't work, I sleep or rest the majority of the day. I've been slowly trying to incorporate other activities back into my life such as gardening, playing with the dog, spending time with friends, etc, but it's been slow going and adding those activities means that I'm recovering for the next day or two. Things that most people would not even think twice about require so much energy from me.

For instance, something that has become very taxing for me to do is talking on the phone. I already tend to avoid talking on the phone because of my hearing problems, but there is so much energy that is required to follow and track conversations in addition to struggling to hear, it wears me out too easily. There are a handful of people that I can comfortably talk to on the phone because they understand that I can only handle short conversations, but generally texting is best for me these days.

The cognitive challenges have definitely become more noticeable and frustrating. I'm not tracking conversations as easily and there just seems to be a fog over everything (thought-wise) that I've been fighting through. For someone who can usually multi-task and recite regulation from memory, it's beyond frustrating. I feel so stupid these days. I can't keep track of days or appointments, even with my reminders in place, and I'm not this flaky person. I don't want to be this flaky person.

I am fighting my way back, but it is slow going. My mood is slowing improving and I'm finding enjoyment in activities again. I'm finding my laughter again. I'm still exhausted and prone to severe anxiety attacks, but the medication is helping. It's a slow recovery, though.  Unfortunately, the combination of the slow recovery and lack of energy leading to isolation has made the mood recovery even slower.

Physically, there have been some new developments, and I'll be seeing several of my specialists this month to figure out the plan.  Not all of this is related to the attempt with the LDN; it just added to the situation to make it the perfect storm.

So, today, I'm going to focus on the time that I was able to spend with family, laughing at the goofy antics of our awesome dog, the beautiful plants growing in my garden, and the fact that I was able to give some very cool gifts to two very amazing women in my life.  It was a good day.

A list of definitions in my medical chart

Reality Bites (or How Invisible Illness Plays Out on "Reality Television")

So, I have a confession to make:  I enjoy watching reality television.

I know, I know.  It's not really based on reality and most would likely agree that it's not stellar television.  Part of the reason I enjoy it is that I love learning about people and getting into their lives. (Yes, that's the social worker in me.)  The other reason is it's generally pretty mindless, and quite frankly, I sometimes need to shut my brain off and watch some mindless television.

Years ago, I became sucked into the "Real Housewives" franchises (yes, multiple) on Bravo TV.  For the most part, the show has been a way to escape day-to-day drudgery and the homes and obviously different lifestyles were so far removed from my life that I couldn't relate.  I could watch without getting sucked in and it could stay mindless entertainment that I could laugh at (and sometimes, laugh at while rolling my eyes).

But I have to admit, the Real Housewives of Beverly Hills managed to suck me in in a different way. The last couple of seasons, one of the cast (Yolanda Foster) has been bravely coping and fighting Lyme Disease and the impact that it's had on her life has been featured on the show.  Chronic Lyme Disease can be debilitating, and it's changed her life in drastic ways (which she addresses on the show).  For the most part, her friends seemed to rally around her, and then...

Someone accuses her of having Munchhausen's Disease. Now, Munchhausen's is classified as a mental disorder where the individual makes themselves ill in order to gain the attention of medical professionals and others. (It's quite a bit more complicated than this explanation and is extremely rare.  In fact, there are some in the mental health field that deny that it exists and that all of the symptoms should be classified as Malingering.)  But, in reality, what this person was suggesting is something that everyone with Invisible Illness faces--"I don't believe you're sick."

One of the reasons this individual brought this up was because of the photos Ms. Foster posts on Instagram (which includes selfies of when she is ill and receiving treatments and alternatively, when she feels well and is able to enjoy her life).  I found myself yelling at the television as if I were watching a sporting match.

Here's the thing. Those of us living with Invisible Illness are sick. Some of us advocate and educate. Ms. Foster is brave enough to post photos of herself when she is ill and receiving treatment as a way to advocate and educate, and continues to be part of a cast on a reality show. I write a blog, train professionals how to work with individuals in the mental health field who are living with chronic pain, and provide mental health services to individuals with chronic pain. Others create memes and t-shirts to raise awareness.

But we are also people. We are people who have lives and enjoy having fun.  We do not always want to be sick.  We do not want to always live in the illness.  We want to be normal.  We have interests outside of advocating and educating and being ill.  On good days, we can even enjoy some of those interests.  It does not mean we are faking our illnesses.

A list of medical definitions in my medical chart.

Contraindications (Or My Meds Cause What Side Effects?)

Medicine in today's world is truly a wonderful thing.  Diseases that were once wiping out hundreds of people have been eradicated and viruses that were once considered a death sentence can now have their impact mitigated so that people can live normal lives.  Yes, science has come a long way and people are living longer, healthier lives.

Or longer, somewhat healthier lives.

Or, in some cases, longer, but not healthier lives.

