You need a lot of energy to be sick.

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Another stereotype or stigma that I’d like to debunk right now is that people living with disability or chronic illness are lazy.  That they have SO much free time and can “do whatever they want” because they are unemployed.  We’ve all heard versions of this abelist stereotype.

It’s just not true.  People living with chronic health issues are as varied and different as people who are well, healthy, neurotypical or able bodied.  They are not lazy.  Being disabled is not a lifestyle choice.  Some people with disabilities are able work/volunteer/attend school and some are not.  Some have varying abilities depending on symptoms on different days.  Some people (like me) are “high functioning” (I HATE this term) and work full time, parent, take care of a house all while living with a high level of chronic pain and various chronic symptoms of mental illness.

But whether you are working or not, raising kids or not, volunteering or not, on social assistance or disability payments or not…I can say with 100% certain that being chronically ill is a lot of work.  I’d even say that it’s a full time job.  So we aren’t lazy, we are warriors.   Our work just isn’t valued by society, and a lot of it is invisible labor just to survive.

Please don’t perpetuate this stigma.  And please trust that each individual person knows what they can and cannot do.  If someone with a chronic illness is not working/volunteering/attending school it’s probably because their symptoms are too severe and they are not currently able.  Or maybe their workplace/school is not accessible for someone with their particular health issue.

It’s NOT because they a) don’t want to, b) aren’t trying hard enough, or c) are lazy.

Tonight, I have almost no spoons.  I drifted through the day, feeling foggy and having trouble concentrating.  I crashed on the couch and struggled to get up again.  I feel mentally and physically exhausted.   I didn’t run a marathon today, I didn’t work out…but I DID expend a great deal of energy coping with my health.

Before work I had a doctors appointment.  It was a new doctor, so there was stress and anxiety last night and this morning.  I got test results that weren’t what I was hoping.  I got requisitions for blood work.  I booked two follow up appointments.

Then I went to work.  Tried to focus, tried to get things done.  Took a break, got the blood work completed.  Went back to work for another hour.  Left at 3:30pm for a counseling appointment.

I see my counselor every 2-3 weeks.  I’d like to see her more often but it’s difficult to fit in around my other appointments, my work schedule, my kids, kids activities and kids medical appointments.  Again, as I mentioned, people with chronic illnesses aren’t lazy.  We often have numerous medical appointments that need to be juggled and fit in around already busy schedules.

Counseling is work.

If you are a survivor of trauma, and your counselor is pushing you, even gently, in the direction of healing, counseling can be exhausting work.   At the end of the hour I feel incapable of more than curling up in the fetal position on her couch and crying.  But instead I drive home and carry on with my day.

My counselor has been fairly patient with me.  She’s realistic about the fact that I have a LOT of current external stress in my life and she’s let me talk about that.  But in the past 6 months she’s begun to push me to talk about my past, my childhood, my core beliefs, and my trauma.  She’s also started to call me out when I disassociate in the session as a way of coping with feelings, memories and flashbacks.

I like disassociating to cope with feelings, memories and flashbacks.

It’s kinda my thing.

Most people don’t even realize I’m doing it.  Even fewer people would point it out.  Nobody else would purposefully try to stop me from using it as a way of coping.  I’ve always thought of disassociating as a self preservation, self protection mechanism.  I always thought I was coping if I zoned out to make a flashback less intense or make it stop.  I was coping.  It helped me survive, but maybe now there are other options…

My counselor wants me to stay present.  She wants me to TALK ABOUT what’s happening for me.  She wants me to describe it.  Or at least she wants me to stay with her in the room while it’s happening.  It’s very uncomfortable.   “But I LIKE disassociating!”  I whine…  “But it works!” I attempt to convince her.

She reminds me that I’m not alone.  That she is there to help me out of the feelings, body  memories and sensations.  That I don’t need disassociation and that maybe by zoning out I’m not actually allowing myself the space I need to heal.  Maybe I’m just stuck in a constant space of just surviving.  Maybe disassociating is actually taking up an intense amount of spoons to maintain.  Maybe zoning out is zapping my energy.

Chronic complex PTSD is exhausting.  Chronic pain is exhausting.

But maybe, just maybe doing the work of counseling and trusting the process might help restore my energy in the long run.  It’s draining work at the moment just trying to convince myself to TRY to approach my healing without disassociation.

I might have many flaws, I know I am not lazy.   Neither are you.  Keep fighting that stigma and keep surviving and thriving.

