woman with her face covered by a blanket holding a blue slushie and wearing a hospital gown with iv's in her arm

Dear Madeline of August 2015,

I have so many words for what you are about to feel that I can only give it a general, unspecific pronoun to start: “this.” This will be the hardest thing you will ever endure. There will be times where you’ll think you can’t do it, moments when you’ll want to give up and bouts of agony during which you’ll think you just can’t take anymore. In defiance of those instances, you will get through it. You are going to get yourself through this. There is no magic bullet, pill, cure or spell that will take this away. You are the answer.

woman with her face covered by a blanket holding a blue slushie and wearing a hospital gown with iv's in her arm

Despite your hopes, this will go on. You’ve been sick for four months now and I’m sorry to say that, from where (or when) I’m writing you, there hasn’t been an end to that yet. Doctors will accuse you of faking this, of losing the weight you have lost on purpose. They will label you as a “drug seeker” because the pain will hold you in its grasp with an iron fist and taking medication is the only way to get you through it. Then, they will tell you that you are going to get better. That you will wake up one morning and everything will just be gone. Do not believe them, but do not go through this without hope. The only thing worse than getting your hopes up is not hoping for anything at all.

High school is not middle school. Everyone has said it will be different, and I know you have ignored them, but it’s true. You’re going to find your real friends, and, at times, you may not find any. Coming to the first day of school covered in ECG leads from the seizure you had two nights ago isn’t going to make it any easier. It is a struggle. It is drama-filled. Everyone will think of him or herself first. You’ll find a lot of people with compassion, but when it comes to empathy, your search will come up empty-handed.


Stop expecting perfection from yourself. Your grades won’t be as important as you think. You will be juggling too many things. Your mental stamina will not stick with you through thick and thin, but your intellect will. Regardless of those moments of doubt, you are smart, you are hardworking and you are going to get into a good college. Your college does not have to be the most popular or the most competitive. There are so many things more than just a name.

Most importantly, enjoy everything while you have it. Everything is finite. Soak in the sunshine, eat good food – and I mean good food, because you won’t have it forever. Throw love around like it’s confetti. Spend as much time as you can with your family because this is hard on them, too. Wear clothes because you want to. Dance to the music you love, and don’t be afraid someone is watching. Laugh at least four times a day because that’s the healthy thing to do. Set unattainable goals, because if you shoot for the moon you’ll have to get past a lot of stars first. This will take away pieces of you, but you will pick new ones up along the way. And as always, don’t forget to write back every once in a while, OK?

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A few months ago I saw an online article about Lady Gaga talking about her fibromyalgia challenges. In the photo (from Instagram) she was wrapped in a space blanket and sitting in a sauna, and below it mentioned having a flare-up. About a third of the comments below it were calling her a fake, an attention-seeker, pulling a publicity stunt, etc. As anyone living with an invisible illnesses knows, this sort of response is nothing unique. Except this was in a fibromyalgia forum.

We’ve all had those low, angry moments and had “Healthy Person Envy” and “Recovery Envy.” Celebrities are also targets for jealousy because they have resources most of us don’t. With enough money for specialists and treatments and the ability to outsource cleaning, childcare, cooking of specific diets, etc., at least some patients would be able to return to part-time work or study.

Social media is an amazing support and information network for people with illnesses, but it comes with an aggressive, trolling side. An online post is only a selective snapshot of that point in time. Everyone’s approach to revealing their health challenges differs, both online and in person. For some its every detail, good or bad, some forward educational articles, some celebrate the small victories like going out to a friends’ birthday dinner, some barely mention it.

To be fair, some recent incidents have made people jumpy – a couple of online friends have had photos stolen and used for fake profiles. A lot of research went into making these accounts believable, even fooling other patients who befriended them. This is sometimes referred to as Munchausen’s Syndrome. But it is rare.

In the majority of cases it is just patients attacking each other when they should know better. Because just about every single person living with an invisible illness has had the experience of being accused of attention-seeking, hypochondria, malingering or exaggeration by friends or family.

It’s also important to acknowledge that everyone’s experience of a given illness is unique. Sometimes people who have had milder cases are judgmental of the more severely affected. While it’s fantastic there are patients who got early recognition, diagnosis and responded well to treatment, they are currently a minority. Lecturing people whose conditions are more severe, or those caught in the illness-poverty cycle, that they simply aren’t trying hard enough, etc. creates a lot of ill will.


