Silhouette of stressed businesswoman in the office.

After a coworker “called her out” for visibly managing her pain at work, one woman is speaking out about the shame and judgment women often face when it comes to their periods. The viral post may resonate if you’ve ever had to cope with invisible health challenges (particularly ones others label as “taboo”) in the office.

A user with the screen name Snuffalo posted on the Mumsnet forum last week that her “sort-of-supervisor Guy” (the name has been changed) came over to her, noticed she had a hot water bottle on her lap and said, “There’s no way you’re cold today, are you?” Snuffalo replied no, it was just for the pain relief, to which he gave a “confused and then literally horrified expression” and walked away.

Less than 10 minutes later, she said she got a message from a human resources administrator that said, “Guy says you’re not well and should go home, everything OK?” After responding that she was fine and was using the hot water bottle for menstrual cramps, she said the human resources director reached out to her and asked to meet with her privately.

The human resources director told her she shouldn’t disclose her medical problems to anyone who isn’t part of HR as it can make them uncomfortable.

I’m literally shocked, I explain exactly what happened, she says “yes I understand, if you’re so unwell you need a hot water bottle you should be home, Guy is extremely uncomfortable and it’s unprofessional.” I say “this is weird, ok, anything else”? She’s quite breezy and professional – “No, that’s all, if you’re feeling better that’s great but if you need to, please do go home, OK bye!”

Snuffalo said she was “flabbergasted,” especially because other people use standing desks and special chairs for different kinds of pain and, as she said, “I’m not allowed to have a hot water bottle for my menstrual cramps? Am I right to be completely f*****g furious?”

Other Mumsnet users agreed with Snuffalo’s dismay. “It’s appalling to make such a fuss about someone having a hot water bottle. I regularly used to have one for back pain. It does seem like discrimination if other people are allowed aids to manage their various conditions, but you are told you should go home as you are making someone ‘uncomfortable?'” said a user with the screen name RatherBeRiding.

Some questioned whether HR was being unreasonable by suggesting she go home if she was in pain. Aa user under the screen name coddiwomple commented, “I am female, and I would be very uncomfortable to see a one of my subordinate doubled up in pain with a hot water bottle! It sounds perfectly reasonable to involve HR and not go into private details yourself. What exactly do you expect the boss to do? Please do not say ignore, because said boss will get in trouble or be complained against for ignoring.”

For people with chronic illnesses, the decision of whether or not to go to work or call in sick is never made lightly. No matter how “well” they look to their coworkers, they may be secretly dealing with pain or other symptoms to avoid using up limited sick time and to stay on top of their work. We asked our Mighty community to share how they decide whether or not to go to work or call in sick. Here’s what they told us:

“If my pain doesn’t allow me to get up and dressed. If I can do those two things then I can go to work and more often than not, once I’m there I’m OK. So much better now I don’t have to commute 2.5 hours each way!” — Samantha F.

“After a shower. I always ‘try.’ That means I see if I can get out of bed, then see how I feel after a shower. Sometimes I feel like showering helps even if I can’t really wash my hair.” — Makayla Marie G.

“I see if I’m contagious (a cold on top of the chronic issues for example), I see how I feel after I shower, I stretch to see what hurts, and check my pain/stiffness level. If I can’t perform the duties of my job then there is no point in going.” — AnneMarie G.

“Due to my existing medical bills and cost of living, I can rarely call out of work. The two or three times I have called out were when I stood up and passed out. I try not to let the pain, nausea, vomiting, or weakness keep me from going to work. I have no other choice.” — Jennifer D.

“For me it’s a case of when the last time was and how much money I would lose. Currently I’m unemployed but when I was it was more about could I afford to than did I need to. Many times I had to struggle through even though it was difficult to get out of bed which was very hard to do seeing as I worked in a fast-paced, high-pressure retail environment where I couldn’t sit down the entire shift.” — Teri F.

“If I can’t walk well, I know my body needs rest and forcing myself to work will only hurt me in the end. I don’t think people realize how much time and energy it takes just to shower and get dressed when you’re having a flare day. I’m in pain every day, but when the pain wakes me up before my alarm, that’s going to be a bad day.” — Tasha C.

