Over the Easter weekend, I saw a meme doing the rounds on Facebook regarding unemployed people and bank holidays. It was a picture of Mark Wahlberg looking confused with the caption: “That face you pull when an unemployed person gets excited because it’s a Bank Holiday.”

I try to take everything I see on Facebook with a pinch of salt, but being the kind of person I am, I do tend to ruminate on certain things I see. This meme was no exception.

I appreciate that it was just a bit of a joke, but it’s things like this that perpetuate the stigma towards unemployed people, particularly those of us who are long-term sick and/or disabled.

Here are a few reasons why it’s OK for unemployed people to enjoy their long weekends…

1. Being unemployed is not a holiday.

I honestly wish it was! It is a full-time job in itself. I’m thankfully in a position where I don’t have to actively seek work as I am deemed unfit; however, that doesn’t mean I get to be a lady of leisure. I still have to pay bills, find ways to pay said bills, fill out endless forms, send off evidence and do day-to-day general life administration. Trying to do all these things is hard work, particularly when, on some days, I can barely make it to the loo and back.

2. I deserve a break as much as you do.

I spend a lot of time in bed. To people who work full-time, I know you’re thinking, “Wow! You’re so lucky!” Nope. Nope, I am not. I am constantly tired and in pain. I am missing out on so much life. I want to be out in the sunshine with friends, I want to be doing the things I’m good at –  putting my skills into something constructive and having financial security so I’m not constantly worrying if I’m going to be able to pay my rent this month or not. Even when I’m in bed, I’m constantly working on making myself better. Weekdays are filled with answering calls and letters, sorting out doc appointments, getting myself to my therapy group, trying to set goals to get myself back to normal, budgeting and figuring out my finances. Weekends are precious to me as well. And a four-day weekend? Even better! I get to relax and enjoy some time off too. Even if the pain is bad, I can go back to bed guilt-free knowing I don’t have to return an important phone call or worry about an unexpected bill coming out of my bank account.

3. I get to see my family and friends.

If I’m feeling up to it, people I want to spend time with are around because they aren’t at work. Even if I’m not feeling too great, I have somebody around to help and support me. I get cups of tea made for me, I get fed properly and I have someone to chat with. Plus, social interaction does wonders for my well-being.

4. Bank Holidays are often because of a celebration.

Easter and Christmas are really important to me, so I always look forward to them. I felt very sad that I was too ill to go to church on Easter Sunday, but I still used the time as a period of reflection and prayer. Plus, I got some little treats and gifts, which always make me feel a bit better!

5. I miss the four-day-weekend feeling.

Even though long weekends can be enjoyable for us “great unwashed,” I do miss the feeling of coming out of work on a Thursday evening and seeing a lovely, long and fun weekend ahead of me. I used to have the money and energy to go and do all sorts of things with my time off. Now I feel guilty if I do anything fun because a) I spend money I don’t have, b) I will get an epic “payback” day and c) I’m worried people will see me and think, “Oh, she can’t be that ill if she’s out enjoying herself!”

Being unemployed isn’t fun and frolics. It’s a period of time for people, like myself, to try and get their lives together in a way they wouldn’t be able to do if they were in work. I know of those who have been desperately trying to get back to work, but it’s just not happening for them or others who have had to quit work due to ill health, and they would do anything to be back in a job. I appreciate there may be some benefit claimants who are living the life of Riley and know exactly how to play the system, but a majority of us aren’t like that.

We’re just working hard in a different way and still need a break once in a while.

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Thinkstock photo via Mima88.

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I often get asked how (and why!) I do what I do. I’m a homeschooling mom of two boys (ages 10 and 11). We chose to homeschool because our oldest son has chronic lung disease and often has a compromised immune system due to treatments. He also has many anaphylactic food allergies (milk, egg, peanut, tree nuts and seeds) and homeschooling just made sense. His anxiety at school was often high and he also missed a lot of school due to being hospitalized from respiratory illnesses.

On top of being a homeschooling mom whose primary goal is to educate and care for her children, I have a lot of illnesses as well. I have a spinal disease that is degenerative and causes me to need chemotherapy each week.

Having the kids home actually relieves my stress in some ways. I am not constantly worried about if my oldest son is behind in class due to weeks of absence. I don’t worry daily if he’s safe or being exposed to an allergen. I don’t wait and pace by the phone all day expecting a call from the school nurse.

Homeschooling through chronic illness requires balance and strategic planning. I have chemo on Friday so that I have the weekend to deal with illness and side effects in order to be ready for the school week on Monday. We finish our school work in a few hours each day and I don’t have to pull my son out of class when he needs to go to the doctor. I can more freely schedule appointments for him knowing he isn’t falling behind or missing out on something at school.

