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The Symptoms of My Chronic Illness I Don't Let My Coworkers See


I am lucky enough to be able to work part-time while managing my chronic illness. To do so means I must keep a lot hidden from view, behind a more presentable mask. I do my best to smile through the bad days and to not let my symptoms show.

If you catch me at the right moment I might give you an honest response when you see me at work and ask “How are you?” And I see confusion cloud your face when my answer doesn’t match up with what you were expecting. Sometimes I have to hold my tongue as you correct my response or offer your own assessment of how I am doing.

I can see how easy it is to imagine that the me you see here at work extends beyond 5 p.m. into my evenings and days off. That this put-together, functioning person continues into an active social life. To think that this elaborate façade is all there is to me.

But what I need you to understand is that you only see the very best of me. There is much more I will never let you see.

You don’t see the isolation, the days spent propped up on my bed desperately trying to refresh my weary body. When no amount of inactivity can make my body remember how to store energy. You won’t know just how boring and frustrating rest can be, when it is forced upon you. When your companions are headaches, muscle pain and the characters on the television. On those days you try not to open Facebook because seeing all those happy smiling faces leaves you feeling horribly alone. It is as though you are moving in slow motion, while the rest of the world is speeding past.

I don’t let you see the fear. How terrifying it is to have a body that is seemingly out of control. To not have any idea what the future holds and watch you life deviate from what you had planned. I get worried when each new thing I try to help, doesn’t make my symptoms better. Or panic when my memory fails and important things like my postcode slip out of my mind. You don’t see how afraid I am that there will come a day when I can no longer force my body to go into work. That this job may be another thing that my illness will take from me.

I don’t let you see the times when tears fill my eyes at my desk because my brain is so tired and so full of fog that the noise in the office feels like a special kind of torture. Or the days where I don’t leave this floor because stairs would just be a step too far. Or when I have had to stand up longer than my muscles could cope with and I sink into my chair, my body shaking from the effort of it, all the time knowing I’m going home to a flat that I will be too tired to clean and to food I don’t have the energy to cook.

And when you see me at a social event, you don’t see the careful planning that has gone into minimizing the damage. How I’ve tried to ration my energy all day to save it for this. You won’t see the inevitable crash afterwards, because no amount of preparation ever prevents the fallout. You can’t know that I will be paying for this outing for days or even weeks to come. That sometimes the worry about how high the cost will be, can stop me from enjoying whatever it is I’m doing in the first place.

And I don’t expect you to know all this. I know there are many parts of your life that I also don’t see. I don’t know what your smile is covering.

But I would ask that you stop for a moment when I tell you how I’m doing. Before you dismiss my words and give your own opinion on my situation. Stop and remember that there are parts of my life that you don’t see. And I will try and remember the same for you.

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4 Ways I'm Achieving My Goals Despite Chronic Illness and Pain


Having a chronic illness and chronic pain when you’re young can prevent you from being able to go to college, go to work or have a career. When  simply getting through each day is your full-time job and doctor appointments wear you out, you need to adapt. Well, if you want to feel fulfilled and like you aren’t missing out on your life, you need to adapt.

I’ve watched my friends graduate from college, get settled into their careers, get married, have children, the whole shebang. Whereas I’ve remained stagnant in some of those areas.

However, I’m very fulfilled. I have amazing friends, an incredible significant other, I’m constantly learning new things and I take some risks every now and then.

What has helped me the most are these few things:

1. Social media. I may not be able to be out and about with my friends or stop by and visit with them regularly, but I can remain actively involved in their lives and share mine with them through social media, chatting, sharing pictures and texting. We always try to get together for dinner every few months but we stay in touch regularly online. If it weren’t for social media, I wouldn’t even know my significant other! I met him through a friend, and that friend found me on social media. It can be a very useful tool to keep you from feeling isolated and left out of life.

2. I have a ton of passions and interests. I have ones I can do even when I’m in really bad shape physically, when I can’t sit up straight or move much, like puzzle books, puzzles and games on my phone. Crocheting. Console and PC gaming. Writing poetry, songs and articles. Taking free online courses from Harvard and other online learning resources. Then there are the hobbies that require me to sit up and move a bit, like pixel bead art, playing the ukulele, playing the piano, singing, drawing, painting, sewing.

