Doctor and Patient Discussing Medication

I had at epiphany at my last doctor’s appointment. Sitting on the cold, crinkled paper covering the lumpy bench, I was in awe that my neurologist was actually addressing me. He would usually only speak to my mother as opposed to asking me questions directly. He asked me how I felt after my last round of testing, and as I started to respond, he walked straight out of the room. I was in absolute shock at how little this person who was supposed to be helping me cared about my opinions regarding the state of my own health. In this moment, I realized what I was missing.

It is time that patients are seen as people. We deserve to be treated as humans, not lab rats or experiments. Many doctors see patients with invisible illness as a challenge or a puzzle. They want to find the problem regardless of how they do it, claiming the ends will always justify the means. What the are ignoring is that there are complex, beautiful lives behind their patients. We have families, friends, jobs, loves, and passions. There is more to us than our illnesses, and it is insulting to only be seen for them.

Of course we want to find what will help us live happier and healthier lives, but our doctors need to recognize how exhausting our realities are outside of the doctors office. The endless appointments, the waiting for test results, the good days and the bad ones, the pain. And this only covers the physical component. There is also the mental isolation, the overwhelming confusion, the lost friendships, the never-ending FOMO (fear of missing out) from checking social media in a pain-induced haze. And that’s the part many doctors fail to recognize.

Don’t get me wrong, so many doctors and researchers do so many amazing things for the chronic illness community. Without these pioneers, I probably wouldn’t be writing this. There definitely wouldn’t be a forum like The Mighty. But we need to stop treating invisible illnesses like riddles to solve. We need to stop ignoring the people underneath the diagnoses. We need to continue down a path of understanding and compassion.

So, to all the doctors brave enough to conquer the task of helping patients with chronic and invisible illnesses: ask yourself how you would want to be treated if you were in our position. Because, just like there is more to you than being a doctor, there is more to us than being a patient.

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“I had to follow a diet like that before. The weight just fell off me.”

I was chatting to a waitress about the medical nutrition plan I was on for my condition. She was lovely; extremely friendly and genuinely curious about my condition, which is refreshing when you are usually just perceived as a “high maintenance” customer. I knew it was a casual, throwaway comment. She meant nothing malicious by it. She was not implying I needed to lose weight.

I felt like I had been punched in the stomach.

A side effect of my condition is that my metabolism doesn’t function. I have been trying to lose weight for several years. Despite an extremely healthy, nutritious diet completely devoid of refined sugar, processed food and junk food, it is a struggle just to maintain my weight.  I am on a strict nutritional plan for my stomach problems, and while the treatment is focused on improving my chronic fatigue symptoms and stomach issues, I would be lying if I said I wasn’t frustrated that my weight will not decrease despite my lifestyle. Conversely, it often increases for no discernible reason.

Needless to say, this has affected my relationship with food. Food has become a source of anxiety. I follow my nutrition plan to the letter because I want nothing more than to get better, but I am also terrified that it will make me gain weight. I’m afraid of eating eliminated foods and triggering a stomach flare. I’m constantly self-conscious, railing against a body that is letting me down in every way. I fight a mental battle every meal, between two voices screaming “I have to eat this to get better” and “If I eat all this food I’ll gain weight.”

The casual comment that the waitress made that day was a reminder to me that my body doesn’t work. That it doesn’t respond to food and lifestyle changes like everyone else’s. My weight is an aesthetic indicator that I am sick, that doctors don’t know what is causing it and aren’t sure how to treat it. My body image issues have spiraled, becoming an external marker of my invisible illness, a projection of the frustrations of chronic illness.

My condition means that I can’t work, that I find it difficult to have any kind of social life and that I feel as though I have lost all control of my life. Yet the symptom I focus on the most is how it affects the way that I look. I feel as though this is something I should be able to control, and my failure to do so echoes the helplessness I feel about my health. It has become a disappointment that I see every time I looked in the mirror.

I was terrified to admit I had a problem with food. I didn’t want to add another condition to a list of symptoms that already felt overwhelming. I was afraid people would think I had caused my condition through my attitude to food (even though it long preceded my food issues). I was also concerned that I would have to stop my treatment. While the stress of the rigid plan and of constantly analyzing and calculating calories and nutrients was affecting my mental health, I was also petrified of losing that structure, and the hope that it could help me.