 

 

Sick Days.

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I’ve been home sick the past few days and sick on and off for a while now. It’s really difficult sometimes to separate physical and mental health symptoms.  Everything is all blurred together and it’s hard to tell when to push myself harder and when to rest.  This past week has been an explosion of physical and mental health struggles that are creating a storm of symptoms and have forced me to (uncharacteristically) stay in bed.

I haven’t met very many people who understand the complex intertwined experience of having both physical and mental health issues simultaneously.   Most doctors aren’t very trauma informed and also struggle to validate that both physical and mental health issues can occur simultaneously, and be either linked, not linked or both linked AND not linked to each other!

One of the things I’ve been coping with in the past few weeks is a urinary tract infection.   Obviously, an infection is caused by bacteria and isn’t a mental health issue.  But I was also really triggered in the past few weeks and this made me extremely reluctant to seek medical care.  I was afraid to go to a walk-in clinic, afraid to see a doctor, afraid to be examined.  This was linked both to past trauma around the medical system AND generally high levels of panic and anxiety related to stress with my ex and my kids experiencing abuse.   Thus I waited for over a week to go to the doctor, by that time my symptoms were much worse and I felt pretty awful physically.

This is an example of how physical and mental health issues can be both separate and linked at the same time.  The infection itself was physical, but my avoidance of the doctor was mental health and trauma related.   Of course you might also argue that my high levels of stress and anxiety also generally lower my immune system and make it harder for me to fight off infections.

By the end of last week I was on antibiotics, but I also developed a sinus cold.  I had a migraine related to receiving a nerve block to treat the migraines, but the sinus congestion put pressure on the nerves that were being treated.   My anxiety was causing panic attacks and making me afraid to leave the house for fear of running into my ex.

Thus again, my high levels of stress probably didn’t help any of these physical issues that I was dealing with.

When someone has an infection, generally they are advised to rest.  But resting is difficult when you are also struggling with severe anxiety and panic attacks.  My head gets filled with worries about work and what I’m missing and what people think about me being away and creating all sorts of worries and fears, many of which are not realistic.

Anxiety causes me to feel like a failure.  It causes me to feel like making a mistake is a terrible thing which can’t be recovered from.  It causes me to feel like everyone around me hates me and thinks I’m doing a terrible job.  Or worse, they think I’m faking being sick to avoid responsibilities.  A lot of my irrational worries centre around feeling like nobody believes me and that nobody likes me.

Experiencing abuse, and extending periods of emotional abuse, as well as abuse within systems, has lead me to fear and avoid conflict of any kind.  I want everyone to be happy all the time.  I get very anxious when there are disagreements and I’ll often apologize even when I’m not sure I have done anything wrong.   I’ll do what I can to avoid conflict, because when interpersonal conflict levels are high around me, my anxiety levels feel unbearable.  Because ongoing interpersonal conflict is a trigger.  I try to keep people around me happy because I want to feel safe and BE safe.

Unfortunately, in the real world, conflict is unavoidable.  Disagreements are part of life.  As the saying goes, you can’t please everyone all the time.

But I want to!  I need a lot of reassurance from people around me that I’m doing an adequate job.  I need reassurance that conflict isn’t dangerous.  I need reassurance that people believe me, that they believe I experienced abuse, that they believe I’m trying my best.  I need reassurance so badly because my internal dialogue is so self critical and judgmental.

I know it’s not the responsibility of those around me to constantly reassure me.  I know I’m an adult and I have to take responsibility for my own feelings and fears.  The difficult part is that while I’m experiencing ongoing abuse and conflict which is outside of my control, my self esteem is constantly being eroded and challenged.  I need reassurance because I haven’t yet learned to fully believe and reassure myself.

I believe this is very common for survivors who have experienced long periods of gaslighting or complex emotional abuse.    It’s hard to build up a stable sense of self when you are being confused, beaten down and made to feel like you are crazy and nobody will believe you.

Survivors need a lot of patience.  Sometimes you might get frustrated with me.  Sometimes you might feel like I’m being unreasonable.  Sometimes you might not understand why I’m SO upset over something SO little.   Please remember that it’s not little to me.  My reaction could be related to feeling triggered and that trigger is making me feel like a failure.   If you have the energy and patience to reassure a survivor, please do so.  She might need to hear thousands of times that you believe her and that you don’t think she is crazy.

I need to hear it a thousand times.  Especially on weeks like these where I feel crazy, broken and like a failure.