Unfortunately, while there are many wonderful medical advancements in this world, many of these advancements come with some sort of downside.  It's a balancing game of outweighing the costs vs. benefits, and for the most part, taking the medicine or undergoing the procedure is of greater benefit than the risks of not taking the medicine or undergoing the procedure.  But while the overall benefits outweighs the risks, it doesn't mean that there aren't impacts of the medicine or the procedure that don't negatively impact the person.

Common complications of medications are side effects.  The fact is that each and every time a person puts something into their body, there is an impact.  Most of the times the impacts are good (or the positive impact outweighs the negative consequences).  For the most part, medicine would call side effects tolerable negative reactions to a treatment that helps treat/manage/cure a condition.  And--for the most part--they'd be right.

But those with chronic illness frequently tell the story as to how the side effects of some treatments outweighed the benefits of the medication.

The above meme is meant to be humorous, but unfortunately, there's quite a bit of truth behind it.

When I was first diagnosed with Fibromyalgia at the age of 15, I was provided with a prescription of Naproxen Sodium (which is now known as Aleve, and is available over the counter).  Nine months later, I underwent an Upper GI Series, they discovered an ulcer brought on by the medication, and that was the end of my experience with it.

The medication after that was Nortriptyline, a member of the class of Tricylcic Antidepressants.  It's an older drug, typically well tolerated, and this one lasted for a number of years.  Unfortunately, it stopped working.  I still haven't lost all the weight I gained while on it.

I can't do medications in the class of Selective Serotonin Reuptake Inhibitors (SSRIs), a class of antidepressants which contains Prozac, Effexor, Paxil, and others.  Unfortunately, I'm one of the people who experience an increase in suicidal thoughts while on those medications.  And yes, that sort of defeats the purpose.

I was on Gabapentin (Neurontin) for a while.  It's an anti-seizure medication which has also shown great impact on chronic pain conditions such as Fibromyalgia.  And yes, it helped the pain immensely.  It also negatively impacted my vision, and so no more Gabapentin for me.

My current medication list does contain medications that mitigates the side effects caused by other medications I take to control my conditions.  At this point in my life, my medication regime causes tolerable side effects.  I do recognize that there is a strong likelihood that that will change.  Either the side effects worsen or the medication stops working (or both), and then it's back to the drawing board to figure out how to manage things.

I also recognize that there may be a time in my life where I am on notoriously side effect ridden medications, such as chemo or Prednisone.  (I have been on Prednisone for short durations for asthma, and it's not fun.)

So how do I handle the issue?

• I'm up front with my medical team as to what side effects I find unacceptable and which side effects I'll tolerate.  
• I research the heck of out the medications/treatments that I'm on/undergoing and potential treatments.  I ask questions to the medical team.  If a new medication is suggested/recommended, I specifically ask "Are there any contraindications with my current medication list?"
• I track my side effects, particularly if I find them troublesome, to discuss with my medical team.
• And finally, as I've stated before in the blog, since it's my body, I make all final decisions.

Please do not take anything in this post as medical advice; this has been my own experience with particular medications, and you should discuss any medication concerns with your own medical team.

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

Pass on the Platitudes (Or, Please Do Not Tell Me to Get Well.)

There are a bunch of articles and memes out there that talk about what sorts of not-so-great things people say to those of us dealing with Chronic Pain/Invisible Illness.

But there's another category of things said that are meant to be helpful, usually come from well meaning friends, family, and acquaintances, but can tear us down just as much.  Here's a list of some of the most frustrating, but also, most common.

"Get Well Soon."

The conditions I have are chronic.  The damage that they've caused to my body is permanent.  I will have good days, but this isn't something that I'll recover from.  I'll never return to perfect health. There is no recovery from these conditions. There is no "getting well."
Statements like "Get Well" or "Get Well Soon" make me feel dismissed, as if either haven't been listening, don't believe me, or don't take me seriously.


"You Should Exercise More/Lose Weight/Eat a Certain Way [or fill in the blank with other helpful advice]."

First, anytime someone starts a sentence with "you should", my inner rebel (who I believe to be a 16 year old girl) laughs and says "make me."

Unless you're on my medical team and I've asked for your medical opinion and advice, I have no interest in what you think I should do with my health and body.  Your well-intentioned--but unsolicited--advice is not wanted.

If someone says something like this to me, I don't find it helpful.  I find it dismissing and in some cases, quite hurtful.


"My cousin's ex-girlfriend's brother's vet had that and tried XYZ treatment and is cured!"

I have to say that any approach that starts off listing a variety of family members or friends who have been "cured", it sounds like an urban legend, which takes away a lot of authenticity of the statement.

I've been going through this for a long time now and have run the gambit of treatments, both of the Western Medicine variety and the Eastern Medicine variety.  In the past, for a number of years, I successfully controlled my Fibromyalgia with diet, exercise, yoga, meditation, massage, and acupuncture.  Unfortunately, that is no longer an option, particularly since I now have conditions that must be controlled through medication otherwise I risk more damage to my body.