3. Taking a risk every now and then. When I have an amazing opportunity come up, like playing the piano for a Gala, or tickets available as a gift to me to go to a comic-con or concert, I leave my fear behind me, the worry that I may be too sick to do it. Sometimes, the day comes and I’m not well, but with my meds and stubborn personality, I’m often able to push through (as long as they are spread out and I’ve prepared ahead of time, resting the week before. I also need to give myself time to recover after.) I never regret these risks. They are some of my most memorable and satisfying moments. Living in fear of the “what ifs” is no way to live. If it winds up that I am incapable of doing what I agreed to do, it’s OK, because I’ve made back-up plans. Informed others of the possibility. Have found a way to make it work. It would be easier if I was healthy, but it is still something that can be accomplished. I’ve gone to concerts or events when I could barely walk. The people who work at these venues are incredibly helpful. Found me wheelchairs. Showed me through special doors inside that meant getting to the seat quicker, and I never even had to ask them. They saw me struggling and offered.

4. I rearranged my definition of a happy life. Having a degree in a certain field would be lovely and is still something I hope to achieve, but even if I never do, I’ve realized this is not what will make me happy. I’m already happy because I’ve focused on building close, loving relationships. I decided learning and doing interesting things is more important to me than having the degree to prove it. I’m always learning. Music is my biggest passion. So, I’ve found ways to share it with others from the comfort of my own home and do it for the love of it, when I’m able.

I have goals, and I do hope my health improves over time, but even if it doesn’t, I want to look back, five, 10 years from now and feel satisfied. Have memories instead of regrets. Everyone is different. What will fulfill your soul will be different than what fulfills mine. Identify what will make you happy and what is important to you. Then, brainstorm to find creative ways to achieve it. It’s likely you won’t be able to achieve them all, but even healthy people struggle to achieve all their goals. It won’t always be easy, but it’s worth it!

You deserve to be happy!

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Thinkstock photo via stevanovicigor.

15 secrets of people who can't work because of an illness

15 Secrets of People Who Can't Work Because of an Illness


If you have a chronic illness, you may know what it feels like to be a “full-time patient.” Between the physical and emotional symptoms, constant doctor appointments and numerous tests and procedures (not to mention keeping track of it all), being chronically sick can become a full-time job in itself. You may find yourself needing to cut back on hours or stop working altogether due to the demands of your condition.

Although this may be a necessity for your health, other people don’t always understand why you’re not working. They may have misconceptions that you’re “lazy,” “on vacation” or “so lucky!” but as those of you with chronic illness know, this couldn’t be further from the truth. By hearing what it’s really like to be a full-time patient instead of a full-time employee, hopefully others can begin to be more understanding and less judgmental. So we asked our community to tell us the secrets most people don’t know about not working due to illness.

Here’s what our community told us:

1. “I’d much rather be at work. People look surprised when I tell them that, like I’m on some luxury vacation and they can’t understand why I would ‘choose reality’ over said vacation. They have no idea that I’m home because it’s physically too much for me to be anywhere else. So yes, I’d rather be at work because being at work means I’m healthy again.”

2. “Enjoying the good days can make you feel really guilty. As though the energy and rare moment of being functional should be used to do something ‘productive’ rather than doing something fun. Logically I know that one good day doesn’t mean I have to ability to hold a job, but mentally I feel like I haven’t ‘earned’ the right to do the fun stuff.”

3. “It’s not ‘fun’ and I don’t have ‘a multitude of free time.’ All my time is spent being sick while trying to perform the most basic of daily activities. I wish I had the luxury of being ‘lazy.'”

4. “‘Work’ is a loaded term. The bigger picture: Working outside or inside the home for yourself or someone else, including housework/yardwork, etc… In my case, my full-time job is taking care of myself and medical needs, aside from low-key housework and the occasional low-key yardwork. Also, we don’t get ‘time off,’ a ‘break,’ or ‘vacation’ from our illnesses, and subsequent appointments.”

5. “I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my body than I needed to, because it was such an important part of my life. I lost 95 percent of my social life when I left — being single and at home all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon — there are only so many episodes of ‘Law and Order: SVU’ a person can watch.”

6. “It wasn’t a party. Contrary to what some may think, surviving being in that much pain was indeed a whole lot of work – even if the reward was not monetary. Someone made the mistake of using the word ‘lazy’ to me and my husband made damn well sure to explain exactly how wrong that was.”