“It’s really hard to determine. Sometimes I finally choose to cancel or when I was working calling in sick when I knew my pain levels would not drop down and I couldn’t get any rest or relief. When I knew I wouldn’t be able to function or do my job well… that’s when I’d call in sick. Sometimes we can press through but usually by the time I’m considering canceling plans I have already pushed through and I’ve hit the wall and can’t push through anymore.” — Jenny W.

“When the commute is a serious risk to my health. Or I physically cannot sit at a desk due to pain levels or fatigue. I have worked for 10 years but I’m seriously getting worried at how hard my conditions are making it. I don’t want to let anyone down but I also don’t want to hurt myself in the process.” — Keely S.

“Do I have call-in days left? Is it worth it — will I regret using one of those days and not saving it for later? Will I feel better in a little it once I start moving around?” — Brittany C.

When my fatigue and/or pain is such a distraction that my coworkers’ (deputies) lives are at risk (I’m a 911 dispatcher).” — Michelle B.

“Fortunately I have two awesome managers. I just tell the truth without softening blows or trying to downplay it and they understand. I consider myself extremely lucky with them.” — Chell D.

Thinkstock photo by kieferpix

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Sharing photos on social media can be intimidating for anyone. I always feel a lot of anxiety before sharing something. Nervous thoughts race through my mind: What will people think of me? Will I be judged for sharing this? And when it comes to sharing photos of your invisible illness, the stigmas and misconceptions surrounding chronic illness can make the decision to post even more challenging.

If you “look” sick in one photo, someone may accuse you of attention-seeking, but if you don’t “look” sick in another photo (as is often the reality with invisible conditions), someone may accuse you of faking your illness. It’s a frustrating dilemma – one we shouldn’t have to face, but unfortunately do all too often.

Although some of us may fear the judgment of friends, family and peers, it’s still important to be honest about our experiences living with invisible illness. So, we asked our Mighty community to share some of the photos they wanted to post on Facebook, but didn’t. Let’s shed some light on the reality of what it can “look like” to be sick.

Here’s what the community shared with us:

1. “‘But you don’t look sick…’ I’m sick and I’m also excellent at makeup. It takes talent to cover up chronic illness, and some great Snapchat filters!”

side by side photos of a woman in the hospital and a woman out and about wearing makeup with a snapchat filter

2. “I was having my third stroke. My dad had to leave to work, I told him to go and said I would be fine. I was there alone and kind of scared, but I did fine. I only suffered a little damage that time. In total, over the three strokes I have lost 30 percent of my brain.”

woman lying in bed after a stroke

3. “There are a lot of getting-ready-to-start-the-day type photos, people doing their hair, getting dressed, all happy… I was so frustrated one morning. I have 23 prescriptions, ranging from once to three times a day. This is my getting ready for the day, even if it is just to take my meds and lay back down. I didn’t post it, afraid of what people would say.”

drawer of medications

4. “This is a pic of me barely able to move due to severe nerve damage. I was on my stomach because lying any other way would have meant a night in the hospital. I was feeling down and wanted to capture the moment.”

woman lying on her stomach in bed

5. “I feel embarrassed sometimes that I have to sleep with a CPAP. I have fibromyalgia and sleep apnea is a common problem. Mine is severe. I wanted the picture because my dog was snuggling with me but I would never have shared it!”

woman with a CPAP machine sleeping next to her dog

6. “I’m on my child’s Make-a-Wish trip. Physically I want to stay in bed. It hurts so much. I’m fatigued. Not a good tired, like from having fun – [it was a] no fun, deep pain fatigue. I had trouble getting myself up. So I hid it and pretended I really wanted to sit with Will Smith so my kid didn’t pick up on how miserable I [was].”

mother and son meeting Will Smith on a make-a-wish trip

7. “I was going to post this on Snapchat, but then didn’t. I’m wearing my back brace for support because I have Ehlers-Danlos syndrome and I have debilitating back pain. I didn’t post it because I knew it was a little harsh for my Snapchat friends.”