Some people’s systems are so reactive that even a new vitamin supplement can utterly crash them. A realistic best-case scenario for many of us is a partial improvement, providing we are very strict with diet, supplementation and environment. It doesn’t mean we are cured, or were never that ill. Returning to a normal, average lifestyle is generally not an option.

I’ve noticed a lot of people will post an occasional “this is the real face of _____” photo of themselves lying in bed or in the hospital. Who can blame them? Choosing not to focus on your illness and taking a positive approach can get you accused of being a fake. It recently happened to me after I posted some health links online. Of course this person never heard about it when I was totally debilitated: Instagram didn’t yet exist and at the time I was far too ill to care about the outside world. Too often those who are most affected by invisible illness are themselves invisible.

Being mindful of being triggered and not engaging in this sort of attack on each other is important for two reasons:

1. We all lose credibility. It plays into the hands of those that cast us as attention-seekers and hypochondriacs.

2. We need to focus our energy on facing the challenges ahead. It’s not just a case of getting more recognition of these conditions. Far more people are getting ill, at younger ages.

Although there is generally more awareness of these conditions, it is still a minority of doctors, researchers and patient-based advocacy groups, all having their credibility questioned by the medical and media mainstream. Research is catching up: Lyme (and co-infections), mold toxins, toxic chemicals and genetics are becoming increasingly proven to be part of the story. But it’s still taking a long time for this to filter down to patients.

It is still a widely acceptable medical practice to dismiss physically ill patients as “stressed,” “depressed” or “hypochondriacs.”

It still takes quite a while, and usually several doctors, before most people get a useful diagnosis and treatment.

Some doctors will give a diagnosis, but still believe them to be psychosomatic illnesses.

Failed by the medical mainstream, patients have to research their own symptoms and treatment options, only to be labeled professional diagnosis collectors and drug-seekers.

We are still commonly scapegoated by politicians and cast as welfare bludgers and malingerers.

We have to take each other seriously if we are to expect similar respect from the rest of the world. We need to be a unified front to be able to improve the situation. There is a synergy to a group – we can achieve a lot more than as individuals.

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Thinkstock photo via Wavebreakmedia Ltd.

When we talk about self-care, we often think of bubble baths and face masks — luxurious items that can make you feel relaxed and pampered. While taking the time to relax and treat yourself kindly is important, for those of us living with a chronic condition, mental illness or disability, the best self-care can be a bit more… boring.

“In clinical settings (i.e. working in mental health), self-care has always referred to the activities which you have to do day-to-day, including personal care such as washing, dressing and making food,” Hannah Daisy, a mental health occupational therapist and founder of #BoringSelfCare, told The Mighty. “Boring self-care is just a way of bringing back the true meaning of self-care.”

Like Daisy, who promotes wellbeing-based self-care through her series of #boringselfcare illustrations, this month’s My Mighty Month challenge focuses on not-so-luxurious self-care.

Starting June 1, we’re asking you to prioritize more basic everyday self-care activities. These tasks can include drinking enough water, making your bed, taking your prescriptions, eating a healthy meal and other activities that tend to get neglected when you feel less than yourself.

“When you experience chronic illness or mental health problems, every single task can be a chore and uses up energy,” Daisy, who lives with mental illness and endometriosis, said, adding:

People without disabilities or illness don’t have to think about how to manage the simple self-care activities, they just do it. They don’t have to spend time thinking ‘which activity can I do today, get dressed or make food?’ They don’t feel like they need to rest when after they have done something like doing the dishes or taking out the trash.

As part of this month’s challenge, pick some boring self-care tasks you’d like to accomplish on a daily, weekly and monthly basis. Daily tasks can be brushing your teeth and other personal hygiene items, taking medications and getting dressed. Weekly tasks might include going food shopping, doing your laundry or getting some exercise. Monthly tasks are items you just have to do once or a few times, such as make a doctor’s appointment or pay a bill. If you need more recommendations, check out Daisy’s Instagram for some #boringselfcare inspiration.

“[Boring self-care] is not really boring, it’s essential when you have a disability including mental health problems and neurodiversity,” Daisy explained. “I really want people to recognize the importance of doing these tasks, and that they are achievements, and that they are something kind you do for yourself.”

To help you keep track of your boring self-care tasks, we’ve created a chart for you to log your daily, weekly and monthly tasks. (You’ll need to print two copies of the chart to get you through all 30 days.) Here’s an example of what your chart might look like.

