woman and her husband at a concert

To the Beautiful Pharmacy Tech Who Belittled Me Then Hit on My Husband


To the beautiful pharmacy tech that hit on my husband,

You don’t know me. I am only one of presumably thousands of your customers. You see us as people who are sick, who are unwell and you look at us with disdain. I saw that in your eyes tonight. What I also saw was more hurtful and destructive than you’ll ever know.

 

You see, I’m disabled. I have severe spinal problems that are exacerbated by my fibromyalgia. Today, I could barely walk. I wouldn’t actually even consider it walking. It was more like a very slow, very painful, inch-by-inch shuffle. It took me five minutes to walk 20 feet from my door to our gate. That’s four minutes more than it usually takes me on a good day. But, today was not a good day.

Today, I was barely able to put pants on so I could leave the house and go pick up the prescription from you. I didn’t eat much. There was no “comfortable position.” Sitting, standing, lying down, moving at all: pain. It wasn’t a low level, either. It was hovering just before tears. If I get to the point of tears after an all-day episode like this, that’s usually coupled with a complete inability to move my legs and it means it’s time for me to go to the ER. But, you don’t know any of this. You just work there.

When I got to the pharmacy counter, my husband had already grabbed what he needed and was waiting on me. I gave you my usual information and, in the middle of it, you touched your necklace and top button, gasped, and told my husband you “admire” his tattoo. He didn’t notice your flirting, but the way you pivoted slightly, looked him up and down and bit your lip were more than significant enough for me to notice. That wasn’t, unfortunately, the only thing that happened.

When you continued to speak to me, you first looked me over and scrunched up your nose. You then began to rapid-fire questions at me, not letting me finish each sentence before cutting me off. You began to wear a bitter smirk on your face while refusing to make eye contact with me, but continually looking at my blissfully unaware husband. As we were leaving, my husband asked me why I looked upset.

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I informed him that, to me, it is beyond unprofessional when you have a person depending on your service in front of you and, instead of giving them your professionalism, you hit on their husband and then proceed to treat them like they mean nothing. He, of course, was surprised. He hadn’t even noticed. I explained what each thing that happened was and then told him I’m getting tired of it.

I’m getting tired of women like you who are beautiful and educated and “above it all” coming into my life in some way, looking me over in sheer judgment, lacking completely in compassion and empathy for anyone but yourself, flirting with my husband in front of me and then treating me with such disdain as though you cannot, for one second, fathom why such an amazing, handsome, intelligent man would be with someone the likes of me.

woman and her husband at a concert
Me and my husband at a concert

I’m getting tired of women like you, who act impulsively and with disregard for others, making me ask the same question.

I know the answer. I have since I met him. But, it isn’t any of your business. It isn’t any of your concern. I’m at the pharmacy to pick up medication that is actually going to help me in some way and I need you to do what you need to do. Giving me my prescription is your business. Your job is not to belittle me when I’m alone or when I’m with my husband. Your job is not to display a lack of professionalism by hitting on my husband before you belittle me. Your job is not to make me question my own value. I don’t know if you are even aware of what you’re doing.

There are so many who are so much more sick than I will ever be. I have witnessed how you treat me. It still leaves me asking one question.

How do you treat the people who are sicker than I am?

I hope you learn soon, miss, to stop doing this to the people counting on you. I really do.

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woman standing on a fjord in norway

Finding a New 'Happily Ever After' With Chronic Illness


Who would have thought a simple television show could bring up so many feelings, emotions and realizations about life. It all started with Disney’s “Fairy Tale Weddings” special. As soon as we turned it on, I had a feeling this was going to be a bad idea, but we kept watching anyways…

That was supposed to be me. I was supposed to be the one having my dream Disney wedding. I’m the one who has been dreaming about it and “planning” it since I was little. Growing up Disney, my family made multiple trips to Disney World and we watched Disney movies. Disney movies filled my head with tales of adventures, magic, the power of believing in yourself, your dreams and “happily ever afters.”