woman holding her shirt up to reveal her back brace

8. “A tale of two faces. The left was taken two days later after the right. My inflammation was at its peak, going through a flare-up. I had to be at this wedding but didn’t get time to rest. Indian weddings last three to four days. Impossible to do without meds and rest. I’m a lot more vocal on how I feel and saying no now.”

side by side photos of a woman smiling

9. “I finished a half-marathon in my town. If I posted this, some people would likely view it as ‘See? She doesn’t need disability!! She is doing half marathons!!’ A friend suggested I run wearing a T-shirt that shows all the lesions on my brain MRI (on back of shirt) and have it say something like ‘Yes, I’m disabled. But my legs still work!’ I have the rare genetic (progressive neurological) disease called CADASIL.”

woman holding a medal after running a half-marathon

10. “Hemiplegic migraine…I haven’t told my friends and family about these since I already have chronic migraine and ankylosing spondylitis. The last few years have been such a challenge physically due to constant and oftentimes excruciating pain. I didn’t post the pic because I knew there would be some people thinking I was attention-seeking with yet another illness.”

selfie of a woman in a black shirt and necklace

11. “Some nights when my pain spikes my face turns randomly red. It also happens just before flare-ups and sometimes for no reason at all so I started documenting it for my doctor. I didn’t post it because I already have people in my life who think I fake things and that I’m a hypochondriac.”

woman whose face is red during a pain flare

12. “I had just taken a shower and dressed to try and feel better, but all I felt was drained, flat, inflamed, in more pain, tired and lost. Then I had to try and explain to my niece why Auntie Nona can’t play right now. Having fibromyalgia and chronic lung issues coupled with social anxiety and a tendency toward severe migraines does not make for the best of times or the best of situations when dealing with a 2-year-old mini-me. Most days I’m so tired, awake and in pain all at the same time that I’m not sure if I should rest, move, sit, stand or just run off a cliff screaming. It’s incredibly frustrating, even after 17 years of this.”

woman sitting on a couch looking tired

13. “I wanted my friends and family to know I had made it out of surgery safe and sound…but I didn’t want the backlash [from] some of my friends about how sad and injured I look. I wasn’t injured, I was receiving care…a lot of my friends don’t understand how embarrassed I am about my PICC line and my old portacath site when they comment about them.”

woman after surgery with multiple bandages on her nose, face, chest and arm

14. “When you bruise so easily even gentle yoga leaves its mark… I had to take a photo of the roller once we figured out the pattern. I’m not in a habit of posting photos of myself sick. It can be perceived as attention- or pity-seeking, and leads to awkward (and public) questions and comments from others who do not understand this life. So any photos of me are edited to exclude my crutches, wheelchair, and any help required to be safe.”

bruises on a woman's back from a foam roller

15. “Chronic migraine. You can tell I had been crying. My face gets red when I’m in a lot of pain. Since the day it came eight years ago, I haven’t been headache-free. The pain is intense and it doesn’t go away – it just fluctuates. I didn’t post this picture because I didn’t want people to think I was looking for attention.”

selfie of a woman having a migraine

16. “I did post this photo but deleted it shortly after when I felt embarrassed. The caption read ‘Grumpy Cat (the character on my shirt) is conveying how I feel today.’ I’m really struggling with the deep depths of depression right now and wanted to express that. But shortly afterwards felt it was a mistake and people would think I was pathetic. So I deleted it.”

black and white photo of woman in grumpy cat pajamas sitting on her bed

17. “My wife and I at a Lyme disease rally on Parliament Hill (Ottawa, Canada). I feel this awful picture shows how really sick and tired I actually am. I can usually put on a brave face the few times I leave the house but the rally was too much for me to handle.”

woman in a wheelchair at a lyme disease rally with her wife

18. “Another visit to the ER, receiving pain meds though my port. Because of the treatment for my chronic illness, all my hair came out.”

