Lonesome girl holding a curtain at night looking out window

6:15 p.m.

“Shit,” I mumble as my leg gives out from the shooting pain striking through my body like a lightening bolt.

I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about.

6:20 p.m.

I make my way over to the couch, carrying my pre-made dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.

6:24 p.m.

It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful trigger point knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled.

6:27 p.m.

I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?

6:45 p.m.

I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.

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p.m.

I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.

7:03 p.m.

I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. Postural orthostatic tachycardia syndrome (POTS) can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!

The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. “Gossip Girl” is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and turn on “The Kane Show” podcast I had been listening to for the past several years.

I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water.

7:16 p.m.

Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.

7:50 p.m.

My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.

Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, cannot.

8:03 p.m.

I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.

8:05 p.m.

I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my 20-something friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are “normal.” I know that better than most.

8:06 p.m.

My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.

8:08 p.m.

I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck.

Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today.

I searched the document and the word “pain” was listed 21 times in the two-hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface of how hard it is to deal with so much pain, day in, and day out.

Twenty-two.

This blog was originally published on Single in the Suburbs.

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Dear friend, partner and family members,

I get it. It’s hard to understand what someone with a chronic illness or chronic pain goes through on a daily basis without really experiencing yourself, or being it in with them fully. You want to do everything that you can to “fix” the problem, but there isn’t anything to fix when you have a chronic disease that has no cure.

What you may not know is that this disease is not only my life and my journey, but it is also my job. I put hours and hours into researching my disease, talking to women with similar symptoms and diagnosis, finding alternative therapies, treatments, quasi-cures and looking into why this is even happening in the first place. I go to doctors appointments and know more information then the doctors or specialists themselves about my condition.

As nice as it is to hear, “feel better,” “you’re too young to be this sick,’ “you can get through this,” “we will get through this,” “you are a fighter and so strong,” or “we will find a cure one day,” it gets exhausting hearing those things because they are not helpful. They are making you feel better about my situation rather than me.

I found myself leaving conversations with those that I love the most feeling unheard or disconnected. I knew there was no way for them to understand what I was really saying because they can’t physically and viscerally experience it. I also left those conversations feeling low, down and worse off than when I started them.

I began to shut down and would not open up even to the ones closest to me and just went with the usual, “I’m fine. Everything is fine,” approach. This approach isn’t helpful either because then as I shut down, I go to a dark, lonely and isolating.

It is very easy to slide back into that space and think that you are alone in this and no one could possibly understand. After hearing these responses and a lot of similar ones, I began thinking about why these are the responses that our culture goes to immediately…What can I tell people that would actually help and serve me?

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I spent a few months of feeling shut down and being aware that I was sliding back in to the dark space. I began to think about if I had a magic wand, what would I want to create? What would I want these people to say to me? And I realized something so powerful and so amazing.

All I really need from those that I love is deep listening. I really just want my close friends, family members, and even my partner to sit down with no other distractions and ask how I am doing. I really just need them to listen to my response and give me the space to share how I am feeling.

I think that people get really caught up in what they are going to say next, how they are going to respond and if it is going to be the right and supportive thing to say. And it’s interesting, since having this awareness, I have played around with it a little bit and observed people when they ask me how I am doing. I pay attention whether they are really listening for my response or just asking to get it over and done with so we can move on to another part of our conversation.

I realized people are uncomfortable with my response. They don’t know how to just be in the shit with you. They don’t know how to handle or respond to the fact that I am struggling, and that it’s hard and has been frustrating for me. It’s OK that there isn’t a cure, and it’s okay that you don’t have those magic words that are going to completely fix all the problems in my life.

I don’t need to have a “fix it” conversation, I am OK with where I am at. I am relatively at ease and accepting of what this journey is for me. I have a lot of tools in my toolbox, and know what methods will help and what is working for me currently.

Don’t get me wrong, I will never stop advocating or researching for a cure, but that isn’t what I am asking for from my loved ones.

I am asking for the space and a listening ear to honestly feel how I feel and speak what I need to speak. And a response of, “That really sucks, I can’t imagine how hard that must be,” is honestly the only response that I need to hear. You don’t have to make it better for me.

Another thing that I really can’t stand to hear is, “If you need anything let me know.” As someone who has a hard time asking for help, even before being diagnosed with a chronic illness, this feels like the most insincere form of support that I have received.

Chances are I will pretty much do anything and everything to not reach out and ask for help verbally. It can already feel like a burden to have to ask for things when you are experiencing a pain flare or severe symptoms, and I feel bad and guilty enough for having to rely on my husband as much as I do.