 

I was so sure that a Disney Wedding was going to be part of my happily ever after. I was so sure I’d graduate college (which I did) and start a career (never going to happen), get married and have kids. I so badly wanted to have kids, teach them how to dream, believe in themselves and for our whole family to do Run Disney events together. Those were all things I wanted, dreamt about and they were destined to be a part of my happily ever after.

After lupus changed my original career plans, my new career was going to be working with kids with their own chronic/life-threatening illnesses and their families. I managed to graduate college with two Bachelor of Science degrees while battling lupus and Sjogren’s syndrome; little did I know those were going to be the “easy” days.

Since then my body has been on a rapid downhill decline: I’ve been diagnosed with autoimmune thyroid disease (and had a total thyroidectomy), common variable immune deficiency, a severe latex allergy (have had airborne and anaphylactic reactions) and most recently mast cell activation disorder. I’ve been forced to give up on my dreams, move home and stop working. Thankfully my parents have been amazing and so supportive through all of this.

My new job has become fighting for my life, fighting for the access to the medications I need and managing my complex medical care and needs; there goes my happily ever after of my dream career. I’ve also had to come to terms with the fact that I’m neither going to get married, nor am I ever going to have kids. There go those dreams too. So I’m sitting there watching this show wondering, “Why me, where is my happily ever after, or am I ever going to get one?” My happily ever after isn’t going to have the classic Disney everything-ends-well fairytale ending. Since then, I’ve been on this quest to find or redefine my happily ever after.

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My happily ever after is found every day I wake up and keep fighting these dreadful illnesses with every ounce of courage I can muster. It is found in the days I feel even well enough to attempt to exercise. Maybe I’ll find it in a time where my weekly subcutaneous immunoglobulin infusions don’t cause fevers or side effects for days.

Maybe it’s hiding in lands I’ve yet to see as we keep going to places on my bucket list. And surprisingly I’ve found my parents can be fun traveling companions – who knew?! I know it’ll be found if I’m lucky enough to return to the fjords of Norway and breathe that magical Norwegian mountain air, or if once again I get to lay my eyes on the spectacle that is the midnight sun. Maybe I left it on the beaches of Hawaii, the picture perfect blue waters of Tortola or the Nyhavn in Copenhagen?

woman standing on a fjord in norway
Hiking a fjord in Bergen, Norway

I could just be overlooking it and it’s hiding in everyday life as I choose to keep living, keep going on adventures and keep making the most out of the crappy cards I’ve been dealt. I still have places I want to see, things I hope to accomplish and races to run. My happily ever after is never to be those big dreams, plans or that picture-perfect wedding and I’ve had to grieve and sometimes still grieve the life I’ll never have. Instead, I’m slowly starting to realize that this new happily ever after can be found in the littlest of things and most unexpected of places.

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33 'Habits' of People With Brain Fog


When you have a chronic illness and/or are taking certain medications, you may start to develop a symptom known as “brain fog.” Brain fog can affect your cognitive abilities and make it challenging to remember even simple information or communicate effectively with others. In order to cope with these challenges, many people may find themselves picking up “habits” or engaging in routine behaviors that help them through the frustrating cognitive impairment brain fog can cause.

We asked our Mighty community to share the habits they’ve developed – good or bad – because of brain fog. Maybe some of the following will sound familiar to you, too. Let us know how you cope with brain fog in the comments below.

 

Here’s what the community shared with us:

1. “Lists! My life consists of lists. And reminders on my phone. I have them pop up to remind me things constantly. Such as taking my meds, not forgetting to do something important, reminding me of appointments, etc. I’m 25. I shouldn’t have to do this. But that’s how I function.”

2. “I talk to myself. A lot. I have to narrate my life or I’ll forget what I’m doing.”

3. “Recording virtually everything I need to remember in the notes section on my phone. Especially things I want to remember to say/questions I want to ask in important conversations.”

4. “I isolate as much as I can. I can’t stand the humiliation I feel when I can’t form a sentence. Bare minimum human interaction.”

5. “I rely on caffeine to make it through my day. I work in the school system, so I don’t really get any breaks. I have to be ‘on’ until the moment I get into my car and drive away. Drinking coffee, tea, soda, etc. is the only way I can keep my brain from turning into mush.”