selfie of a woman in a hospital gown and IV in her chest

19. “This was right after my ninth shoulder surgery this June. I didn’t bother to post it, because most people don’t think it’s a big deal anymore…”

a scar on a man's shoulder surrounded by tattoos

20. “I wanted to show off my beautiful ostomy bag cover, but I was afraid to be judged so I hide it under clothing.”

woman taking a photo of her ostomy bag

21. “Not a good day.”

woman lying in bed looking tired

22. “This is a picture I took of my fiancé holding me during a bad flare. The story I had wanted to share is how we travelled for a wedding and it had been too much for my body, so we had to leave the wedding early to rest in the hotel. He supported me through it all. The flare, the pain, the disappointment and guilt from leaving. I didn’t post because I thought people would judge me for ‘attention-seeking’ or being negative, or lying.”

woman's boyfriend holding her in bed during a pain flare

23. “My CSF fluid had built up in my brain so much that I was horizontal for at least a week before I was able to get a spinal tap to relieve the pressure. It caused me to get high fevers, intense migraines and I had to cover all my windows with bedsheets because any form of light in my eyes would make me cry. People are so quick to judge that I didn’t want to come off whiny or attention-seeking. The only reason I took the picture to begin with was to keep track of my temp throughout the week.”

woman lying in bed holding up a thermometer that reads 102 degrees fahrenheit

24. “I feel how I look. Shitty and in pain. Was going to make a new profile pic but after seeing myself I never posted it.”

selfie of a man looking tired

25. “The picture is of my daughter Krista and her little one Rhiannon. This was taken just before her lupus diagnosis six years ago. I have always wanted to post this radiantly happy picture, but have always stopped just before [because] I have almost not wanted to remind her of life before lupus.”

woman smiling with her daughter

26. “Three-day migraine. I’ve had chronic migraines my whole life, along with several other issues. This is supposed to be my invisible one, but looking at this picture I can’t understand how no one can see the extreme pain I’m in all over my face.”

selfie of a woman sitting on her couch with a migraine


26 Photos People With Invisible Illness Want to Post on Facebook, but Don't

I have just been through a year that had me shouting “seven hells” many times. My seven hells this year were PMDD (premenstrual dysphoric disorder), multiple pulmonary embolisms, anxiety, panic attacks, menopause, Lyme disease and interstitial cystitis.

“Game of Thrones,” and other shows like it, have helped keep me occupied and distracted through the pain and heartache that often accompanies chronic illness. I wrote an article about it last year.

I am incredibly grateful to have made it through this year. I am still struggling and fighting, but am much better than last year. Last night was the premiere of “Game of Thrones” and I couldn’t wait to watch it. Partly because I have been waiting a year and a half for the new season, and partly because it is a reminder that I made it through, I survived.

This morning while making pancakes for my family, it seemed like every song was reminding me of “Game of Thrones.” Some songs made me laugh, some made me think of certain GOT characters, and others made me feel excited and happy. So happy that I danced in my kitchen for the first time in over a year. I hope you enjoy my playlist, and I hope you dance too.

Here is my “Game of Thrones” playlist:

1. “Another One Bites the Dust” by Queen

 

Who will bite the dust this season?

2. “Every Rose Has Its Thorn” by Poison

 

Last season Margaery and Loris Tyrell were killed by Cersei. I’m sure that their grandmother Olenna will be all thorns this season.

3. “Born to be Wild” by Steppenwolf

 

The Wildlings are a huge part of GOT and will have a great role to play this season too as many battles will take place.

4. “Back to Black” by Amy Winehouse

 

Jon’s watch has ended and he won’t go back to black, but I’m sure the Night’s Watch will be by his side as they fight the Night King and his army of wights.

5. “Pride” by U2

 

This important song was of course written about MLK Jr., but it briefly made me think of the fictional character Ned Stark, who lived his life with honor and pride, and who many still fight for in the name of love.

6. “The Rains of Castamere” by The National

 

Who could forget the Red Wedding or this amazing/haunting song? What will the Lannisters be up to this season? How many of us souls long to see/hear what they will do?

7. “Burden In My Hand” by Soundgarden

 

This song reminds me of Tyrion. He is now hand of the Queen; how will he handle this honor and burden? Will he rise to the occasion once they reach the sands of Dragonstone, or will he drown in alcohol and fall to pieces once again?