With that said, we are both in it together. If you want to really help, think of things on your own that may be a nice and helpful gesture for a friend, don’t put the ball in their court.

If you really wanted to do something hands-on, do some research in your spare time on my condition. Ask me questions about how it feels or what new research I have come across. Ask if it would be helpful to go to a doctor’s appointment with me, or how my last one was.

Do things that would be helpful, such as bringing a meal when you know your friend is having a pain flare and is too tired to cook. Fold a basket of laundry that you see sitting there while you’re visiting. Ask if the dogs need to be walked or taken out before you leave, or if you could start dinner for the kids before you leave.

These are helpful things that make it feel like you care. For me personally, it makes me feel cared about. It makes me feel heard and connected in a way that can be a challenge when experiencing chronic pain or chronic illness.

I am still practicing asking for help and it can be a tough pill for me to swallow. Not only do I want to do it for myself and find it frustrating that I can’t, but asking for help can be hard in general. Although I know in my mind and heart it is a sign of strength, at times for me it can feel like a sign of weakness.

These are all helpful things that go so much further than “feel better,” “you’re so strong,” “let me know if I can do anything to help,” and “we’ve got this.”

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This past January I had the opportunity to study abroad in Ecuador and the Galapagos Islands. Here are a few tips I have come up with to help make studying abroad easier.

1. Make sure you have enough medicine to get you through the trip and for a few days afterwards.

The last thing you want is to run out of your medicine while on a trip, especially if you are out of the country. Make sure you have enough to make it through the trip and have some extra. I recommend the extras just in case your flight back home gets delayed or cancelled. There is no telling how the weather is going to be; there could be a freak snowstorm, thunder and lightning or high winds that will cause your flight to be delayed or cancelled.

2. Have a note from your doctor stating you need the prescriptions.

I carried a note with my medications from my doctor stating which prescriptions I needed and why I needed them. I never needed the note but it is better to be safe than sorry, especially when you are out of the country.

3. Carry a medical card with you everywhere you go.

This is something else I always carried with me and fortunately never needed. Any chronic illness is unpredictable; you can be fine one minute and not the next. I had a medical card that said my name, medical problems, medications and emergency contacts (including my doctor). If I had to go to the hospital while I was there, they would have been able to look at the card and do what they needed to do.

4. Always keep your medications on you.

Always keep your medications with you even if you don’t think you will need them. I carried mine in my backpack so I always had access to them because like I said earlier, chronic illnesses are unpredictable. The last thing you want is to be in a situation where you need your medicine but don’t have it.

5. Keep any medical supplies in your carry-on bag.

Although it doesn’t happen often, airports sometimes lose your luggage and you may not get it back for a while. Keep your medical supplies in your carry-on just in case this happens so you know you will have them with you if you find yourself in that situation.

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6. Always have water and snacks with you.

I never left the hotel without filling up my water bottle and grabbing a few snacks. Being in a third world country, we were told not to drink the water so we always bought bottles of water and filled our reusable bottles at the hotel’s water cooler. This way, my sugar would not drop, I would be able to take my medications and I would be able to stay hydrated.

7. Wear comfortable shoes.

We did a lot of walking and hiking so I was glad I had my comfortable sneakers and hiking boots with me. I also brought flip-flops with me for when we went to the beach and went snorkeling. It would also be wise to bring waterproof shoes with you for when you’re in the water so you don’t have to worry about stepping on anything.

8. Don’t be afraid to tell someone you need a break.

If you need a break, tell someone. You don’t want to continue to push when you’re already hurting because it will get worse unless you take a break.

woman standing next to marker for zero degrees latitude in ecuador

9. Live in the moment, don’t hold back and have fun.

This is the most important tip. Do not let your illness hold you back. Live in the moment and have fun because that’s what you’re there for. Be safe and take care of yourself, but have fun, because these are often trips of a lifetime.

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“These mountains you are carrying, you were only supposed to climb.” –Najwa Zebian

In fourth grade, my teacher assigned a quote every day, which I copied into my English notebook in cursive. Then I wrote a paragraph about the meaning behind the quote, using real world examples to illustrate my ideas. So here’s my quote for today. And despite the fact that I got an A+ on my quote journal, I can’t think of anything to say about this quote. I’ve sat at my desk for 20 minutes trying to write about this quote, and I’m at a loss. Because I don’t really know what it means, but I know that this is exactly how chronic pain feels. It’s the suffocating weight of chronic pain, the grieving for how easy life used to be, the anxiety about future pain and the isolation. So instead of writing a paragraph about this quote, I’m going to tell a story. And maybe the story illustrates the meaning of the quote, or maybe the quote is actually about climbing mountains and I missed the point.