7. “Disability is a full-time job. I’m a professional patient. I fill out paperwork constantly. I have to prove that my chronic degenerative disease hasn’t suddenly gotten better. And my income is less than half what I was making but my expenses are the same, higher if you figure in all the healthcare copays and expenses. And no, I can’t walk your dog, watch your kid, go out shopping. Some days I’m barely managing to shower and if by chance I’m having a good day I have my own dog, a backload of housework and grocery shopping as priorities.”

8. “I think many people see me and because I wear makeup and fix my hair, I don’t look disabled or ill. They don’t see me on the days I can’t get out of bed. The days I need help to take a shower or dress myself. I try to be positive even when I’m in pain. I have a disease that gives me vertigo and left me deaf in one ear, partially deaf in the other. I have had spine issues. People don’t see me vomiting into a waste basket while sitting on the toilet… I suppose I’d tell others that many disabilities are hidden.”

9. “Trust me, I would love to hold down a regular job. I would love to be able to use the degree I will be in debt for the rest of my life for. I would like to get to the end and feel like I accomplished something rather than live day to day.”

10. “You can have a debilitating illness and be legitimately medically disabled and still denied disability benefits by the government. You can be homeless due to your disability preventing you from working and they often still deny you (thankfully I am not homeless due to supportive family, but my lawyer’s office works on cases like this).”

11. “No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem. When you can’t work anymore, it is very hard to see yourself as worth something to people. You feel isolated because everyone is so busy with their lives they don’t have time to come and see you. They can meet other friends out, but you can’t do that. If you do go out, you pay for it later. It’s as hard mentally as it is physically.”

12. “I’m bored out of my absolute mind. I loved working and until my health got really bad, my job actually took my mind off it for the most part. Having nothing to do all day now drives me absolutely crazy. I hate doing nothing but my body is rarely up for much else.”

13. “The guilt I feel all the time. I feel like I’m not contributing financially to my marriage and our family. My husband reminds me that he would rather have me around than have me try to work a lot and wind up in the hospital. It’s not even like I end up doing all the housework when I’m home all day. Sometimes getting one thing done is a monumental achievement. And being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun.”

14. “The isolation from limited human interaction is heartbreaking. I feel like an expert level clinger when my husband comes home from work or I finally see a friend. The desperation is soul crushing. I honestly would work telemarketing just to be able to talk to people if I could consistently work up the energy. To be a people pleaser devoid of peers? It strips you of your personal identity.”

15. “When I cannot work I cannot just decide that I can return. I have to wait until the symptoms subside enough to allow me to perform basic work functions. No amount of positive thinking or appearing to do better will make me functional in a way that it is beneficial to those paying me. I’m doing better now and still cannot work full time or on a regular schedule. It is outside of my control. It’s not OK and yet I have to accept it. I’m lucky to have a flexible schedule and work from home.”

silhouette of a woman sitting outside under a starry sky

The Importance of Processing the Emotions Caused by Illness


 

Feelings. So many feelings. I am certain there are emotions building up within me because I feel something: I’m just not sure what I’m feeling. I don’t know if I’m angry or sad or any of the other emotions I can’t put a name to.

I have been dealing with my chronic disorders for 13 years, so it’s something I’m well-accustomed to. I’ve managed to accept it as my “new” normal, so generally I’m relatively unfazed by it. Unfazed, in this case, meaning I don’t get too emotional when I have flare-ups or when I remember how much my diseases have taken from me. I don’t know if I’d disconnected from my feelings or if I’d just stopped feeling anything in relation to my condition.

However, recently I’ve been through a patch I have struggled to understand. I’m at a point wherein I am suddenly angry and frustrated and disappointed all the time. I can’t think about anything else. I don’t even know all the emotions I’m feeling. I know why I’m feeling what I am: it’s been set off by a particularly difficult medical patch. The sudden influx of overwhelming emotions has suddenly left me feeling lost and confused.

Am I wrong to be feeling what I am? What changed? How do I deal with emotions that I’ve never had to process before? Where do I begin to break down what I’m feeling?

While life may seem easier when emotions are left out of the mix, they’re not something we can avoid forever. They will catch up with us, no matter how OK we think we are. It’s not a bad thing. Emotions can be scary, but only if we choose to run from them. They need to be embraced and dealt with. It’s time to start facing the monsters in your closet.