I find this lifestyle can be stressful in other ways, such as the fact that I don’t have an education degree; rather, mine is in psychology. I have realized that school and learning are so individualized, though, that I feel teaching both of my boys at home is more personal and relates more to their individual preferences.

Is it tiring? Sure. Am I exhausted? Yes! But, I’ve also found that my depression and anxiety are somewhat alleviated and I find that I’m a lot more motivated now than I used to be. I don’t know how long I’ll teach my boys this way or how long I’ll feel like I can keep up with the fast paced routine we have, but I know that right now it’s what is right for us. I love seeing them grow and learn every day and we are enjoying our time at home together.

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Thinkstock photo by Vstock LLC


When you’re coping with a life-altering illness, sometimes the little things take on more meaning and significance. Taking a shower, meeting a friend for coffee, or getting through a difficult doctor’s appointment can all be proud accomplishments when you’re also dealing with the pain, fatigue and stress of your illness — and they all deserve applause just as much as the accomplishments of someone without a chronic illness.

We want to celebrate the “little victories” that happen in life with chronic illness, so we asked our Mighty community to share the things they’re proud to accomplish. No matter how “big” or “small” your victories seem, you have every right to celebrate what it took for you to accomplish them.

Here’s what our community told us: 

1. “I can now walk around the block four minutes quicker than when I started having issues with my legs. It’s a quiet yet exciting little victory!”

2. “Getting through the entirety of an event, activity, or day. It’s so empowering to know I made it through and that positivity carries me through many days afterwards while I recover.”

3. “Making a plan with friends being able to stick with it. Hate canceling, but when you know your spoons won’t last, even with borrowing from next few days, you have no other option.”

4. “The bowel movement, last night, that means I get to leave the hospital today. Several of the nurses came into my room for a mini celebration. But really, in my day-to-day life, a BM is still cause for celebration.”

5. “Getting any part of my house cleaned up is a little victory — even if it’s just cleaning off the dining room table — but it makes me feel good. There’s nothing quite like being too sick to clean your house and having to sit there and watch it get dirtier and messier and you’re powerless to do anything about it.”

6. “A little victory for me is leaving the house and being able to meet a friend for coffee. I’m always really pleased with myself when I get out and have a treat.”

7. “Any day that I can look at my endless to-do list and actually make myself cross one off is a huge victory. If I can get more than one done in a day, then I feel like I’m on top of the world.”

8. “After a year of bursting into tears after every GP appointment, I found one who listens, believes me, tries her hardest for me and never suggests I’m going mad! A supportive GP has made a world of difference to how I manage the other multiple problems and many specialists.”

9.Working out three or four times a week. Every one I do is part of the bigger picture I’m working towards. It’s mind over matter most days. Yesterday I celebrated a victory that I could jog for .25 of a mile without stopping. I’ve been working on that.”

10. “I’m always really proud of myself when I make my bed (like actually put my throw pillows on it and everything), when I get my steps in for the day, or when I do some tasks that ‘normal’ people take for granted (like making it through another doctor’s appointment or getting grocery shopping done.)”

11. “One of my greatest victories is actually when I gather the courage to talk to my closest friends and family about how I really feel. Throwing away that mask of fake bravery and positivity and just putting it all out there so they can understand me better. Cry together with them. The sense of relief afterwards is overwhelming.”

12. “When I was first diagnosed with lymphedema, my left ankle and foot swelled up so big I could barely put on a shoe. Now, with proper treatment and upkeep, not only can I wear tennis shoes, but sometimes even cute heels! It seems trivial, and I can only wear them for a couple hours at a time but hey… who wants to wear heels for more than a few hours, anyway?”

13. “When I can wake up in the morning, hear my daughter singing from her crib, and get up to get her without having to ‘pop’ every joint back in place, stretch for 20 minutes, hobble to the cabinet to take a pain pill, then go get her. I cherish the days I can move freely!”

14.Getting my laundry put away the same day I wash it. To do my laundry I have to go from my second floor bedroom to the basement. Then back up and down to the basement to move the clothes through the laundry steps, and finally up two flights to my room. Some days, if I’m really lucky I can get two loads of laundry done on the same day.”

15. “Being able to actually style my hair and fix my makeup! Usually, if I’m actually going somewhere, I have to choose between the two and just do the bare minimum.”

16. “Going to all my uni lectures in a week because often I’m so exhausted and fatigued that I struggle to make all of them so I’m really happy when I do make them all.”

17. “The other day I was able to cook dinner for my family and I was so happy… it was emotional. These small moments and improvements get me through the days.”

18. “Something as minor as getting out of bed and getting dressed. Some days I just stay in my pajamas all day as I’m too exhausted to even have a wash.”

19. “Putting on my own socks. I had hip surgery where I had 20 tumors removed, and for months and months I was on severe hip precautions to where I couldn’t bend down. There are days where it is still too hard to bend down, but the days I can… are really good days for me.”