6. “I find myself stuttering a lot. I’ve never had a stutter, but I forget what the words are or what I’m trying to say, so I trip over the words coming out. It’s so frustrating.”

7. “When I’m leaving the house, I say to myself, ‘Keys fix everything’ as I physically check to be sure I have them. And it’s true – as long as I can get back in the house, I can solve almost anything else that might arise from my brain fog.”

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8. “Taking way too long to get anything done. (Not procrastinating, but like moving through peanut butter. It’s like my brain is on slow-mo.)”

9. “I tell other people (my husband or my mom) what I plan to say/do, so that when I forget, I can ask them for a reminder.”

10. “I try not to make phone calls because I have a hard time thinking up responses quickly.”

 

11. “[I] love using my Google calendar which my Amazon Echo can access. I just ask Alexa what’s on my calendar. The different alarm sounds remind me about daily activities, plus we can now put in scheduled reminders like ‘run the dishwasher’ so I don’t forget.”

12. “Blinking a lot, very quickly. I think it’s a nervous habit when I know my brain isn’t working well.”

13. “Re-watching a TV series less than a year later and having fun being shocked and surprised all over again because I forgot even the most iconic scenes!”

14. “I constantly repeat questions back to someone. So they ask me, ‘Hey, is today a day?’ And so I ask back, ‘Is today a day?’ and when they confirm that’s what they asked, I will answer. I do this so much it annoys even me but it has drastically cut down on me misunderstanding what people are asking me.”

15. “When I have brain fog, I double or triple check who I am sending messages to.”

16. “I zone out mid-conversation. Someone could be talking to me about something important and halfway through I need them to stop and tell me everything they just said, but very simply. It makes people think I don’t care but I can’t help it when my brain fog makes me get lost in the conversation and I need that occasional ‘pull on the leash’ to keep me mentally active in it.”

17. “Keeping busy with chores because cognitive tasks are too difficult.”

 

18. “Putting food in the microwave then forgetting it’s there shortly after and grabbing something else to eat.”

19. “I take screenshots of everything on my phone. Texts, websites, dates on my calendar, images, etc. I will even write myself notes and take photos of them. It’s the best way for me to keep all the information in one place I can access easily without worrying about misplacing a piece of paper or forgetting a bit of information.”

20. “I try to play games that exercise my brain to work fast. I don’t know that it helps, but I hope so.”

21. “I constantly forget words mid-sentence. I describe them in great detail, hoping the other person can fill in the blanks, while clicking my fingers.”

22. “I interrupt people because otherwise I will forget what I want/need to say. I don’t mean to do it but I’ll never remember what I was going to say unless I say it when it comes to me.”

23. “I have to do everything in order. If I don’t, if things get out of sequence, then I forget stuff. If someone talks to me while I’m getting ready to go out the door, I inevitably will forget to take something important.”

24. “I don’t have the energy to argue or put up with negative people anymore, so they’ve naturally weeded themselves out of my life. It takes a lot of energy to argue and my brain fog doesn’t give me a sharp mind to do it, so I just don’t. That’s a positive.”

25. “I text people immediately when I think of something I need to say because god knows I’ll forget it in five minutes… My few close friends have all learned that keeping their phones on ‘do not disturb’ at night is best.”

26. “Double and triple check my bag before leaving the house to make sure I have all the necessities: wallet, keys, medication, water, powerpack and cables to charge my phone.”

27. “Repeating myself over and over again as I forget what I have already said. Asking the same question more than once as even though I have heard the answer, I can’t remember what it was. Having a whole conversation with someone, but not remembering what we spoke about seconds later.”

28. “I photo document everything in life. I don’t want to forget precious memories because of brain fog.”

29. “I’ve started to forget when I’ve taken a shower or brushed my teeth last, so I shower twice a day and brush my teeth upwards of four times a day. That way if I miss one time, I’ll still be really clean from before.”

30. “I get overwhelmed by everything because I can’t think straight, focus or remember what I was doing, and so I then shut down.”