Eight months ago a new man walked into my life. I was enjoying my independence as a single 20-something, but I didn’t get a choice with this relationship. His name is Mr. Ice Pick. Since day one, he’s been sitting on my shoulder with his ice pick and stabbing my neck and head all day. He’s the last thing I think about before I fall asleep, and he wakes me up every morning. When I zone out in a conversation with a friend, it’s not because I’m not interested. It’s because I haven’t been giving Mr. Ice Pick the attention he wants. And let me tell you, Mr. Ice Pick is high maintenance. I like to exercise; Mr. Ice Pick is a firm believer in lying in bed all day. He gets angry when I sit too long; however, he also hates it when I move around a lot. He’s never happy.

For a few months, Mr. Ice Pick consumed me. He controlled everything I did. It was exhausting to get through day after day with Mr. Ice Pick on my shoulder. And now I’m really sick of Mr. Ice Pick. He makes everything way too difficult. The things I used to find so enjoyable are now not. In order to cope with Mr. Ice Pick, I had to put my old self into a box and hide away. Because Mr. Pick made me not me anymore. I used to define myself by the things that I did: being a medical student, being active and living life at full speed. But Mr. Ice Pick changed things, and I lost myself.

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I decided to break up with Mr. Ice Pick. Eight months is way too long to stay in an awful relationship. All he ever did was take things from me. So I’m working on finding myself again – just me. And yes, Mr. Ice Pick is still there. He still sits on my shoulder all day. But I can choose to ignore him. This new me might not do the same things as the old me. I won’t be running a marathon anytime soon. I won’t be having a 10-hour study session tomorrow. I won’t be going to a loud concert next month. The list could go on and on forever about things I can’t do, but that would be Mr. Ice Pick talking.

woman in red coat standing on a tree stump in the woods

I’m still me. I’m resilient. I’m strong, and I’ve learned what true compassion is. I’m still searching to find myself, but I’m getting there. I’m not sure where I’ll be five years from now. But when I close my eyes and envision my 29-year-old self, I don’t see Mr. Ice Pick. I see myself, changing my corner of the world for the better. Maybe not as a doctor, but as me. I’m ready to lighten my burden and just keep climbing.

This post originally appeared on The Ellen Blog.

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For someone living with chronic pain, Facebook can seem like a minefield. You could write an honest post about how you’re feeling, but would your friends respond with supportive comments and encouragement? Would they be confused because you “don’t look sick?” Or would they respond at all? Chronic pain isn’t an easy topic to bring up on social media, and it’s understandable that many people choose not to write about it.

Facebook friends need to be educated about what living with chronic pain is really like, and you deserve an outlet to be honest in, so we asked our Mighty community with chronic pain to share a post they want to write on Facebook, but don’t. With more understanding of the struggles their friends go through every day, hopefully people who don’t live with chronic pain can begin to learn how to be truly supportive of those who do.

Here’s what our community told us:

1. “Just because I’m having a good pain day right now doesn’t mean my condition is in my head. My good days don’t discredit the pain I experience 99 percent of the time. Just because I look OK on the outside doesn’t mean I’m not [in pain].”

2. “I’m sorry if you’re sick and tired of seeing my posts about my health. Try to remember I am actually sick and tired every single second of every single day. And because of that fact I have zero social life. So sometimes just typing it on a screen and getting it out there helps. If it bothers you, just scroll past. But if you care… leave me a few words of comfort.”

3. “Just because I am in class with my mobility scooter and am able to walk over to sit at a table, does not mean I am able to stand up and open or close a window or do anything else that requires leaving my seat. I may look like a ‘normal’ person, but I am severely sick and in pain all the time all day long.”

4. “I hurt most of the time. I smile and use most of my energy to be kind to everyone. When you don’t see me I’m more than likely in pain and struggling to get the simplest tasks done.”

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5. “When I say I am tired, it’s not simply sleepy… it’s exhausted for no reason other than my inflammation is high. I am not posting it because I want to know what natural thing you have for your normal low energy level… I just needed to say it out loud so it’s not trapped inside my head. Going to take a nap won’t help either, people!”

6. “I’m sorry for being so short with you all and I am also sorry for being so distant. Sometimes it is really hard to be happy for other people going on adventures and trips when I used to be so active. Yes, there is an element of jealousy, but I do overcome that. Don’t let my snippy mouth fool you. The truth is, I wish I could be a better friend, a better family member, and a better member of society… Please share your happy moments with me and I’ll try harder to be more positive.”

