It’s hard to love a body that doesn’t work the way it should. But I’ve realized it could be so much worse. I have a lot to be thankful for. So I’m going to give thanks for what I do have.

I’m thankful for the ability to walk, and to walk without pain. When I had a flare of whatever inflammatory arthritis I might have two months ago, walking was a painful challenge; my feet, ankles and hips hurt a lot. When I was on crutches a few years ago for several weeks after my knee surgery, I dreamed of being able to walk normally again. I’m perfectly mobile now, which is more than a lot of people can say.

I’m thankful for my sense of smell. So I can smell dinner cooking in the oven. So I can smell the rain during a storm. So I can smell my summer candles, and eventually my (favorite) fall and winter candles. This is a sense I’m expected to lose for up to a year after my brain surgery in a few weeks, which makes me very sad because I love candles so much. But it’s a small price to pay for having a brain tumor removed.

I’m thankful for my vision. Many people with the type of tumor I have lose their peripheral vision, but my tumor isn’t large enough that it’s reached the optic chiasm yet. I can see the beauty of summer all around me. I can see the leaves changing color in the fall. I can see the sparkle of snow and the twinkle of the Christmas tree in the winter. I can see the vibrant colors of the daffodils, tulips and lilacs in the spring. I can see the handsome face of my loving husband when he looks at me like I’m the center of his universe. Sight is a wonderful thing.

I’m thankful for my sense of hearing. I can hear beautiful music that makes me happy or makes me cry or makes me think. I can hear my husband tell me he loves me. I can hear the birds and crickets chirping. I can hear the crunch of leaves and snow beneath my feet. I can hear my kitties meow at me. I can hear the gentle sound of rain on the roof. The world is full of beautiful sounds.

I’m thankful that my digestive tract works as well as it does, despite having celiac disease. Now that my gut has finally healed a few years after starting a gluten-free diet, I can once again actually absorb the food I’m eating and maintain a healthy weight, rather than constantly being deprived of nutrients. I don’t like having celiac disease, but again, it could be so much worse. As long as I don’t ingest gluten, I have no problem.

I’m thankful my reproductive organs have been fixed as best as they can be for now. My endometriosis has been removed and is still gone, almost two years after having excision surgery. I still have adenomyosis and will have it until I have a hysterectomy. I can only hope my uterus is strong enough to maintain a pregnancy.

I’m thankful for my mind. Yes, I have a brain tumor that will be removed in three weeks, hopefully for good. But despite the dizziness, the vertigo and the otherwise bad days I have because of it, I still have my wits about me. I can think. I can read. I can write. I can mentally work, just not physically. I can love. I can learn. I can appreciate the world around me. I can tolerate, for the most part, the pain I still have every day from my adenomyosis.

I have celiac disease. I have endometriosis. I have adenomyosis. I have a brain tumor. I have chronic pain. I have major depressive disorder. I have social anxiety disorder. I have hypothyroidism. I’m struggling with infertility. I might have some kind of inflammatory arthritis. But even though I have many chronic illnesses, I believe I am blessed by God. Just look at everything I still have.

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“I’m tired.”

You hear it all the time. You ask how someone is doing, with a small sigh, they reply, “I’m tired.”

There are all kinds of tired.

There is the kind of tired that comes from a lack of sleep; perhaps due to a new baby or small children. It could be insomnia. It could be medication side effects.

There is the kind of tired where you have an emotional hangover. Something so emotional happened to you — a long drawn-out fight with a loved one, giving energy to too many people and not saving enough for yourself. Fighting, yelling, crying — all of that leads to an “emotional hangover” and results in being tired.

There is the kind of tired where you work too much, and never have time for relaxing.

There is the kind of tired where you are anxious and worrying about everything, which causes fatigue.

Then there’s the chronically and mentally ill person’s kind of tired.

It’s a tired so deep, no amount of sleep or caffeine can cure it. It’s a tired so strong that we can’t sleep because we are so exhausted (or in so much pain). It’s the kind of pervasive tiredness that causes us to drain every resource we have — emotionally, physically, mentally — just to function.

It is utter and pure exhaustion.

It is “sick and tired of being sick and tired.”

We all get tired. Every one of us. Most Americans don’t get the recommended amount of hours of sleep every night. Some people get through their days with coffee after coffee, while they sometimes might throw an energy drink in there just to mix it up.

That was I when I was working. There was never enough caffeine to keep me functioning.

And now, I know why. Now I know about depression and fibromyalgia and chronic fatigue and everything else that comes from being chronically and mentally ill.

Just pure, unadulterated exhaustion. All the time. Every day.

And each day, I struggle not to give into it.

