Despite it All

And here you are living, despite it all. -Rupi Kaur

When you are struggling with mental illness and/or chronic illness and/or chronic pain, life can be overwhelming. Every day feels like a battle with mood or symptoms that keep you from feeling your best. You struggle with guilt over not being able to do the things you once did, or not being able to do them as often, or sometimes, criticism from friends/loved ones who don’t understand this seemingly new person that you’ve become, when in actuality, the imposter was that person they saw before it became too exhausting to put on a façade of wellness. Too, there’s confusion about how some days you might actually be feeling well enough to be a glimpse of that person you were, smile, be happy and people wonder, then, why you can’t be that person all the time. And if that weren’t enough, there are those who will criticize you or question the legitimacy of your illness because you have days where you are happy.

But this post is not about all that. It is about this:

“And here you are living, despite it all.”

If you can, take a moment and consider everything you have gone through in your life. Think about the stress and anxiety you have felt before knowing a diagnosis or the continued stress you are feeling because you have yet gone un-diagnosed; think about all the anxiety and pain your mental illness has caused you; think about all the symptoms you’ve had to deal with because of your chronic illness and think about the physical pain you’ve experienced because of your chronic pain.

You are still here, despite it all. You are alive and important to those around you, and you have gifts of your experience and perseverance that you can pass on to others. You didn’t give up, and even if you did for a while, you were able to push through and continue. These experiences can sometimes be gutting but every day you fight back you are giving yourself the opportunity to live and touch other lives by connecting with them through similar experiences. It doesn’t mean you have to start a blog or try to become an influencer on Twitter or TikTok, but just opening yourself up to the idea of sharing your experience with someone who you think might benefit from hearing it. Sometimes, it can be the simplest act that can save someone from the edge of despair, and because we have been there, we might see the signs before someone else notices.

It’s not always easy to sit down and reflect on everything that has happened to you or is still happening to you and feel good about still being here. There are times where it’s such a struggle and such a painful existence that you wish it were over and yet you fight because there’s that shred of hope that tomorrow or a month from now won’t be as bad. You look for things that bring you joy and peace and you hang on to that for dear life. And sometimes, you are lucky enough to have a few hours, or a day or a week where you feel normal and unburdened by your health. You are able to enjoy things and you are cognizant of that and you savor each and every moment. These are the things we have to pass on to people who find themselves in similar shoes. The hope that is possible. The hope that can be. The hope that despite it all, you will survive and the hope that despite it all you will thrive.

High Functioning and Disabled

What you see

is not how I feel.

A carefully crafted exterior

ghosting past 

friends, family and strangers

with that perfect smile-

doing everything I’m supposed to,

or close to it.

While in private, I collapse.

In private, I cry.

In private, I fall to pieces.

But before you see me again,

the pieces are taped together,

the smile arranged into place,

and the carefully crafted façade

is all you will see.

 

I first realized how dire my personal battle with pain was almost 15 months after I stopped working and I didn’t feel a noticeable difference. There had been some hope I’d been harboring, mostly in secret, that a little rest and relaxation would somehow, miraculously cure me. That truly brought the complex nature of my chronic illness/pain, into sharp focus for me. What was worse, was that now that I was considered a “house-wife” (and while I could write a whole other blog on the misogynistic origins of that term, what I simply mean here, is: not working outside the home) it seemed that I was even more busy than when I was working. There is this pervasive idea, that not being employed outside the home makes your life easier, when in fact, it does not. It does afford me some luxuries that working did not, such as: being able to take a nap when I need it, or the ability to spend a lot of time in the bathroom when I need to, but much of the time I am just as busy, or busier, than when I was going out to my job. Oh! And I do not get paid! However, this ill-descriptor leads both men and women to look at you with a measure of contempt, as though some great weight has been lifted from your shoulders and you should be elated and profoundly grateful for your situation. Oy…

 

Let me start by saying that I do not feel any resentment toward my “outside-working-counterparts.” I can’t fault them for their perceptions, however skewed it might be, partly because of how all facets of the media portrays those of us who stay home. I’ve mentioned before that lovely, turn of phrase, “staying at home and eating bon-bons.” Makes me grate my teeth till my jaw hurts, but I get it. At the same time, it’s those ill-conceived notions that make life so much harder for us who are struggling with chronic illness of chronic pain and spend the majority of our time at home. To bring this all together (finally) is that people, including friends and family and a good number of strangers, see me and many of us in the chronic world, as “high functioning.” Let me add here two things. The first, is that those who actually go out to work have an even harder time than I do. Their peers only see an individual who functions at work like a healthy person. The second, is that I added my situation within this definition of high-functioning because I consider my blog and my free-lance writing, my work and I also manage my house and everything that goes with that, from grocery shopping to cleaning and I also have all four of my children still living at home, in various stages of adult-ing. We are all seen as “high-functioning” though I would use “surviving” in its’ place. Many of my fellow warriors have no choice but to work. I have the luxury of being able to stay home, though “luxury” is not the word I’d use because we struggle a lot. I have a good partner, an empathetic partner, who knows that working outside the home was not only physically difficult, but mentally draining. I don’t want to be the kind of employee who misses work all the time or can’t keep up with my share of the work. It kills my self-esteem.

 

My biggest problem with “high-functioning” is that it fails to acknowledge my daily struggle. It fails to acknowledge the vast number of us that are defined this way solely because we’ve mastered the art of blending in. We’ve become as adept as a chameleon in masking how we feel because life does not simply come to a halt because we are having a bad pain or flaring. There is also a fear, for some, that if they are open with their situation that they might not have a job in the future or, that their employer may begin to scrutinize their work, looking for an excuse to let them go out of fear their job performance will eventually suffer. Slyly hiding within all this is the blind-eye we also feel from family members and friends and even strangers, with regards to our pain/illness. It never fails to surprise me how even those closest to me, evade the obvious.  It’s as though if they ignore it, it’s not there. There is also the continued attempt at comparing how I feel to how they feel after they’ve had a bad day. It puts me in quite a pickle because on one hand I am mentally screaming at how obtuse they are while on the other hand, I don’t want there to be this conversation about how I feel so much worse and ticking over the infinite number of symptoms and reasons why it’s not the same thing. Finally, there’s the pity that seems to be the go-to when they don’t know what else to say. I don’t want your pity, I don’t want to hear some cookie-cutter sympathy. I want you to stop for a minute and try to have some empathy. I want you to try to understand that while I might look “fine,” I’m far from fine and you don’t have to be psychic. What I have will never go away. You sprain your ankle or twist picking up a box, you might hurt for one or two weeks. I won’t ever wake up and feel better. You ache and feel miserable from the flu. A week later you’re up and around feeling better. I flare and feel like a train hit me sometimes and that won’t go away. It might for a few weeks, but it will happen again and again, no matter how hard I try. But I’m “high-functioning.”

 

It seems ridiculous to label someone “high-functioning” when all we are doing is living. Is there another option? Maybe I am being too sensitive about a label that implies I am doing pretty well for what is going on with me, but when that definition misleads people and gives them the wrong impression? Yeah, I take issue with it. I might look like I have it together, but I’m still disabled, I still struggle and the pain is very real.