Being physically and emotionally sick at the same time isn’t a lot of fun.  Taking sick days when you are struggling with severe anxiety and PTSD isn’t fun.  It’s not relaxing.  It’s not “a break.”

I guess sometimes we have to carry on, try to move forward, even if we don’t believe or have faith that everything will work out for the best.

If depression were treated like a physical illness

The holidays can be a difficult time for people struggling with invisible illness such as mental illness or chronic pain.  During the holidays we are “supposed” to be happy.  We “should” relax and have fun.  We are “meant” to connect with friends and family.  It’s happiest time of the year, right?

But what if you aren’t happy?  What if you want to be happy and connected more than anything else, but you can’t be?  What if depression is stealing the happy, the relaxing, the fun and the connection right out of your holidays?

People all around me have been cancelling plans due to the flu, a cold and other winter illnesses.  This is acceptable and even expected in the winter time.   It’s even considered polite and good manners to stay home and keep your germs to yourself.  It’s understood that you aren’t feeling your best and that you have no energy when you have the flu. It’s okay to stay in bed and eat soup and sleep for hours.  People are sympathetic and nobody expects you to just “cheer up.”

I can’t even tell people that I’m sick. I can’t cancel plans.  I can’t stay in bed.   I feel disapproving looks from people around me when I’m not smiling and when I sit quietly or lose my temper  more easily that usual.  I’m exhausted, and I won’t feel better after a few days in bed.  Even if I could spend a few days there.

It’s Christmas time and I’m living with depression and anxiety.

Yes.  I’m sick.  I’m more severely depressed and anxious than I’ve been in a long time.

I want to call in sick to life.  I’m not even suicidal, I don’t want to die.  I just want to give up on “acting normal” and “keeping up appearances.”  I can’t imagine going back to work next Monday, the thought makes me panicky almost to the point of tears.  I have fantasies about developing some serious physical illness…nothing TOO serious, just enough to get me about a month off work with no questions ask, but not SO serious that I’d be in the hospital.  I want someone to take care of everything and take all the stress away.

This is what happens when society doesn’t acknowledge mental illness in the same way it does physical illness.  People who are depressed are lowered to the point of imagining horrible illness as a reason to be “justified” in taking sick leave, or even just taking the day off to rest.

Because when you are depressed you get treated like a misbehaving, whining child when you are not happy and not feeling connected.   When you are depressed you feel like a shitty parent when you don’t want to play with your kids, or you can’t enjoy your time with them.  When you are anxious and don’t want to leave the house you have to push yourself through it, even when you don’t enjoy a single minute of the activity you are doing.

When you are depressed, a “good night’s sleep” won’t fix it.  When you are depressed, “just cheering” up won’t work.

When you are depressed, you can’t just “lighten up” or “just relax.”

Believe me.  I WANT to relax.  I WANT to lighten up.  I want to laugh with my children.  I WANT to have fun with you.  I WANT to feel connected.  I WANT to feel like more than an empty shell marching through the tasks of the day.  I WANT to have energy.  I’m fully aware that I’m not acting normally and I’m terribly self conscious about it.  I feel guilty all the time about how depression impacts me and those around me.

I didn’t ask for this, any more than you asked for that cold, flu or stomach bug.

I didn’t ask for this, any more than anyone ever ASKS to be ill.

I don’t need to be fixed.  I don’t need suggestions on how I can help myself.  I don’t need to be told to look on the bright side.  (by the way neither do people dealing with chronic physical illnesses!)

I need you to keep me company while I shuffle through this dark period.  I need you to be there for me and to not judge me.  I need you to remember that I’m sick and not malingering or misbehaving or ungrateful or lazy.  I need you to remember that I’m trying my best and sometimes MORE than my best just to get through each day.  I’m using every ounce of energy to hide the depression from you, from my kids, from everyone.

I’m in pain.  I’m tired.  I don’t feel hopeful.  The world seems like a dark place and I can’t see the end of it because my thoughts aren’t clear.  Just as a runny nose and cough are symptoms of a cold,  depression makes me think that everyone hates me, that I’m worthless and that I don’t deserve basic things.   Just as a flu causes a high fever and aches, anxiety causes me to imagine horrible things and obsessive irrational thoughts.

These are symptoms.   It’s not a choice.

I’m depressed and anxious.  I’m sick and that is not a choice.

I had the best holidays I could, while not feeling well or happy.