I give myself a pep talk before I walk up the stairs.

I should be paying Nike royalties for how much I tell myself “just do it.”

I try to get out of bed, even if it’s just three feet away to a desk where I can at least be sitting.

Some days I give in. Some days it’s not worth the effort to fight the exhaustion. When the pain and the fatigue and the symptoms are just too much, I accept it as a bad day. I understand that my energy levels will be better on some days and worse on most, and let myself be.

Just be.

I don’t force myself to do anything. If I get an inkling or a feeling of doing something, I check in with my body and see if that’s a realistic goal for me to accomplish.

But mostly, I just lay there. Trying to not beat myself up for doing nothing. Trying to not let the depressive thoughts invade my psyche and tell me how worthless I am. Trying to control my pain.

We all get tired. Everyone, everywhere. It’s on a spectrum, just like everything else.

However, my tiredness does not invalidate your tiredness. Just because my exhaustion seems like the worst to me, your exhaustion is the worst to you.

We each live in our own realities, meaning that my tiredness is just as real and debilitating to me as your tiredness is to you. They don’t cancel each other out; they can’t be compared.

We have each had as much as we can handle. In order to combat the extreme fatigue, we must learn to take of ourselves. We must replenish our energy stores. Give your energy to things that revitalize you, that make you feel just a little lighter and freer and happier. Don’t waste it on people who are sucking the life out of you.

Your energy is precious. Guard it.

Set up good sleep hygiene. Get on a good sleeping regimen. Try to go to bed at the same time every night and wake up at the same time every morning. Don’t eat in bed; beds are for sleeping. Per my sleep technician, try filters on your electronics, like f.lux. The blue light that emits from our electronics can affect our sleep cycles. Filters like f.lux change with the time of day, helping our bodies know when to sleep. Check in with a doctor if you are experiencing insomnia and get a physical.

But also, realize that tiredness is a part a life. We all work really, really hard. No matter what we do, who we are, we are all doing the best we can do that day, that hour, that moment.

It’s OK to be tired. It’s OK to be exhausted.

It’s OK to take a day to just veg.

And like I always say, be kind to yourself.

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Every part of me wants to remain calm and levelheaded, every part of me wants to stop fuming right now (can you feel the heat emanating from your computer screen as you read this?), and every part of me wants to find peace and understanding in this situation. But right now, I just can’t. After 10 years of being sick, after three relapses, after more doctors appointments and prescription medications and alternative therapies than I can even recall, I can’t even begin to describe what this feels like…

Just a few weeks ago, I started my online college career. Of course, this was never meant to be the plan. I was supposed to physically go to college, live on (or near) campus, do the thing kids my age are “supposed” to do. Hell, I “should’ve” already graduated from college! So, just now, after hanging up the phone from a call with a family member, I was (almost) at a loss for words…

To you, this undisclosed family member of mine, if you even knew the reluctance I had to the online college experience in the first place, when my mama told me I should look into it long ago (side note: friends, a mama does tend to know what’s best), you wouldn’t have said anything. It took a long time for me to accept the fact that this was the best option for me. You would not have told me how obtaining my degree online would prohibit me from socializing and “saying hi to people” or sitting in class or doing that whole college thing I mentioned above. But guess what? I did do all of that already (at two colleges on opposite coasts, in fact!). And guess what? I hadn’t planned on even going back to school until 2017, so I was damn proud of myself for feeling good enough to start earlier than anticipated, despite getting new diagnoses and new medications these past few months. And guess what a third time? I learned that I physically can’t do it anymore. My health does not allow to me operate in that “normal” college way. And every day I have to rise above and honor that fact, because every single day, in some aspect, it is difficult to come to terms with the fact that I am sick. And that I can’t do it all and be it all — I have to get creative in accomplishing the things I wish to accomplish.

Then there’s this part of me that is frustrated with myself for even writing this — your  one-track way of thinking don’t even deserve the energy and brainpower I’m giving you right now. Why does this affect me so much? During our “chat,” you shouldn’t have waited until the very end of our conversation, long after I told you that you were being mean, to say, “Well, if you’re happy, then I’m happy.” No. Just, no. You’re not always right, you don’t know my struggle. You cannot offend me and then close with that statement — hell, a statement that is a totally backhanded affirmation at that!

So, friends, with that lively rant out of the way, and with my head a little less congested with negativity, I guess the lesson to take away today is encouragement, acknowledgment and love.

To my friends and my family members who accept where I am, who support me and uplift me, who remind me that I am doing the thing, despite my hurdles: thank you. Thank you more times than the greatest number that even exists. There is nothing better than feeling your love — for me, it really is the most wonderful, inspiring medicine in existence.