I can safely say that I have been on almost all medications that have been prescribed for Fibromyalgia at least at some point in my history.  The few that I have not been on have been because they're either contraindicated (I was on a medication in that class and it did not go well) or I refuse to go on it due to side effects (i.e.-Lyrica and the weight gain).

And there are people and organizations out there who attempt to profit off of people like me--those dealing with chronic pain/invisible illness and wanting some sort of relief from the pain and fatigue. Because of that, I'm pretty cautious these days about what I'll try.  So, I appreciate the advice, but please, save your breath.


"I Know How You Feel."

No.  You don't.  Even individuals who experience chronic pain cannot say that they know how another person experiencing chronic pain feels or what they're going through.  There may be certain circumstances you can relate to, but no two people experience these sorts of things in the same way.


"Just Think Positive."  "Think of All the Good You Have in Life."  "Think About What You're Grateful For."

These statements are so dismissive to someone going through a rough time.  Is it a good thing to look at things positively?  Sure.  But there are times in everyone's life when someone just needs to vent or needs support.  By saying these things, not only have you not offered support, but you've also dismissed what they're experiencing as something that's not important to you.  And since these conditions can start to encompass the entire being, you've just managed to say to them that they're not important to you.


"Other People Have it Worse than You."

Yes.  There are other people in the world who have it harder than me.  I acknowledge this.  It's one of the reasons I advocate for individuals living with Chronic Pain/Invisible Illness.  It's also why (in my professional life) I've chosen to work with and advocate for individuals experiencing Serious and Persistent Mental Illness.

But this statement is so hurtful and dismissive.  Imagine you've just gone through the worst day of your life, and a loved one says this to you upon you venting about it.  Doesn't feel so great, does it?


Helpful Things to Say
If you want to offer support, try these:

"I believe you."
"I'm here for you."
"How are you?"
"How can I help you?"
"Would you like to talk about it?"
"Thank you for talking to me about this."


A link to the definitions of conditions listed in my medical chart

Personal Costs (Or The Costs of Having to Let Go of Dreams)

At the age of 15-when I was diagnosed with Fibromyalgia- I had dreams of going to Saint Louis University as a pre-med student and then following that up with a stint at Saint Louis University Medical School.  My ultimate goal was to either be a surgeon or an ER doc.

I made it to Saint Louis U and started out as pre-med.  At that time, I really didn't like how managed care was progressing and wanted to be able to help people, but do it without insurance companies dictating my treatment plans, and so I switched to Social Work.  (The irony of this is that I ended up as the "red tape" in a managed care organization-a publicly funded managed care organization-for a number of years.)  But I made a conscious decision to change my major and focus of my education, and while there are definitely times I wished I had stayed the path into medicine, I'm mostly happy with the career path I've chosen.

I want to emphasize that I chose those changes.

I've worked in a variety of fields under the social work umbrella, but my primary focus has been mental health.  I've got experience working with kids and adolescents, adults, families, foster care, adoption, trauma, serious mental illness, and a variety of other areas, but one of my biggest areas of expertise is that of mental health policy.  I worked in Quality Management and Compliance for a number of years, chairing meetings, consulting with county and state personnel, and just generally making a pretty good name for myself throughout the state for my knowledge and participation in the policy arena.  I was one of the best in the field.  I was on track to become a Mental Health Director one day.

But then my health had other ideas in mind.  I went from being a non-stop one woman show (because of the way the county I worked for was structured, I ended up with a lot of oversight responsibility) to barely being able to get out of bed most days in a matter of a couple of years.

Bye-bye dream of being a Mental Health Director.
Bye-bye to being a force to reckon with in the policy arena.
Bye-bye to my good reputation.
Bye-bye to my working full time.
Bye-bye to a solid retirement plan.

Please don't get me wrong.  I love what I am doing now.  I am still in mental health, working as a clinical director, and getting to do a lot of things I really enjoy like training and clinical supervision. I couldn't ask for a better group of people to work with.  But I am not working full time.  (I am also building a private practice.)  And I would have liked to been able to choose this path in a way that didn't damage my reputation or my financial stability.

What other things have these conditions cost me?

I don't have the energy to spend as much time as I'd like with friends and family.
I don't have the energy/lack of pain/hand strength to enjoy being out with my camera as I once did.
I don't have financial security.
Because of the financial changes and the amount of debt, I worry constantly (and the added stress isn't helpful for any of the conditions).
New cars, new clothes, fun trips--those things that many seem to take for granted fall way down the list when it comes to buying things.

And for the people who say things about individuals with invisible illness not wanting to work?  I've generally found those with invisible illness tend to be an overachieving sort of people until our bodies give out on us.

A link to the definitions listed in my medical chart