8. “Dire Wolf” by The Grateful Dead

 

Will Ghost return? Will Arya be reunited with Nymeria? Which sinners and bad guys will the Stark wolves attack? Many have it coming to them.

9. “Hound Dog” by Elvis Presley

 

He isn’t high class, but I’m so glad the Hound is back! He prefers chicken to rabbits and has been a secret friend of the Starks. F*ck the king, let’s see what he does this season!

10. “Witchy Woman” by The Eagles

 

Cersei was born with a silver spoon in her mouth, and now she has suffered the witches’ prophecy. Gold are now her children’s shrouds; will her little brother now choke her to death? We shall see.

11. “Ain’t No Mountain High Enough” by Marvin Gaye & Tammi Terrell

 

Nothing will stop The Mountain from protecting Cersei, not the Trident river or the Vale of Arryn, and nothing will stop me from watching the Cleganebowl if it happens this season!

12. “Smoke On The Water” by Deep Purple

 

This song reminds me of the Greyjoys since Pyke is always misty and smoky looking. It also reminds me of The Battle of Blackwater, and other battles to come. What will be Theon and Yara’s fate? What great battles on the sea lie ahead?

13. “Something Wild” by Lindsey Stirling

 

Dany has a big heart and has become wild and powerful, and she is being called home. While her dragons chase the sky, the lights are blinding and her quest is binding. Her maps and battle lines are drawn, will she prevail and ultimately sit on the throne?

14. “Simple Man” by Lynyrd Skynyrd

 

I’m on Team Stark and Jon Snow is my favorite. He may be a simple man but he has learned something, and does not live for rich mans gold. He follows his heart and knows what’s in his soul. I hope it leads him to great things and happiness.

This past year I said “not today” to the god of death many times. I hope you say “not today” too, and I hope he listens.

Winter is here. Let’s all hope it’s not a long one.

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


Traveling with chronic illnesses can be hard and full of road blocks. These things can often prevent us from going out and having fun. To start getting comfortable with traveling, one option is to start with day trips close to home. A day trip is typically a trip where you leave in the morning, travel for a while, reach your destination and have fun and then travel home again. This set-up can be good for spoonies because there’s no staying overnight and less time spent on the road. But there can still be issues arising from this option, so the goal of this list is to help smooth out the issues so others with chronic illness can also enjoy getting out of the house.

1. Research: Find the website for the place you’re going and take a look around it. Try to see if it’s one floor or multiple floors, if it’s stairs or elevators or ramps, what kind of terrain, when it’s most popular and how many people go there. Click on all the links and see if you can find their accessibility/accommodations page. Some places will have services available or have wheelchairs for use. See if there’s a restaurant there. Find out how long it will take to get there and back. Look at reviews of the place and see what people think of it. Then look at any other thing that could interest you and your trip.

2. Plan: Planning can make a big difference. For me, planning helps calm my anxiety and gives me a solid foundation to set the trip on. Planning falls after I have done solid research. To plan, I take what I’ve learned and make it into a schedule. Remember that even the best planned schedule can change, so regard it as a loose guideline and not the law. If you regard it as set in stone, it could bring about anxiety and upset if something goes wrong.

Another thing to include in planning is the weather and what type of clothing to wear to avoid being uncomfortable and hot/cold away from your house.

 

3. Medical Supplies: Medical supplies can include medication, equipment, and mobility aids. Using the plan you made earlier can help you figure out what you can leave and what you can take. Taking the departure time from your plan shows the time you need to start having things packed; the return time is when you stop planning.

Let’s say I’m leaving at 10 a.m. and planning on being home at 8 p.m. And let’s say I take medication five times a day, starting at 8 a.m. and ending at 9 p.m. I could also have treatments and evaluations I need to do throughout the day. And let’s say I also have as-needed medication I could possibly need. This means I should pack the equipment and medication that falls between 10 a.m. and 8 p.m., but because my last medication is at 9 p.m., I should also bring that medication as well, just in case I don’t get home on time. I should also bring all my as-needed medication. My motto regarding this is: it’s better to have it and not need it than to need it and not have it.