I have a long way to go. I have to learn to balance my physical treatments with my issues surrounding food. I must find a way of nurturing both my physical and mental health. I need to accept my body as it is, and focus on getting it physically healthy rather than on how it looks aesthetically. I know this will take time. I wish this was a post on how I overcame these issues, but really this is about how I have only just accepted it. I’m still trying to fully process it and all the different ways it affects my life.

There is only one piece of advice I can give – if you think you need help, don’t be afraid to ask for it. It was tough to admit I was having problems with food. My therapist is working with me on my psychological attitude to food. My doctor altered my treatment plan so that it is not as emotionally draining but should still help my condition. I found it hard to say that I needed help, that I was struggling. Acknowledging it meant I had to deal with it, and honestly I was already exhausted from coping with my chronic illness. It was only after I opened up and sobbed and raged and felt the weight lift off my chest that I realized how much it was affecting me. Like any recovery, I have good days and bad days. Some days I feel fine, others it’s completely overwhelming. I know how scary it is to deal with, but you’re not alone. Don’t struggle by yourself in silence.

I know it will be a long road to recovery, but I don’t have to walk it alone. And neither do you.

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Thinkstock photo via LucidSurf.

Flare-ups make me very secretive. I isolate myself from all those I love. Asking for help burns like defeat. I’m awed by the people who can ask, but I simply have too much hubris — and perhaps that’s why I write. A large audience seems less intimidating than my dearest friends. It’s absurd, right?

I have a theory why I believe it might be easier to deliver this to a large audience, because I’m not asking a specific person, because I’m not taxing any individual. We chose what to read, fishing each article from a sea of stories. Friends don’t really choose to listen — they do just because they care, and maybe that’s why even the thought of talking to them about my illness makes me cringe. I’m afraid my illness and the needs that it creates may turn me into a burden. I’ve spent the last four months jumping between what I should and should not share with them — and wishing I had the courage to say these few things:

I love you and I worry about you. Tell me about your trials, your difficulties — I’m here to listen. Don’t be afraid that because I’m suffering, I can’t handle your bad days — or beam because of your successes. Tell me when you succeed — don’t stifle your joy around me. My heart is still well, even though my body may not be. Please, just keep being yourselves — I’m not fragile. I need you to be yourselves.

I’m grateful for your offers of help, but I want to handle things on my own. I’m fiercely independent — and right now, accepting your help feels akin to giving in to the fire in my veins, and I fear it will turn me into the burdensome beast that I distain so much. I know this may sound bizarre to ask, but please, don’t stop offering to help — teach me that I can lean on you, without being a burden — but also, accept when I say “no” — I know myself best. When I do admit that I need to accept the offer you give, it takes all the courage I have.

I know you feel alone. I feel alone too. I know that senior year is hell, I know that final projects are torture, and I’m well aware of the stress it causes. You are not alone. Take care of yourselves, as you’ve been taking care of me. I need you to stay well. You’ve been fighting so hard to get through the year, take a break for a moment, and just have fun. Drink tea, dance in your room, scream, watch silly movies – don’t work and worry yourselves to death. You’re not alone. Let me say this again: no matter what, I’m here for you, I love you.

Lastly, be teenagers. Hang out. Go on adventures. Leave me behind — and don’t be afraid of it hurting me — the stories of your escapades are enough. Remember to live, and feel the cool, crisp air in your lungs, and sing. I’m here to listen to your vivacious song.

I’m excited to see where you’ll go! The world is our oyster. Claim it!

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Thinkstock photo by oneinchpunch

Having a chronic illness and being a parent can feel like you’re being pulled in two different directions. You’re forced to balance the physical demands and limitations of your illness with taking care of and spending time with your kids. It’s a juggling act that can have profound effects on kids and parents — both positive and negative.

We asked our Mighty Facebook community to share the truth about being a parent with a chronic illness. While many parents reported feeling guilty for how their illness affects their kids, they also reported watching their kids grow into compassionate, patient human beings as a result of watching their parent’s battle.

Here’s what the community told us:

1.It’s simultaneously my savior, the reason I get up every day despite the pain and fatigue, and the dark shadow reminding me that I’ll never be that healthy mom who goes to every event, or runs with him in the park. That some days, weeks or months in the hospital without him are often times more painful than the flare itself. Parenting is hard on top of chronic illness, but I’m so grateful that I have him to keep me grounded, I don’t know what I’d do without that love.”