I look like a well balanced 18-year-old on vacation. My dad took this picture of my on our recent trip to New Orleans. There are many things that must happen before I am ready to present myself to the world. My backpack hold my drain bag of urine, and a tube runs from my belly button under my dress and into my backpack.

girl standing under large tree

My dress also covers my Pull-Ups. It’s a large place of embarrassment for me. My jagged scars, lines that didn’t come out straight and healed into rounded paths that run across my torso.

Every day could be judgment day for someone who has a hidden illness. Why do you wear your pajamas in public? You don’t deserve to be here. Why can’t you be a “normal” functioning person? Can you hide your bag behind you for the picture?

I just started to notice the ableism in my life. The backhand comments, the looks, the ways I’m told that I’ve missed too many days to stay at this school.

People see it as privilege, the ability to get out of going to school and being exempt from school work. Sleeping during the day. All of these things sound nice, but after awhile you wish you could run with the rest of the crowd. I would take consistent and full-length school days over doctor appointments, IV infusions, therapy appointments because of “medical trauma,” and hospitalizations. I’d rather be well enough to do the work than get out of doing the work because I’m too sick.

I look healthy, I am relatively healthy (in terms of things). But, there are still days that I have to sit out, from doctor appointments to pain.

A comment coming from an able-bodied person about a non-able-bodied person, is so often judgment. So, next time you see a child acting out, don’t stop and stare, don’t complain. Keep walking because you don’t know their story.

Or next time you see someone who always falls asleep in class, don’t assume they’re lazy, don’t assume they’re irresponsible. Because you don’t know their whole story.

Don’t laugh at people for their differences, don’t assume, don’t judge.

There are so many positive things you can do:

Make sure someone isn’t falling behind.

Make sure someone is safe.

You can turn your act of judgment into a positive action that will help someone instead of hurt them.

A picture may be worth a thousand words, but that doesn’t mean it tells the whole story.

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Emotional pain is like a summer storm. As you’re enjoying the warmth radiating from the sun, a dark cloud-covered sky arrives and indicates what’s about to come. Lightning strikes. Thunder claps. The earth shakes. And you scramble to find shelter to keep yourself safe. Pain often works the same way. It’s unpredictable, damaging, and springs upon you when you least expect it.

A year ago today, April 2016, was when I experienced one of my most painful periods and deepest lows to date. Just like a storm, this period of my life left a mark — one that I have not been able to shake.

I had been hospitalized for another illness, but this time, it took a huge emotional toll on me. Over the past couple of years, my health had taken a steep decline as my disease progressed rapidly. I lost the ability to speak a single sentence without feeling winded. The energy it took just for me to speak affected my life greatly as my body was working in overdrive to do a simple, daily task. I was exhausted both physically and mentally and somehow coaxed myself into thinking that the next time I was to get sick would be my last.

I cried every single day in that hospital bed. I was irritable. I was in physical pain. I had tubes all entangled in me making me feel uncomfortable. Worst of all, I actually felt sorry for myself. I wondered what was even the point in trying. I was just so beyond tired of fighting.

However, several days into my stay, my SMA critical care specialist walked into my room, his eyes wandered around, and he spoke the most simple, yet powerful, words that suddenly changed my perspective. (To this day, they still resonate with me.)

He looked at me and said, “I know this isn’t fun. You’ve been sick for awhile, haven’t eaten in days, and have a really uncomfortable tube up your nose and in your stomach. But, it’s 2 p.m., and it’s pitch black in here. Let the sun shine in. It’ll make you feel better.”

He walked to the back of my room, threw open the shades, walked back to me, and said, “I know this isn’t where you want to be. I get it. But, I also know how strong and stubborn you are. So, promise me you’ll keep those shades open, and I promise you’ll be out of here soon.”

My doctor was right. I was strong (and stubborn as hell), but I had somehow allowed circumstances that were out of my control to control me. For the first time in my life, I felt like a stranger in my own body. I wasn’t that girl nor did I want to be her. And, as the sun began to radiate into the cold, dismal hospital room, I began to feel lighter — a shift of energy began to take place. That was the moment I realized my thoughts and feelings needed to change. I needed to stop playing the victim and start recognizing the resilient power I had hidden inside of me.

Of course, it’s important to let your negative emotions ride out. Scream, cry, feel sorry for yourself, and just plain ol’ hate life. Be bitter. Be angry. Be anything you feel like being because you’re entitled to feel whatever it is you want to feel. But, I think there comes a point when you have to realize that these emotions you’re feeling are not in control of you. Instead, you are in control of them. Knowing this, I came to realize from his advice, is the foundation for overcoming any and every “storm” of life.