Lastly in this topic is mobility aids. This is a reason why research is so important. By researching, you can learn what the place is like for accessibility and what type of mobility aid you need to bring if you have multiple ones like I did. And if you don’t have a mobility aid but will need one, research can show if you can rent or borrow a wheelchair at the place.

4. Mental Health: Your mental health is just as important as your physical health, and trips can be stressful. One option is to bring some calming things to keep you from getting overstimulated.

Some things I bring are: headphones/music, earplugs, a soft blanket, a book, and some type of fidget toy. Of course, you don’t need to bring these things, just whatever would make you comfortable.

5. Food and Drinks: Keeping water and snacks with you during a trip is a great idea. Being hungry or thirsty can create headaches and a worsening of symptoms, and that tends to make people cranky, and it’s hard to enjoy ourselves when we’re cranky. Also back-up food can be good to have if you have stomach issues and cannot eat what is at the place.

6. Support System: The difference between having the time of your life and a stressful, upsetting time can sometimes be who you have the experience with. Go with supportive, understanding people who will know how to help you if you need something and who will work with you.

7. Canceling: Know you can cancel if you don’t feel good, and know that having to go home halfway is OK. Being able to have a way out and not being pressured into staying the whole time if I feel like crap helps me feel better.

Editor’s note: Please consult a doctor for any questions or concerns you have regarding your health and traveling.

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

Thinkstock image by MissTuni


Life with an invisible illness to anyone that doesn’t live with one is impossible to fully understand.

How can people who have an ordinary, well-functioning immune system possibly understand what life is like? The answer – they can’t.

I have created a list of daily issues that people with chronic illness go through to try to explain to people without our illnesses what life is like:

1. I am constantly in pain.

This is not the same pain that “non spoonies” have. It is an agonizing pain, that prevents me from socializing or going to work. I might not be able to stand up or sit down for long periods. I struggle to understand the pain myself sometimes. My pain normally starts in the tops of my legs, and depending on various factors, it can spread down in my lower legs, or into my back. On a really bad day, it will spread everywhere.

I can’t really describe the pain I get. Sometimes it feels like I have bugs crawling in my legs, other times it is a constant ache and sometimes it is a burning pain. I have been backwards and forwards with various aches and pains throughout my life to the hospital and doctors.

Some times the pain has meant I have been on crutches or had to use walking aids to help me. I also had to have three weeks off work recently for an unexplained pain in my foot. I have in the last month, I have been diagnosed with fibromyalgia. Although this is not good news for me, in a way it feels good knowing that my pain is not “all in my head” and I am not imagining it.

2. I bruise really easily.

This isn’t great for someone like me who is very accident prone. I am constantly falling over, or banging into stationary objects. Doors and my feet are two of my favorite trip hazards. This means when a new bruise comes I am used to it, but I am constantly being asked, “Oh, have you seen that bruise there?” Yes, thanks for asking, I have.

3. My tiredness is not laziness.

The big problem for “spoonies,” is the constant tiredness. It is not laziness! Despite what people who think we can control our weight, by eating less and moving more, will tell you.

For me, it is a debilitating fatigue, caused by adrenal issues, or gut problems causing malabsorption. In fact, it is not even fair to describe it as tiredness.

It is an exhaustion that prevents us from going out and doing what we want to do, let alone what others want to do.

I have lost friends because of my fatigue. Sometimes on a bad day I can go to bed at 9 p.m. and not wake until 3:30 p.m., and even then I still only feel like I have had 30 minutes restless sleep.

I want to go out and be with my partner, my family and friends, but most of the time it takes all my energy just to get off the sofa or out of bed.

4. Frequent, non-frequent or painful toilet trips.

As someone who has been diagnosed with irritable bowel syndrome since I was a teenager, and most recently diagnosed as a celiac, toilet trips are a problem for me. Sometimes it can take me ages, other times not so much.

This is very embarrassing, especially in situations where I am not in the comfort of my own home.