Processing emotions is simple in theory, but much harder in practice. It’s also something that gets easier with practice. Oscar Wilde wrote in “The Picture of Dorian Gray,” “I don’t want to be at the mercy of my emotions. I want to use them, to enjoy them, and to dominate them.” We need to learn how not to be at the mercy of our emotions. We need to get better at identifying emotions. Perhaps if I knew how to untangle the mess I’m feeling, I’d know where to start in deciphering it. But identifying emotions alone isn’t enough. We need to take it a step further. We need to process them. Everyone does this in their own way: it may be through talking about it or writing about it or any other form of release. Regardless, they need to be processed. It must be understood. Why are we feeling that emotion? Is there something we can do to ease the cause? If not, what do we do about it?

I don’t think anyone has really discovered the secret to mastering emotions, but there are certainly lots of people who have tried. There are certainly many people who have lots of experience in helping others deal with their emotions. Spend some time tackling your emotions. It will make your life a lot easier.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Delpixart.

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Dear Illness: Here's a Reminder of 4 Things You Cannot Steal From Me


Dear illness,

You have taken a lot from me. You have shaken and tested me. You have inflicted so much pain, loss and grief. You have challenged the foundations on which I built my identity, my relationships, my future and present.

This letter however, is not about the loss you have brought, nor the pain you have inflicted. I certainly don’t wish to give you that kind of satisfaction. No. I am here to remind you what you cannot take, what is rightfully not and shall never be yours to touch – the elements of my life
which will not be shaken.

Illness. You bring the crash of the waves and the brunt of the storm. You bring the diagnoses and symptoms. You influence my emotions and have triggered my questions and doubts. Perhaps you seek to drown me in the sea of them, overwhelm me with their intensity and poison me with the taste of their bitterness. Your insidious nature lurks under that label of “chronic”. I know you love that label. It strikes fear into the heart of the inflicted. Fear of the unknown future and frightening concept that there is perhaps “no cure.”

However, despite your schemes and obvious attempts to damage me: I have learned to stand unafraid of you.

In fact, I want to point out just where you went wrong. The scheme you designed to destroy me has become the one which will strengthen me.

Illness, you have unveiled to me the fragility of my human identity – my weakness, vulnerability and temperance. You have left me sobbing through the nights and brought with you a seemingly endless flow of disappointments.

In your exposing of the temporary you have shifted my focus onto what is constant and stable throughout the ebb and flow of symptoms – the everlasting through the storm you inflict.

Illness, your attempts to clothe me in darkness have only made what is light shine so much brighter. I don’t think you should be surprised by the power of this light. In fact, if I were you, I’d be afraid. As no matter how fierce you get, no matter how much you seek to crumble me, to destroy this damaged body and taunt my pain-stricken mind, you shall never touch what I hold most dear.

1. You cannot take love from me.

I am loved. That is a truth, a steadfast fact. In those nights where we have sat together in the darkness of pain you tried to make me doubt that fact. You brought me to a place of loneliness and made me feel forsaken. However, again and again I have seen that you are lying, illness. I am loved. Loved by the people in my life who have remained by my side. The friends and family who are devoted – who love me despite my imperfections and your threats upon my body.

Together unfailing is the love of my Father. I know this shall never leave. Constant through your waves and faithful in your schemes, this love shall be with me always. This love has extended to the deepest corners of my heart, opening windows of compassion and doorways of understanding, changing the way I perceive and feel. This Love is certainly unrestricted by you, illness.

2. You cannot destroy my hope.

My hope is the confidence in what has not yet occurred. It’s like a shining light in the darkness – a reason to keep pressing on. A reason to get up each morning and fight. Fight for each of the little tasks which you now ensure take so much effort. Hope is that burning fire within me which you sure cannot dull. Hope is this gold substance, precious within my heart. Hope is an ambassador which encourages me to persevere and a friend
who proclaims that victory. Illness, despite your presence I hold fast to my
portion of hope.