And to those of you who don’t have the words (undisclosed family member, I’m talking to you)? I am here to tell you that asking questions is a beautiful thing. If you don’t know, get educated; if you’re confused; seek until you find; if you’re lost, there is someone willing and able to guide you! In its own way, asking a question shows your support. It shows that you’re committed to understanding and embodying something you previously could not comprehend. It shows that you care. And let’s be honest, the world could use a whole lot more of that good lovin’ all around.

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Having a chronic illness is more then just feeling unwell. It’s all-consuming, scary and bit by bit it can eat away at your life until there seems to be nothing left.

Most of the time, I tend to provide the outside world with the version of me who looks well. I barely talk about the pain, the fears and the frustrations. I want people to see the person I am without the illness coloring their views, but this also means they only see a part of me.

Underneath the facade lies a river of emotions, ranging from anger, frustration, fear to simply feeling numb. Day upon day, as my body does yet another unpredictable thing, the mask gets harder to hold. This leads to isolating yourself simply because you don’t have the energy to provide the outside world with that cheery sarcastic person you have always appeared to be. As the days that I see people diminishes, depression sneaks back up on me, and I am finding it a fine line between staying mentally healthy and sinking back into the all to familiar world of darkness that I have become accustomed to.

It is difficult to be in pain. It is difficult to feel exhausted for no apparent reason, and it’s difficult to explain the invisible symptoms in a way the uninitiated will understand. How can I possibly explain that I can’t even wash more then once in five days or cook myself a simple meal anymore? How can I explain it to people when I look so healthy on the outside?

I used to be a different person. Having essentially grown up with pain (be it emotional or physical), I became adept at pushing through. I have a stubborn streak, and this meant I was able to force myself into my work/studies/social time even on the worst of days. I was able to push myself far beyond the point that I should have stopped, and it is this part of me that is most frustrated.

For the first time in my life, I have to stop. There has been no choice in this. It isn’t laziness or a lack of motivation — I have simply reached a point at which my body has decided it can’t be pushed anymore. I used to be extremely active, and I used to keep up with my hobbies and travel around unaided even though I was usually only managing two to three hours of sleep a night. I had big dreams for what the future would hold. Dreams of what I would become and what I would work as. Dreams of fixing myself somehow.

Alongside chronic illnesses, such as postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS), you’re often forced into the position of having to reassess your abilities. As each day goes on, your dreams and independence are slowly stripped away from you. You’re suddenly aware that all of the things you had worked towards may not work for you any longer; you may not be able to keep up with the pace of the type of work you have always dreamed of or are in too much pain to keep up with your peers. Every aspect of your life and your future is now colored by the knowledge this unwelcome bedfellow will be with you for life.

So when those in the outside world are telling me to “buck up,” “get on with it” or that “things will get better soon,” it makes me want to scream. The number of well-meaning comments that go along the lines of “Have you just tried to ignore it?” or “I know someone with a disability far worse then yours and they run a business” meant in the nicest of ways can actually lead to you isolating yourself more from those around you for fear of frustrating them with your perceived pessimistic views on life.

I wish I could be totally honest with those around me, but like other chronically ill people, I have learned that looking well leads to far fewer issues then laying yourself bare.

Perhaps one day I will build up the courage to speak these words aloud or to answer truthfully when someone asks how I’m doing. Until then, I will continue to perfect the happy facade (while swearing under my breath as yet another joint goes on an unexpected and unwelcome visit to its neighbor).

Follow this journey on Life on the Stripy Side.

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“You look so pretty! How can you be sick?”  

Great, I thought, as I forced a smile. Another comment that was meant to be a compliment, but it secretly grated on my nerves. Why is it when I am complimented or we as a community of people with illnesses/conditions are complimented, there has to be an additional comment referring to our illnesses? Why can’t I just be pretty? What do my conditions have anything to do with beauty? Is that what people see when they look at me? My conditions?

I had put on makeup that day, feeling half-human and telling myself this would be good for me. It would give me something to focus on instead of the relentless pain shooting down my spine and into my legs. I was starting to regret putting on what felt like a gallon of makeup and a pound of spray in my hair to tame weeks of cramming it into a sloppy bird’s nest on the top of my head.  

I was tired of looking tired. I was tired of the acne I had developed from the prednisone I was taking, and my jeans were tired of it, too, as I had started gaining weight. I just wanted to cover up everything in my mind that made me look sick. My thinning hair, my weight, my skin, the bags under my eyes — all of it plagued me. I was starting to look how I felt, and at the time, I still was limping from a torn labrum. I wanted to mask any reason for anyone to judge me. This is one of the many things I have started doing regularly since my body betrayed me years ago, and it’s still something I am struggling with to this day.