I remember a time when I was about 18 or 19 years old. I had gone out to a nightclub with friends. I was having a great time, when all of a sudden that familiar feeling in my stomach reared its ugly head. The cramping and pain. I needed to go but the queue for the girls bathroom was absolutely chocka.

“What do I do?” I kept thinking to myself. I stood in the queue and just prayed silently in my head for the queue to go down quickly. Fortunately it did, and I got in the cubicle and did my “business.” However, there were at least 15 girls still in the bathroom checking their hair and makeup. I had been in the cubicle quite a while, and was in pain. Then, one girl banged and kicked my cubicle door, and very loudly and said, “WTF you doing in there, have you died?” and laughed. I said nothing. I didn’t want anyone to know it was me in there, so I lifted my feet off the floor and balanced them on the door, so that if anyone looked under the door they would think the door had just locked from the inside and no one was actually in there.

I was absolutely mortified because I knew that I was still going to be a while. If they had wanted to, the girls could have gone in to the neighboring cubicles and peered over in to mine.

I kept still, and didn’t make a sound. I was so concerned that someone might hear me breathe and then they would know I was in there. I wanted to fall down the toilet and vanish. Eventually the girls did leave, and I came out, in floods of tears because of the embarrassment. I didn’t even go back to find my friends. I walked straight out of the club and went home alone. My night had been spoiled. I promised myself I would never let that happen again.

5. Frequent, inconvenient and most of the time, pointless hospital or doctors visits.

This is a huge bug bear of mine. I can not choose when we are sick. When I am going to catch a cold, or a general bug, that completely shuts my immune systems down and makes me really ill. I understand that this is really inconvenient for my employer, but I can not help it.

I will have time off work.

I wish I could schedule myself around “normal life,” but it does not work like that. Sometimes it happens when I am out having fun and we have to go home, or go to hospital. I can only apologize.

I know, hand on heart, how annoying it can be for some. However, think how bad I feel being the person that keeps going to hospital appointments and being told:

“You’re fine.”

“Just take some antibiotics and go home.”

“Keep your fluids up.”

I am the patient, and I know when I do not feel right.

Many of us spoonies lost faith in the medical profession a long time. Of all the spoonies I have spoken to, it has taken them ages to get a diagnosis at all, and even when we are being monitored, and have researched what our optimum blood levels should be, the doctors still tell many of us that we are fine.

My hyperthyroidism was discovered purely by accident. I had been told from a young age that I had a virus in my blood but I was going to have to learn to live with it.

Then I was told I was borderline low thyroid. When I moved doctors, the nurse at a routine exam checked my pulse and asked, “Have you run here?”I laughed. I had driven and had been sat in the waiting room for 20 minutes. She repeated the test and my pulse rate went up. They referred me for a blood test and called me into the doctor the same day. I had hyperthyroidism and Graves’ disease, and my levels were sky high. Had it not found when it was, it could have killed me.

Maybe if the medical profession had monitored me more closely when I was younger, I would not have ended up as ill as I was.

I was also diagnosed with irritable bowel syndrome from about 15 years old. I was given muscle relaxants for the pain and constipation, and told that nothing else could be done.

Hang on a minute, though. This month, I have just been diagnosed with celiac disease. Again, this is sounding like a familiar story. Maybe if the medical profession once again had monitored by stomachaches, and multiple trips to the hospital in agonizing pain, I would have been diagnosed with celiac sooner and not spent most of my life with terrible stomach pain.

If my celiac had been diagnosed sooner, it may have prevented my thyroid from malfunctioning in the first place, and I might not have had to have had it removed, as there is a strong link between thyroid and gastrointestinal problems.

It might also have meant that my gallbladder might not have started producing gallstones, if my gut was working properly and I was not eating gluten. I might not have needed to have my gallbladder removed. I am due to have a gut biopsy soon, so hopefully there has been no lasting damage caused by celiac not being found sooner.

6. We spoonies are still human beings, and the people that you knew before we got sick.

Do not forget us.

Support us.

Keep asking us out. We may not come, but still keep asking. One day we might!