3. You have helped to re-frame my definition of strength.

Illness. I’m sure you were not intending for me to see strength this way. I’m sure you want me to envisage running half-marathons and attaining perfection. But, thanks to you, I have learned to re-frame my definition of strength. My strength is not measured by compared “successes” from those of my past-self. Nor is it benchmarked to a standard set by those around me. No – my strength starts from deep within. It’s that quiet confidence that, no matter how many times I am challenged, knocked down, deflated or disappointed by you, I will get back up again and try. Yes, you have made things difficult, illness. Made it harder to walk, to stand and do the most basic of tasks. You have made my muscles weak and beat my heart far too fast.

My strength however, isn’t a measurement of perfection, but that of perseverance. You have taken from me perfection, but you shall never steal this heart to persevere.

4. Never shall you taint my faith.

This is a big one, illness. The one you have relentlessly tried to attack. That pain you have brought planted doubts in my head. Challenging my beliefs, confusing my world perception, cornering me in a position of vulnerability. Nonetheless, like gold when thrown into the fire, my faith has been strengthened through you, illness. Faith is the substance of things hoped for, the evidence of things not seen.

As you, illness, altered my physical world, as you inflicted pain, put road blocks in the path of my activities and darkened my emotions with a quiet sadness, I needed to place my confidence in something above my failing body.

I learned to look beyond the here and now. To place my confidence, my assurance of faith in what was not yet seen. The process of believing without seeing, trusting withhold necessarily experiencing has grown my faith. The storms may come, the fire may burn and disappointments may arise, but solid faith shall remain through it all.

So illness. I’m not sure if I would go so far as to thank you for your unwanted presence in my body. I would honestly love for you to leave me be. However, in the light of your current presence, I can confidently say to you this:

You haven’t won this race. I am equipped with these foundations that you shall never shake. I am in this till the end. 

Your presence, whether chronic or temporary, severe or mild, debilitating
or manageable, will not define me. You will not destroy me.

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Thinkstock photo via dolgachov.

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The People We Go to When Our Health Is at Its Lowest


Many of us go through rough times, whether it’s at the hands of mental illness, chronic illness, living with a disability, etc. For those of us who are lucky enough to have people we feel we can turn to when we’re in despair, feeling broken, fed-up and defeated, it can feel like both a blessing and a curse at times.

The person we text when we’re in desperate need of reassurance, support, a shoulder to cry on, somewhere to vent or even just to be listened to, may not even be our closest friend. They may not be a family member, a parent or best friend. They could be an acquaintance. They may even be someone we’ve never met. Someone we know only online, but they see a side and level to us that not many others do.

They see a vulnerable side, what we try to cover up or keep to ourselves.

But what they offer us when we’re at our lowest is invaluable and actually makes them, really, the most important person in our life. I’m not saying they’re of higher importance to you than your partner, parent or child, but if you think about the amount of times they may have convinced you that you do have something worth living for, that you are strong enough to overcome your obstacles, or just listened to your deepest fears and upsets – they have helped you get through some pretty dark times. They’ve helped you get through some tough battles and moments of despair. Cries for help.

They may well be the reason why you’re still here at all.

And chances are, if they’re the same person you always go to, it’s because they don’t judge you. They are reliable and supportive, and that’s a valuable person to have in your life.

When we are hurting physically, mentally, or emotionally, we often need an outlet – whether that’s screaming into a pillow, doing something creative or venting it to another person. It’s healthy to do so and bottling it up usually just results in a worst outburst later on down the line. But after we turn to someone to vent it out, we may end up feeling silly, embarrassed or ashamed for letting down our wall, after the dust has settled. And we think to ourselves, “I should have kept that to myself.” We may even send countless texts apologizing for our behavior afterwards, of which we don’t need to apologize.

But we don’t want to bother someone else with our burdens.

However, we go back to the same person when life becomes just a bit too much again because they help.

This person and the support they provide are so important.

Part of the reason we have managed to last so long at the hands of our personal difficulties, is likely due to their support and friendship when we turn to them. You may not have even realized this. Perhaps they realize we’re struggling before even we do ourselves, checking in on us or encouraging us to open up, noticing our patterns. The chances are, though, they don’t know just how important a person they are to us when we send text after text, rambling away about all the thoughts in our head, which come out in a muddle. They’re probably not aware of how much they help us, even if they worry their replies aren’t too helpful, because just being there for us often helps.

It would be easy for them to run away when someone comes to them a blubbering mess, angry, frustrated, low or all of those things. But they don’t. And for that, we’re so very grateful.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

Follow this journey on The Invisible Hypothyroidism.

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