2. “They keep me going. However, they exhaust me too. Most days I feel like my health cheats them out of having a mom like their friends have. I spend a lot of time doubting myself as a parent to my kids. But no matter how I feel I always get back up the next morning and do it again.”

3. “I always feel guilt. Guilty when I don’t feel well. Guilty when I do feel well but I’m worried about rationing my energy waiting for the other shoe to drop. Lonely. You can’t plan ahead for a hard day when symptoms will be bad, it can just be there when you wake up, or it can hit you halfway through the day without much warning… However, I’m raising compassionate, flexible, loving people and their capacity for unconditional love is bottomless. I can only hope that their experience with a chronically ill mum allows them to shine that compassion out into the world as they grow. It will be the one thing that makes this worth it.”

4. “I feel like my boys are missing out on fun and normal. I know they don’t like to see me sleeping or laying down. I know they get tired of me saying I’m tired… At the same time, they help me so much. They push the grocery cart, carry things that are heavy, and always seem to know when I need a hug. Mostly, I feel sad for them. And sad for me. It’s hard to miss out.”

5. “It’s horrible and exhausting and hard at all the same time! But now later in life seeing how sweet my sons have become! How much they care! And what wonderful men they will become because of the life they have to live with there mummy being so sick and tired all the time.”

6. “My son shows me so much love. Even at only 5 he is keenly aware of how I’m feeling and will tuck me in or get a drink if need be. He’s my greatest reason to continue fighting.”

7. “I struggle with the idea that my daughter is growing up helping me with things, and even taking care of me at times, when I’m supposed to be the one taking care of her. Ever since she was a baby she’s visited me at the hospital, it’s normal for us to be looking through old pictures and see ones taken in various hospital rooms… She’s helped listen to my heart, take my blood pressure, even draw blood with a syringe from a port in my arm with my nurse. I worry that with all of this she’s less of a kid, or I’m cutting her childhood short. My daughter is set on being a doctor when she grows up.”

8. “I’d like to think that being the child of a parent with a chronic illness has helped my children. I think that they’ve had to learn more about compassion, patience and what love truly means. It means that ‘stuff’ is never more important than the time we spend with each other. It means that the calendar is just a piece of paper with numbers. Sometimes the birthday dinner we are having happens before or after the real date. You’re careful with your words because sometimes when you’re not feeling good? It comes across wrong. So you also learn to say I love you, I’m sorry, thank you, and forgive me.”

9. “Having my son helps me to focus on him instead of my pain. I will push myself a bit more to be there for him. Sometimes I feel guilty when I can’t do the things that I want to do with him but he hugs me and says, it’s OK, you’re an awesome mom.”

10. “It’s not easy on them and I know that. They have sacrificed a lot in their young lives that kids with healthy moms have never had to think about. They have never know what it was like to have a mom who was able to rough house with them, or had the strength to carry them every time they asked… But on the other side, they are my daily motivation to continually fight my illness. To try everything in my power to give them the best memories they can have with me possible because in the end that is all I can do.”

11. “Hard! But worth it! Beautiful and sometimes not. My reason to live, my reason it’s all worth it, plus the most amazing considerate empathetic human beings are my children and I can’t wait to see what amazing adults they become and my pain I believe has in a way crafted them into more understanding compassionate people.”

12. “My girls have learned great work ethic and independence. They saw me as a single mom provide for them even when I could barely walk and having a back surgery almost every year for 15 years.”

13. “Being a parent with a chronic illness is living with the fear that you are not physically and emotionally present enough for your child(ren). Being a parent is also why I wake up every day and continue to fight even on the days when getting out of bed is the only thing I can accomplish that day.”

14. “Good and bad. Some days I wish I had the strength and energy to do more, especially because I have a 4-year-old boy. Other days when I have more energy, I try my best to do most of what will bring him joy for that day. It’s tough.”

15. “It is amazing to see the pure innocence and empathy of children. When they know you are hurting or ill and they try to take care of you by bringing you blankets and pillows, or giving you their favorite stuffed animal to ‘help you feel better.’ It is truly a heartwarming thing to experience.”

What is it like being a parent with a chronic illness? Share in the comments below.

