#chronically able

Contact your medical professional!!

Don’t feel bad or weird or ashamed or guilty or like you’re wasting someone’s time, contact your medical professional!! 

You deserve your peace of mind just as much as you deserve good health.  

I’m currently on the other side of pain, a tenuous feeling I can say honestly I’m not totally used to yet, and probably won’t be for some time. 

Right now, I’m really trying to be present with my body. Even though my doctor and my physical therapist have both said I don’t have to worry about my spine falling back into the same disrepair, I’ll have to admit I’m a little more than a skeptic when it comes to matters of pain remission. So I’m soaking up these pain-free days, loving my body for what it is and how it feels. 

When I was in pain every minute of the day, I picked apart every bit of my body I didn’t like. My stomach was too lumpy, my legs weren’t shaved perfectly, my skin was uneven. All of this on top of the fact that I had a spine that was dysfunctional. Sure, it looked fine on the outside, but truly it was slowly peeling away happiness from me each day. 

Today, without pain, I love those things I used to hate. The stretch marks on my waist, the scars from my surgeries, the way my legs stick together when it’s too hot out. They’re all a part of my story, what I’ve fought for, and I hold these pieces close to me in high regard. 

But I still know many of my readers are still in pain. And on days when I wake up with muscle tension or push myself too hard working out, I feel those negative thoughts dripping back into my consciousness. 

I don’t know for sure what causes this. Do I feel less about myself because my body can do less? Do I want my body to be so different that it’s easier for me to hate even the parts I love on good days? Do I just have low self-esteem from years of pain induced trauma and doctors not believing my symptoms?

Well, yes to all the above questions, but I also believe it’s more than that. It’s that I innately don’t believe I can lead a beautiful life while in pain. And that’s the largest lie my mind tells me. Because look at all I’ve created for myself not just in spite but because of my pain. I have a beautiful support system I chose because of how they react to adversity, I made this blog to identify and help others going through chronic illness so they feel less alone, I’ve addressed my mental health as well as my physical so I can lead the best life possible. 

A good friend and fellow spoonie of mine said this to me this weekend & damn, does it ring true. 

This weekend I finally got my haircut for the first time since August. This, of course, meant there was a lot of hair to chop off, sincerely putting my “sitting tolerance” to the test. 

It took about an hour from start to finish, with only a couple minutes of standing in between the washing station and cutting chair. By the end of it, my back was aching more than usual, but I was so happy that my hair finally didn’t look like a mop, I didn’t care. I went home, turned on the heating pad and played with my soft new locks for hours before falling asleep. 

Was the pain worth it? Yes. 

I think there can be a misconception that because spoonies probably will experience pain during an activity, they should be left out altogether. A person without chronic pain may assume that their chronically pained friend won’t be able to attend an event, party, concert, etc. because of their condition. 

And sometimes, we can’t. There’s not enough left in our reserves to picture leaving our room, let alone leaving the house. 

But other times, we can. And we can without the constant questions from others of, “Are you okay? Are you sure you can do this? Do you need to go home?” 

We know you’re trying to be helpful, we appreciate it, but I trust you, we know ourselves and our limits more than anyone else does. We live in our limitations. We live with scrolling through our social media noting the concert of our favorite band we had to miss or the baseball game we wish we could’ve sat through. We live with the disappointment from others when we physically can’t show up. We live with putting off things we need to do for a day when we can manage better. 

So when we are feeling up to something, trust that we do indeed feel that. We know the risks and we probably know that we won’t feel great the next day. But we’ve decided that it’s worth it.  

To the Abled Co-Workers of the Chronically Ill & Chronically Pained, 

First of all, I’d like to say, thank you. Thank you to those of you who are compassionate, open-minded and willing to educate themselves on chronic pain. Thank you to those of you who assume the best of us instead of insinuating that we are taking advantage of our disability. Thank you for knowing that we are indeed sick on our “sick” days even if it doesn’t look the way your sick days are spent. 

To those of you who doubt our pain, I can promise you it’s there. If we’ve smiled while at work, it’s not because we weren’t dealing with searing jolts of pain in our spines. It’s because we’ve noticed how uncomfortable you feel when we’ve winced during meetings or conversations. When we’re having a bearable day and we seem to do more than our disclosed chronic pain would seem to make possible, it’s because we desperately want to do more on so many other days but are not afforded that luxury. 