Storms, just like pain, are messy, but that’s just their nature. They wreak havoc, cause destruction, and do everything in their power to destroy what once was. Every now and then, getting caught in the middle of a storm is a fact of life, but fortunately, storms don’t last forever. The raindrops will taper, the clouds will begin to part, and the sun will start to shine again. Only then will you decide to rise above those negative feelings.

And, only then can you decide to open the shades and realize you are strong enough to let the sun shine in again.

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Thinkstock photo by LucidSurf


 

The dictionary defines the word “relationship” as “The way in which two or more people or things are connected, or the state of being connected.”

I, like many people in their mid-20s, have had a few groups of close friends, and some that naturally grew apart. My relationship with my friends began after starting university, and has developed during the years since.

This “close” friendship group had supported each other and developed or changed to include some of us traveling, some moving away, and even a couple of kids. We were friends first on common ground — we liked the same music, same dingy clubs and pubs, shared views on most things, and for those we didn’t, we enjoyed hearing the other’s opinion. In others words we were able to relate to each other — pretty witty, yes?

In addition, I am the kind of person that would do everything in my power to make others happy. I am naturally a people-pleaser. In the past I’d happily go along with or often facilitate or organize a large chunk of the social events within my circle.

The last couple of years have been hugely difficult for me personally. My journey to diagnosis and trialling treatments has been a rocky one. My chronic illnesses for has made the cracks in our foundation evident in a way that not even arguing over pizza toppings could. I have grown apart from a couple of my previously closest friends. Other members I have grown closer to, but in a “we avoid talking about your problems” kind of way. I have also found solace and formed new and sometimes distant friendships with those living with health issues of many kinds, in other words people I can relate to in my “now.”

Those I have grown apart from, the “closer ones” I could blame on my inability to socialize as often or reliably as I once could. Or I could blame my comparatively quiet days and the result being I miss out on events such as festivals or nights out.

But it’s all that and more.

Chronic illness has taken over every aspect of my life. It has slowly but surely impacted my very being. There are the more obvious such as not being “fit to work” at present, meaning I’m reliant on my partner and family. I don’t have the income to join in costly events of my working friends. I cannot always leave the house without significant distress or difficulty, which makes socializing more complicated. The unpredictable nature of my illnesses mean I am not always able to commit to or honor plans with my loved ones.

And if I’m being totally honest, I sometimes just don’t feel like it. Sometimes my overwhelming fatigue and pain make the idea of leaving the house about as attractive as a dental appointment. Sometimes I just want to sit and read or try to relieve some of my symptoms with stronger painkillers and a hot bath or blanket fort.

The reason the above is important is because unless you have experienced a long-term illness or condition, it makes it hard to comprehend or sympathize with on a long-term basis. It is something solitary in my group of healthy friends. Sometimes my pre-emptive decline of offers which are beyond my realms of reality at the moment have caused bad feelings — more so than those I have broken my commitment to at a later date. Some conversations have resulted in arguments as my friends find it hard to relate to my situation. They now find it hard to relate to me. They have admitted suspecting I am using my conditions as an excuse to not want to partake in something or as a reason to see them. In other words the lack of ability to relate to my situation seems like a personal thing for them. They may feel tired, stressed or a bit off, yet they are still always able to make plans, so why can’t I make the effort?

Because “I can’t” is a viewed as wobbly “excuse” from the outside looking in.

Maybe on occasion I would have agreed with them if I was sitting on the outside.

Maybe.

Living with chronic illness and maintaining relationships can be a minefield. And in my experience I have spent a long time dodging ammo, desperate to explain or defend myself, and make others view me in a positive light. It’s exhausting, and unfortunately on the whole not that effective. The change in me has made it harder for others to relate to me. I wholeheartedly feel this is the root of the issue. And this is the one thing I cannot change. My life, body and mind have changed. Some changes obviously are for the worse, but others maybe for the better. I have learned more in the past few years than I ever thought possible, learned to respect my own needs and others’, and also developed an understanding of the fluid nature of life. Yes I’m down at the moment, but the small “ups” such as enjoying a coffee out the house now seem so much sweeter. My world may be tons smaller, but it’s also more real for me.

Please try to remember if you are in love, friends with or a colleague of a some living with chronic illness, you may feel the impact of their illness acutely. You could feel disappointed, frustrated, angry even, but believe me when I say the one living with the illness feels this chronically. Probably every day.

I ask if you cannot relate to it, just to let it be. Please don’t add to the burden of guilt and sadness by poking and pulling at the person in question. For me personally it’s taken a huge chunk of time and tears to realize that although I would never have chosen the decline, that actually it’s OK. If we cannot relate or empathize then maybe the relationship may also need to take a break or step sideways. It doesn’t mean the love isn’t there. And if you are part of a relationship that has endured the challenges of chronic health issues, I have nothing but respect and admiration for that.

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Thinkstock photo by Thomas_Zsebok_Images

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