Thinkstock image by Sasilstock

To the teachers of my high school career, as well as those to come:

No, I’m not faking this in hopes for attention. No, I am not exaggerating in order to get out of coming to school. My illness may be invisible, but it is very, very real.

Yes, I desperately want to be in your class every day. Yes, I wish with all my heart that I could complete all the work you assign in the time frame you want. But that is not always possible.

No, I do not want you to think of me as “the kid who is sick.” I want to be treated the same as all your other students, in addition to being treated with empathy. That is something all your students deserve regardless if they are in a position similar to mine.

Yes, it deeply hurts me when I can tell you do not want to put in extra time to work with me. On bad days, I have to put in twice the effort, and to see you put in half makes me feel like I am not worth your time or effort. I am not a lost cause.

No, when I am not in school I am not watching TV and relaxing. While I might be on the couch, chances are my symptoms are either past the point of tolerable or I am attempting to do work for your class, regardless of how much my vision blurs or how much me hand shakes as I try to write.

Yes, it is a mistake to underestimate me. The inner strength I’ve gained through this journey is what I am most proud of. I am resilient. If I tell you I can do something, believe me. I am trying harder than you know.

No, I do not expect you to understand what I’m going through. However, I ask you to be sensitive to my situation. I know you want me to catch up and be in class, but remember that I want that even more than you do.

Yes, I got into my dream university despite the challenges I’ve faced. To my teachers who doubted my abilities and my integrity, I hope that I will serve as an example to you not to think less of students with invisible illness. Our strength is our superpower.

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Thinkstock photo by Mariemlulu

Today was just an average day.

I woke up, exercised, got dressed and went to work. After work I got home, had dinner and went to bed to do it all again the next day. Sounds normal, right? However, if I said to you I only work five hours per day yet still seemingly achieve so little, what would your response be?

“What do you do with all that time?!”

Today was just an average day.

I woke up, took my medication, did my physiotherapy, showered, got dressed, and went to work. After work I came home, had dinner, took more medication and went to bed.

“I wish I had all that time in the morning to do whatever I liked!”

Today was just an average day.

I woke up at 10 a.m. — I slept through my alarm. I couldn’t get to sleep last night as I was in too much pain. I peel myself out from under my sheets and, bleary eyed, swallow eight different pills and three different liquid medications. I run to the bathroom, feeling sick to my stomach, I involuntarily throw up undigested food from the night before. I am in so much pain, so exhausted I wonder how I will survive the day. I pull on my trainers and my workout gear and grit my teeth through physio. Half asleep I climb into the shower, the prolonged standing up nearly makes me pass out. Legs purple from blood pooling, I get out the shower and lie down until the room stops spinning.

I throw on my clothes and attempt to eat something, energy feeling like a distant memory I go to work. I work for five hours, always on my feet, always on the ball, always trying my hardest. Always exhausted. I get back home, fall through the door and slump on the sofa. I manage to climb up the stairs to change out of my work clothes. Head pounding I find something to eat. I then take another 10 pills and climb under my sheets. Head spinning with thoughts from the day I slowly drift into the abyss.

“You’re so lucky! I wish I could have a lie-in!”

Today was just an average day.

I got called lazy, received judgmental looks when I said I was tired after a five-hour shift. I watched bemusement cover people’s faces as they couldn’t fathom why I was so exhausted all the time. I only work for five hours right? The thing is, that is five hours on a normal person’s clock. One waking hour for a person with chronic fatigue takes the equivalent energy as at least four hours does for a healthy person. Imagine working for 20 hours straight with only four hours sleep in between. It is like everything happens in slow motion whilst simultaneously flashing you by. Hours take the energy of days yet what happened two minutes ago is already nothing more than a fuzz in your brain. You feel like you’re constantly on the go and can’t understand where all the time has gone.

“I am tired, too!”

I am not just tired. If you are tired you can sleep a little longer and shake the feeling off. With chronic fatigue I don’t have ability do that. No matter how much you sleep you can’t shake the cloud of exhaustion that covers you every day. You fear for your future, you can barely afford to survive as it is, what if it just gets worse?

Next time you say to someone with chronic fatigue that they are lucky for having so much “spare” time just remember this one thing: We have fought so hard to be able to work in the first place. Please do not belittle our success.

Today was just an average day. 

A day people didn’t understand.

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Thinkstock photo by cyano66

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