I have heard everything from, “You’re young, you don’t know about joint pain” to “Do you take supplements? I bet if you started taking turmeric, you wouldn’t feel so drained all the time!” However, my personal favorite has been, “Well, you look fine, so how can you be disabled?”

When you are met with remarks as these, it’s almost as if a switch is flipped and your anxiety and depression goes into high gear. There are moments when you feel guilty for eating out or doing something as simple as a walk in the park or going to the salon. If you are enjoying yourself, how can you possibly be sick? If you appear happy, then how can you be in pain?

You try to explain things to people about your conditions (mine happen to be ankylosing spondylitis and Ehlers-Danlos syndrome, along with sub-conditions that go along with them.) But to others, it sounds as if I have a curse that came out of one of the Harry Potter books — ankylosing spondylitis! Poof! Alas, I have no magic wand to wave to repair my body or to magically make others see how commenting on my appearance or health sends me and others I have come to build friendships with up the proverbial wall.

To truth is people will always have opinions, and what I have learned is you owe no one an explanation of your appearance. You owe no an explanation of your pain level to anyone.  

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This month I was due to go back to a very challenging work position. I’ve done this type of work before, but because of relative inexperience in the field, I had much less responsibility and autonomy and a minimal work load compared to others. Regardless, I loved it. I’ve thought about it every single day since I left and miss it more than I’ve ever missed any position or academic endeavor.

The other day I had an informal meeting about it all. I asked that the start date, for the end of this month, be pushed back to allow me time and space to go to all the specialist appointments I have lined up over the next few weeks and to get the infections that at the moment will just not retreat under some sort of tenuous control. This morning I got a very friendly e-mail saying the date could be pushed back within reason, and they also asked if they could have the medical reports for a health risk assessment to figure out how best to support me. All I wanted was to hide.

If you saw me walking down the street, you wouldn’t be able to tell there’s anything medically wrong with me. Even people who know the “story” tend to comment on how well I look. My list of diagnoses includes epilepsy, angioedema, a predilection towards recurrent, persistent, severe infections and a host of systemic autoimmune issues as well as a propensity for blood clots. Actually, the list gets very long and boring. What is important is that other than the occasional miracle day when I wake up to find the planets have aligned and I am feeling well, most days involve some sort of physical problem. To spice things a bit, the problems vary day to day.

Yesterday I had angioedema. I spent the day swollen beyond recognition with a blood pressure of 65/47 and was too dizzy to stand. Today I have a high temperature from an infection that is coming back for the third time in two weeks despite long-term and acute antibiotics. Three days ago, I spent the day with excruciatingly painful frozen, blue toes and burning hot and purple fingers. Four days ago, I couldn’t eat or drink because of the infections. Five days ago, my left knee gave out from an MCL tear and general connective tissue non-cooperation, and I fell down the stairs; that was before my shoulder popped out of its socket for the hundredth time. What I’m describing is actually an OK week with only minor issues, but you get the drift. Oh, and it goes on and on like that ad infinitum. Every single day. For the past 10 years.

A number of things invariably happen when one’s physical existence is attacked repeatedly on multiple fronts. People learn to live with anything their disorder throws at them and become experts at rapidly adapting their schedule and the level and/or type of activities they can do on any given day, any given hour, any given minute. This tends to be endlessly frustrating for people who are well and just cannot understand why when you look exactly the same as you did yesterday you’re now saying that you cannot possibly stand for 20 minutes today when standing for 30 minutes was OK yesterday.

What is also true is that people with chronic conditions get very good at hiding the symptoms of said conditions in front of others. As painful as the physical side of illness may be, the emotional and psychological sides are infinitely more so. And while I can’t speak for anyone else, sometimes I just want to go to work and have that just be the end of it. No adaptations, no risk assessments, no endless discussions about disabilityMaybe that’s denial, but let’s not forget even that can be useful sometimes. There’s also an aspect of not wanting to make a fuss about a situation we have already figured out how to adapt to, oftentimes at a great personal cost to both survive in this world and to maintain a facade of wellness.

And of course, there’s fear. Fear of being looked at differently. Fear of losing a job or degree or interview for the thousandth time. Fear of our vulnerabilities being exposed, for all to see. And yet those fears are not unique to those of us who happen to have a chronic illness (or two!), but common among all.

Yet being consciously aware of the psychological nuances behind an emotion isn’t enough to alter it; hiding from that risk assessment and just going to work still sounds like a good idea!

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Lead photo source: Thinkstock Images

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