7. “I want to reach out so badly, especially on my really bad days, but I know people will perceive it as complaining, seeking pity, or weakness. People have drifted away or turned the other cheek because they don’t know how to help or just can’t understand.”

8. “My illnesses do not define me. They are not me. I know I complain, I moan and I cancel all my plans. Please understand that if I had it any other way I would. I am braver than you think.”

9. “There are lots of things I’ve wanted to share to spread a little understanding, but I don’t in fear of being viewed as someone who’s trying to get attention. I mostly want people I work with or have worked for to see these things so they can understand why I’ve called in sick.”

10. “The person I am inside and the person [my condition] forces me to be every waking and sleeping moment of my life are polar opposites. I constantly walk on egg shells in fear that I’ll overdo it and be in a place where I’m not able to escape from the noise, lights, people, and everything that becomes too overwhelming when my symptoms get bad. Despite this, I will not stop fighting.”

11.I’ve always wanted to talk to people about asking, ‘How are you doing?’ It always breaks my heart when someone asks that and I answer honestly only to see their face drop or their eyes glaze… and I realize they just wanted me to say ‘Great!’ Or ‘I’m fine, thanks.’ Part of me wants to say, ‘Why ask?’ If you can’t handle or don’t care about the answer, asking is not polite or kind.”

12. “It’s hard to live financially when you are too sick to work but not sick enough to get SSDI after years of working. I want to throw my hands up and try to go back to work but I physically can’t.”

13. “Hey, I’m still here, I might not have been around lately, but I still care and I miss you. I feel like you’ve forgotten me. Please, just talk to me.’”

14. “Every day is an absolute struggle just to appear normal, and then working and maintaining a life on top is exhausting. Every day I wake up more exhausted than when I went to bed. It gets slightly better at the end of the day. Then I struggle to sleep because of the pain. It’s like having a permanent hangover.”

15. “Family, friends and colleges. I am sick. I may not look sick. I may not act sick. You will see my laugh and smile and talk with you every day. But please remember that every day is a momentous struggle to be there for you in my life and work… Please think before saying I’m a bad friend or family member. Please think before saying I’m ‘always ill.’ Please think before questioning my days off work. I don’t do this on purpose. I didn’t choose this. But I choose to be happy.”

16. “I would rather talk about other things than my illness, how I am feeling, and what hurts today, what causes my illness to flare…. To get outside of myself for a while. I might be fragile, but I want to feel normal, even if it’s for a few seconds.”

17. “Please… do not tell me how tired you are after you went to the gym. Please don’t tell me how your aunt, sister, grandma’s nephew twice removed has that but is not as tired as I am. You have absolutely no clue.”

18. “I lied to you today. I’m not OK. I’m not OK at all. I’m exhausted. I’m in so much pain, I can’t think. I just need you to see through my lies. I just need to tell you the truth, but I don’t. You ask, and I lie.”

19. “I sometimes resent people who complain about their temporary pain, and then I resent myself for not being as understanding. Chronic pain desensitizes you when it comes to a ‘normal’ person pain. Pain goes away — chronic pain never does. I wake up feeling the way you feel after pulling a muscle or running a few miles, and that is honestly the best I will feel all day.”

What’s a post you want to write on Facebook about your chronic pain, but don’t? Share in the comments below.


Dealing with chronic pain for the last six years has really changed how I look at everything. Here are the top five ways chronic pain has changed my outlook on life:

1. It has taught me compassion. Going through life with chronic pain is never an easy thing, but it has provided me an insider’s view that I never had before. It has taught me to never belittle someone’s pain. It has taught me that everyone is fighting a battle.

2. It has allowed me to help others. I have been able to help countless people over the years. I have been able to support others who are going through similar situations. Chronic pain is something no one understands until you live with it. It can be hard to find a support system. Giving support to others has helped me by creating new friends and giving and getting support. A lot of these people have become best friends.

3. It has taught me how live life while fighting a battle. Every day I go through life at high pain levels that would cause most people to go the the ER. Chronic pain has taught me that you can get through anything if you put your mind to it. No matter how hard life gets, I know that I will be able to make it through.

4. I has shown me who’s there for me and who’s not. I’ve had people turn their backs on me and some that have made rude comments. I have had others who have not stopped supporting me and who are always waiting to hear updates. They always want to hear and see that I’m doing better, but if I’m not, they still support me through thick and thin.

5. It has taught me to never give up. Giving up is not an option when you live a life of chronic pain. You learn to adapt and overcome the challenges thrown at you, whether they are medical challenges or life’s challenges.

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