Boring Self-Care Chart

You can download a blank version of the chart here

While prioritizing and logging your self-care, it’s important to remember that missing a day or several doesn’t mean you have failed. Instead of beating yourself up, treat yourself with kindness. Like Daisy said, boring self-care is for people living with health conditions — sometimes our health gets in the way and it’s ok if you can’t get out of bed or meet your goals that day.

Want to make June a Mighty Month? Join us on Facebook at My Mighty Month, and don’t forget to tag any social media posts with #MyMightyMonth. You can also sign up for our weekly email, (select “Mighty Monthly Challenges” from the newsletter options), and we’ll send you weekly emails with boring self-care suggestions and reminders. Don’t need any reminders? That works too. Simply Download our Boring Self-Care Chart to keep track of your progress.

It’s hard. That’s the first thing that comes into my mind as I sit down and try to put this onto paper. I was a “normal” person up until about two years ago. Don’t get me wrong, I’ve had health problems for the last 10 years, but they were all things that could be mended with an operation and medication. Some of the illnesses I had before the angioedema meant lifelong medication, and did cause some problems at times. But I could handle that. I still managed to work and look after my family. I still had my life.

But then one day, two years ago, I woke up and my world changed. When you first become ill, you wait for appointments with consultants and doctors, pinning your hopes on them giving you a medication that will fix you. It never occurred to me at that point that there wouldn’t be a cure for me! It was a slow realization that they couldn’t help me.

I had my first appointment to see my immunologist a few months into this starting. I remember thinking on the run up to that appointment (this was 18 months ago now) that I just needed to hang on until I saw him, and he would give me something to take it away. I left that office in floods of tears. My hopes had been dashed. He was not only very dismissive because he knew he couldn’t do much for me, but he also made me feel like it was nothing. I fell into a low mood. I just couldn’t handle this emotionally at all. I felt so poorly. I needed to get better – I mean, I’m a busy person, I don’t have time for illness! That was a tough Christmas.


I then went into the I’m-going-to-research-and-mend-myself mode. I changed everything in my life, from diet to environmental factors. That all helps for a little while, but I soon realized it didn’t matter what I did. My body was attacking me and no matter what I did, it would continue.

Then the grief cycle started: I grieved for the life I had, the life I still want and miss. Losing my job was something that really crushed me. I’d worked hard for 21 years. I started as an office clerk and had worked my way up to management, only for it all to be taken away, because no matter how hard I tried, I just couldn’t work anymore. You see “friends” disappear, and people give you empty promises. It’s a lonely world having a chronic illness, because as much as people are kind and (sometimes) say the right thing, most of the time you just feel alone. How could I expect anyone who wasn’t living this to understand? I wouldn’t have understood a few years ago. I considered myself an empathetic person, but I laugh now because I wouldn’t have had a clue.

I’m coming up to two years since being diagnosed, and I don’t feel like I’m coping emotionally at all at the moment. I have days where I can be positive and I have a lot of days where I feel angry, sad and sorry for myself. But I’m trying hard to go forward with this now. I’m trying to not let this illness define me. I want to define it! I want to be back in control of my life. I haven’t lost hope that a cure will be found, but I’ve come to the realization that being realistic is far easier on me mentally. So I will give this a bash and see what happens. I can only live in hope that I might finally accept the hand I’ve been dealt.

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Thinkstock photo via Natalia-flurno.

A few weeks ago I purchased my very own walking stick, and today I am going to explain why this decision feels like one of the biggest decisions I’ve made so far in my almost 22 years of life.

There are two major reasons why I got this walking stick. The first being because I do not feel steady on my feet, especially if I have to walk more than a few meters. When I am out this would normally mean I wait in the car or I sometimes use the walls around me to help me balance. My legs are extremely weak and can go numb at any time, so walking is not easy for me. Imagine the worst “jelly legs” you’ve ever had and multiply that feeling by about 20 – that’s how my legs feel on a good day.

I did not consult my doctor before making this decision though because I was afraid he would tell me not to. I was afraid his response would be along the lines of me becoming dependent on it too young. Which is a fair point, but not one I agree with. I am almost nine months into my illness and it only gets worse. My concern isn’t what will make me better because honestly, I don’t know that anything will. My concern is what will make my life easier.