31. “Starting various different tasks as it comes to mind so I won’t forget to do it. The problem is, I start additional tasks one after another and I forget what it was I was doing in the first place. Doing one thing makes me think about doing another, so I do that thing while it’s on my mind and on it goes! I heard I should take care of something when I think of it so I don’t forget, but I obviously don’t follow it through properly!”

32. “I forget where I set things down and run around searching for them. I often run my Keurig without a mug under it, which is always fun. My brain doesn’t seem to work at all anymore.”

33. “Writing everything down! Even if I think ‘there is no way I could forget that,’ I have had too many times where I do forget it, so I always write little bits of information and thoughts and notes down, which is way helpful – as long as I can remember what the notes meant!”

33 'Habits' of People With Brain Fog
couple kissing outside in front of trees

To the Man Who Loves Me Despite My Chronic Illness


When I met you, you were a little lost. You didn’t know what you wanted to do or where you wanted to go. I, however, had it all worked out; the city move, the study, the career. The more I got to know you the more I realized I wanted you above all other things. I ditched the city dreams and put the study on hold. I was 17 and had a world of possibilities in front of me, with no interest in settling down. You changed that though, somewhere between that dimpled smile and those luscious curls I changed my life plans – and it was the best decision of my life.

We were young and in love; perhaps sometimes a little foolish and naïve, but we made it work. I helped you find direction, and you helped me find purpose. I watched you transform into a man as you started a career and set long-term goals. I learned how to be not just a girlfriend, but a partner, as did you. We both grew up together, transitioning from kids in lust to adults in love. It was truly a magical experience.

couple kissing outside in front of trees

Over the years we realized a relationship is more than just loving the other person; it’s compromise, sacrifice and hard work. We learned that love is not what keeps two people together – a relationship needs so much more than just love to survive. We’ve been through some of the best times in our lives together and some of the worst. We’ve traveled and adventured. We have seen every good, bad and awful side of each other. We have loved each other for 1460 days.

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Our relationship has been tested in many ways, sometimes getting close to the end, but there has never been a day where we didn’t say the words I love you to each other. In the past year, our relationship has struggled through its biggest challenges yet, and survived. If I didn’t know it before, I know it now – you are the man I want to spend every day for the rest of forever with. You didn’t need wedding vows to promise me “in sickness and in health” – you just did it. When given the chance to stay or run you decided to do both. You decided to stay with me and run to the ends of the earth to look after me; for this I can never thank you enough.

You have carried me, both physically and mentally, through my toughest days. You’ve cried with me through the emotional rollercoaster of chronic illness and reassured me every day that things will be OK. Sometimes I get so caught up in my struggle that I forget that it is also your struggle too. I can’t even begin to imagine what this is like for you. All I know is it can’t be easy.

I sometimes get caught up on how much better off you would be without me and the burden that is my illness – I know you’ve thought it too. But that’s OK because even though you know how much easier life would be with a “normal” and healthy partner, you choose to stay with me and for that I am eternally thankful.

I could spend forever apologizing for holding us back and forcing us to change our whole life plans, but that wouldn’t do either of us any favors. Instead of spending the rest of my life saying sorry, I want to spend it saying thank you. Thank you for holding my hand when I am scared, and pretending you are brave even though I know you’re just as scared.

Thank you for being patient with me when I am having a rough day. Thank you for telling me I am beautiful; not when I’m dressed up and wearing makeup, but when I’ve just woken up. Thank you for dedicating your life to making this relationship work and sacrificing so much for us.

There aren’t too many men that would do what you do, I hope you realize just how special you are. My only comfort some days is knowing I would do the same for you if our roles were reversed. I’m sure you wish you could take the burden of my illness from me as much as I wish I could take the burden of supporting my illness from you.

You fill my life with love, hope, courage and strength every day. I don’t know where I’d be today if it wasn’t for you. I love you millions.

This post originally appeared on Finding Rainbows in the Dark.

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woman sitting in a hospital bed wearing a hospital gown

Why I Think Doctors Should Take Time to Read Stories on The Mighty


It took me a solid six years, and countless specialists, to arrive at a diagnosis. This isn’t unusual for my illnesses. As a matter of fact, some people wait over 10 years for diagnosis, and in rarer cases, even longer.