I also know you may think that our accommodations are the real luxuries. That we get a different chair, aren’t required to do certain drills, aren’t mandated to assist in manual labor. Please know that we have fought for those so-called “luxuries,” for many hours, citing medical law against budget constraints. And while they may seem like luxuries to someone without a chronic illness, they literally make our performing tasks at work possible. 

I know a lot of the animosity that can occur in the workplace between the abled and spoonies comes from misunderstanding. You don’t get why we don’t just find a medical solution to our problems. You don’t understand how we still manage to laugh if we’re in so much pain. You want us to either heal and move forward or quit and focus on our health full time. 

I can promise you we know that managing our health is a full-time job on top of the one we share with you. The problem is we are not compensated for our hours spent at doctor’s offices, managing medications and creating at-home hacks for still feeding and bathing ourselves when we are barely able to move. In fact, we are charged for it. And the only way we can afford even some comfort, some results, some improvements in our health, is by having health insurance through a job, even if eats away at us to go to said job every morning, even if our bodies are begging us not to. 

In closing, I guess I’d like to ask for just one simple thing. Before you judge us, before you doubt us, before you assume we are “abusing our privileges,” stop, breathe and google the words “what it is like to be chronically ill.” 

Maybe then, you can start to get it.

Sincerely, 

Here’s the reason why I haven’t been writing as much: There’s nothing inspirational about how mad or sad or just fed up I’ve been about being chronically ill. 

But why do we always feel the need to be positive? Like yes, on the whole it’s better to be positive than not, stress induces more pain, wallowing won’t get you anywhere, but why do I always have to have this outlook of, “I’m better off for having broken my back into little slivers that are only now forming back together after cow bone was implanted in my back.” It hasn’t been a happy story, so why do I feel the need to make it one? 

I’m not saying there isn’t happiness anywhere to be found in my life. There is. And it isn’t just external, the people around me or the opportunities I’ve had. I’ve worked so hard on my mental health to override the limitations of my physical body. I feel at peace in many portions of my life. But much of that has grown out of the fury of no improvement on my pain levels for years, wanting to make more of myself than just my list of illnesses I check off at a general practitioner’s office. 

I thought that as I recovered, my happiness would overwhelm me. I wouldn’t be able to contain myself. And there’s times where this has been true. But being so close to being “better,” like “substantially better” for the first time in my life is honestly super frustrating right now. I’m so close to being done with all this: the physical therapy, the doctor’s appointments, the days of living in limbo from a real life. I’ll probably always have pain, but I’ll be able to handle it. 

I guess for once in my spoonie life, I’d like some instant gratification. I’d like to be done already. I want to return to a life where I can make choices beyond which stretch or exercise I’ll do first at physical therapy or if I’m ready to come off a certain medication. 

For now, as the days get longer and I get better, I’m going to try to find a way to sustain positivity. 

Something really hit home for me when I was at physical therapy the other day. My physical therapist was sitting next to me as I began an exercise (one I had been told by many past physical therapists to do) and she said something to the effect of, “The thing is, I don’t feel like I’m doing my job right if you come out of our sessions feeling hopeless. My whole point is to help you meet the goals in here so you can bring them into your life.” 

I don’t have the experience of being a health practitioner. I don’t know what pressures, expectations or underlying motivations are necessary for their health practices. I don’t think anyone goes into the medical field not wanting to help people. 

But I think there needs to be a shift, not just for spoonies, but for all patients, that when medical professionals are addressing pain, illnesses and issues of us that there are considerations of the whole person and their whole lifestyle. I think medical professionals really need to be empathetic and attempt to understand the frustration underlying our asking of questions, options and treatments for what we deal with daily. 

I don’t think “bad bedside manner” should be ignored, let alone expected. 

I think the only way you can truly help people heal from one ailment to a myriad of issues is by being an active listener, providing many realistic and accessible options and letting them know that while you may not have shared in their exact pain, that you have dealt with it medically (or something similar) in others and feel you can help them get through this too. 

To be empathetic does not mean that a medical professional has to have experienced the illness. When reviewing the definition, it truly just means, “showing an ability to understand and share the feelings of another.”

I doubt that many medical professionals read this blog as of yet, but maybe if as patients we all begin to expect more empathy, it will become closer and closer to a standard in medical practices.