My legs are extremely weak and unsteady, and because I have limited sensation in my feet, it often feels as though I am walking on clouds. They also become fatigued really quickly, and with this they become even more unsteady and are more likely to become numb. Obviously a walking stick can’t fix my problems, but it sure as hell will help me feel more steady when I’m out and about.


The second reason I got a walking stick was simply for confidence. I often don’t go out with friends because I hate walking around in public and I often struggle to voice when I need to rest and sit down. I thought having the stick would make it easier for me to walk a bit more than I would normally. I would also feel safer going out on my own, knowing I would be a little less likely to fall (because yes, I do fall over quite frequently).

I walk at a pace that would have once infuriated me, so I understand when people give me dirty looks for walking too slow in front of them in the supermarket, because on the surface I am just a normal young woman. I will always use a trolley when I shop because it helps me walk, and also I can’t carry more than a few light items. I once had a lady verbally express her frustration at my slow pace and I just stood there mortified and unable to explain to her that I was disabled. I feel like the stick might help minimize people’s frustration and judgmental looks when I walk slowly. It will be the flashing neon sign I need, saying, “I’m not trying to hold you up, I am genuinely struggling.” It will allow me to take my time and not have to worry about looking “normal” in public.

I was kind of embarrassed to admit that half of my reason for wanting the walking stick was so that people knew I was disabled and would take more care before they shove past me on the street. I overcame this though after talking to a few other young people with similar circumstances to me. It’s hard having an invisible illness and sometimes you need strangers to know what’s going on without having to explain it to them. I don’t expect anyone who isn’t in my position to understand this, but that’s OK. I’m not trying to “prove” my illness, I’m just trying to make things a little easier for myself and give me a little more confidence to go out.

So, I have some very legitimate reasons for purchasing my bright pink walking stick, but why have I never pulled it out in public in the month I’ve owned it? I will often put it in my handbag (because it’s a nifty compactable one) and keep it with me “just in case,” but I have yet to use it. The truth is I am scared. It makes my disability too scary and real for me. I know I need it and I know I shouldn’t care what I look like but I can’t help but feel terrified. No matter how much I talk myself into finally using it, I just can’t. I know this is silly but I can’t seem to bring myself to use it.

It’s impossible to think that just nine short months ago I was dancing on a pole, and now I am going to walk with one. How does someone’s life change so drastically in such a short amount of time? It is like I’ve aged 70 years in this time. My pole dancing callouses have faded and have been replaced with knitting callouses. It’s ridiculous how different my life is. I know my life is different but I am still holding onto my outward appearance because if I can fool even a stranger into thinking my life is normal, I feel a little better.

I know I’ll eventually have the courage to use it and when it happens I’ll realize how silly I’ve been this whole time. Until then, I’ll keep doing what I’m doing and hope that, someday soon, I’ll be less insecure about things.

This post originally appeared on Finding Rainbows in the Dark.

Thinkstock photo via apeyron.

As a person with chronic fatigue, each task I perform in one day consumes a great deal of energy. Because of this, I endeavor to simplify tasks as much as possible.

I wanted to shed some light (via the medium of video) onto a very important issue that is often overlooked and minimized: How a chronically fatigued person feels after performing one activity of daily living.


Recently, I ran out of groceries and needed help because I was weak and hungry.

Unfortunately, I was also completely out of coffee. Coffee does nothing for me in terms of bringing up my energy level, but it is a simple daily ritual that I enjoy – and is one of the few things that cheers me.

I called my friend for help. I asked her if she had instant coffee. Her response was, “Oh, I’ll just grind you some coffee and bring over a coffee machine.”

I was about to protest, saying there was a good reason I preferred instant coffee; however, I did not want to look a gift horse in the mouth. She arrived, showing me how to use the coffee maker, and I expressed my gratitude.

The next morning, feeling inspired, I narrated a video containing a sequence of pictures portraying me preparing coffee in an unfamiliar and time-consuming manner.

While taking pictures and making coffee in an unfamiliar way, I began sweating profusely, had to use my inhaler to treat my subsequent shortness of breath and wheezing, then slept for three hours. Despite the fatigue, I got up and edited my pictures into a narrated video.

Generally, editing video is easy for me (physically) because I am seated and relaxed. Standing in the kitchen is way more stressful.

One viewer even remarked she felt tired after watching it. I was overjoyed at this comment because for the first time, I reached one person who genuinely saw my world through my eyes.

I hope you will, too.

Here’s to doing what we need to do to manage our lives!


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