I feel like this is something that can change. While some illnesses are very hard to diagnose and involve ruling out a lot of things over years, there are others that are missed by different specialists.

 

On The Mighty, there are 8,000 patients and family members or friends of patients pouring their feelings about their medical situations into words. Imagine if every doctor read even just a few articles. What if they were able to read and process what their patients are feeling?

Often a doctor appointment is short. You’re in and you’re out, and in that very short amount of time, the doctor sometimes has to make a judgment about you. There are so many variables they have to consider, and there is not enough time in an appointment for the doctor to understand not only the issues and concerns the patient comes in with, but also their feelings surrounding it. And so a lot of assumptions have to be made about the patient. This can be based on their history, their appearance, their age. And it often leads to the patient leaving the appointment feeling like they weren’t taken seriously, or that the doctor didn’t care.

This is the type of thing that leads to an example situation like this: A patient comes in complaining of overwhelming fatigue and joint pain. They have a history of depression and anxiety and are on antidepressants. Based on this history and the lack of time able to be spent with the patient, the patient is told they should try and exercise a bit more, and they run some very standard blood tests and when they come back normal, they’re told it’s probably just a manifestation of their depression, or just normal aches and pains.

This is just a random example. But if more doctors read articles from The Mighty, from the people whose lives are in their hands, maybe things would be different.

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I can’t help but think it would be so helpful for a gastroenterologist to go into the gastroenterology section of The Mighty and read some articles and get a patient’s perspective on life living with the illnesses they treat. Reading about their experiences with doctors so they can better themselves. Because everyone can always learn and better themselves.

They see visits with dozens of patients a day through their own eyes. But what if they got to see the visit from the eyes of the patient? Maybe we’d be a bit more understood. Maybe we’d be a bit more heard. Maybe we’d be diagnosed and treated more quickly than we are today.

Follow this journey on Love, Light and Insulin.

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A double exposure image of a woman walking in a field, with a pink overtone.

How I Choose to Respond to 'How Are You?'


“I’m here. Thanks for asking.”

That’s my new response when someone asks me, “How are you?”

I don’t believe that my friends really want a true, detailed response. And, I refuse to lie or minimize for their comfort. Sometimes I just don’t want to talk about it. It makes me feel too identified with my illness. I rarely feel 100 percent. Actually, I never feel 100 percent. I don’t really remember what being totally well is like anymore. Nowadays, I have good days, OK days, not so good days, and dreadful days.

Good days are days when I can do most of the things that I would like to do. There aren’t a lot of these. Most of the time I am in “OK days” and “not so good days.” On these days I will still have visits with friends but will usually leave early and then have to rest for several hours. These are the days where I need to be cautious and careful.

So when they ask how I am, I say, ” I’m here.” This says that I am not fully well, but you don’t have to listen to a description of my illness and what is going wrong at the moment. I actually find this helps me. I don’t want to have answer constant questions about my health issues. I have a chronic illness. Chronic means “doesn’t go away.” I hope my response doesn’t appear rude or condescending as I have no intention of being like this. I just find it tiring to explain the complexity of my health issues and how they interact. The only people really interested in the details are me, my doctor and maybe my husband.

“I’m here,” gives my friends permission to understand that I am not feeling fantastic and that I do not expect them to feel that they must ask any further questions about my chronic illness. It also tells them that I accept not being 100 percent well and that I will continue to try to participate in activities and socializing with them as best I can. We can then get on with enjoying one another’s company as there is more to me than chronic illness. I don’t want chronic illness to be focussed on. Chronic illness is only one bit of me, albeit something that has brought many changes into my life.

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I think that being able to say “I’m here,” indicates that I trust these friends and know that they really do understand the issues that I have with my health. They actually “get” chronic illness. I know that these friends will be supportive when I ask them for help or, they will understand if I cannot join them sometimes, or, that I need to drop out at the last minute sometimes, or that I may have to leave early.

“I’m here,” and, “Thanks for asking,” has released me from explaining myself all the time. It makes chronic illness easier for me.

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