If you do not understand something, ask us! Sometimes we do not know how to explain it very well ourselves, but we will try.

We are still the people, the family, the daughters, sons, friends and partners that you love. We just have an underlying problem that we can’t get rid of.

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Editor’s note: Please see a doctor before starting or stopping a medication.

The fickle nature of chronic illness has a way of leaving me feeling stuck and out of options. Many times, I can find a good work around to get myself out of the jumble of the day, but alas, sometimes circumstances really suck and become more than I can handle.

A few months ago, my endocrinologist wanted me to get a DXA scan. I had just had one a year prior, and even though it had shown minimal bone loss, I thought it odd that she wanted another one so soon. I saw her last month to go over the results. In less than 15 minutes, I was told I had osteoporosis in my spine, given a choice of two medications, and sent on my way.

I sat in my car and cried for a few minutes, and then I played the blame game. I blamed myself because of my crappy diet and non-existent exercise routine. I blamed myself for being cavalier with my calcium supplements. Then I got angry at Crohn’s for being a big jerk, and just for good measure, I cursed my temperamental, menopausal ovaries.

Once home and alone with my scrambled thoughts, I went straight to the computer and enrolled in “Freak Out 101” at “Google University.” I Googled osteoporosis, I Googled the medications… I Googled until I had about a dozen tabs open!

Full disclosure: this isn’t my first rodeo with bone density issues. About 14 years ago, when I was new to Crohn’s and all its wonderment, my gastroenterologists (GI) doctor was concerned about my Prednisone use and mal-absorption issues related to the Crohn’s and ordered a DXA scan. I was skeptical, but the scan confirmed osteopenia in my hips and osteoporosis in my spine.

He prescribed Actonel, a medication that most women don’t start taking until they are in their 60s. I was 37.

Actonel wreaked havoc on my upper gastrointestinal tract and caused esophageal damage. Enter protease pump inhibitors (PPIs), namely Prilosec. After two years my bone density improved and against medical advice, I stopped taking the Actonel. I could no longer tolerate the burning in my throat. I needed the PPIs for another six years. I was anxious to wean myself off of them because… they can interfere with calcium absorption and… drum roll please… may contribute to developing osteoporosis! That’s kind of fucked up.

Osteoporosis, my old friend, had returned and I had no clear picture of what my future might hold. My GI doctor and gynecologist have deferred to my endocrinologist, and the endocrinologist is pushing drugs (scary drugs). She is treating the osteoporosis, not my whole being. I pondered, “This medication can’t be my only option.”

I was stuck!

When I’m feeling this way, I like to recall a favorite lesson from my master’s program, “Life as a Rice Pot.” The rice pot is the symbol of movement; the creation of possibility, a synonym for life. Picture a covered rice pot sitting atop a flickering flame, contents simmering away. In time, the lid will start to jiggle and jump, steam will escape. Everything is moving in harmony as the once inedible rice is transformed into nourishment. Not enough heat and nothing happens, too much heat and the whole thing might blow.

So I sat quietly and thought, “I think I may have stopped paying attention to my rice pot and let it boil over. Now the flame is out and nothing is moving.” I didn’t know where to begin. Then it hit me. This is my life, my health, and my rice pot; I knew what I had to do. I re-lit the flame by making a phone call and asking for help.

My insurance company has an “ask a nurse” number. I called and as coherently as I could, I explained my situation. That I collect chronic illnesses like someone might collect sea shells and that my latest diagnosis and drug options had me at a loss. I discovered they have a case management program and that I would qualify.

That call led to another call and I now have a nurse case manager that is helping me manage my care. She connected me to a pharmacist so I could ask about other drug options. I have spoken with a social worker that has helped me find a therapist. (Houston, we have simmering!) I also started physical therapy and have been learning safe and smart exercises for balance and core strength.

While this flurry of activity has been time consuming and tiring, it has also been empowering and a big boost to my confidence. The phone calls, appointments, and exercise have forced me to put myself and my body front and center, back into my awareness. It’s a lot of work, tending this rice pot. I am doing it and I am worth it!

Follow this journey on Write Down the Middle.

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